Sarcoma Alliance

Grant will update Peer-to-Peer Network

2012-02-05T17:46:00.000-08:00

Merck has awarded $15,000 to the Sarcoma Alliance so that it can update the software and print pamphlets for its Peer-to-Peer Network, in hopes of reaching more people.

The program began in 2005 and now has more than a thousand participants in all 50 states and 12 countries. It's open to patients, caregivers and others affected by sarcoma. Because of the rarity of the cancer, participants rarely live in the same city. After two people are matched, they usually communicate by phone or via the Internet.

Sarah of St. Cloud, Fla., and Brenda of Corona, Calif., were matched five years ago. They talk once, twice, sometimes even three times a week by phone, but they’ve never met.

“I got blessed,” says Sarah, at right. “We became fast friends. We both leaned on each other. We’re on this journey together. Hopefully, one day we’ll meet.

"It’s not Peer-to-Peer, it’s Friend-to-Friend.”

Both were diagnosed six years ago with synovial sarcoma. Sarah’s left arm was amputated above the elbow, and Brenda lost her left leg above the knee. Both did chemotherapy.

“Brenda and I are like mirror images. Same age, same sarcoma,” says Sarah, 49.

“We talk all the time about everything -- life in general – and we joke!” says Brenda, at left, and dancing the tango in the video. When a lump arose on her leg, she got a biopsy. Otherwise, “I would not let any one touch me until they knew what it was. I had no clue I had sarcoma, but I had the gut feeling that this would kill me if they screwed up.”

Sarah says she had pain in her elbow for a number of years. One doctor put her on antidepressants. She saw an orthopedic doctor for carpal tunnel. The doctor who finally diagnosed her said “he had never seen another sarcoma in all of his years.”

“I thought I was doomed.” But she saw specialists and remains in remission, as does Brenda. Even now, Sarah says, “Cancer is always in the back of your mind. You’re never really free of it.”

A nurse with synovial sarcoma founded the Alliance in 1999 to provide guidance, education and support to others. Merck is the second-largest healthcare company in the world.

Loving the sarcoma community at CTOS

2012-01-10T14:29:00.000-08:00

By Suzie Siegel

Kate Barzan Smith, who is working on her PhD in pharmacology at the University of California-Los Angeles, would love to find new drugs to treat sarcoma.

“I’m fighting as hard as I can,” she told me at the annual meeting of the international Connective Tissue Oncology Society in Chicago last fall. The "meeting" is actually a conference that lasts several days. Last fall was the first time the CTOS meeting was held in conjunction with the annual meeting of the Musculoskeletal Tumor Society. About 800 people who research sarcoma and/or treat patients attended. Officials believe it was the largest conference on sarcoma ever held in the world.

Smith has been researching liposarcoma. “I had never heard about [sarcoma] until I started working on it.”

At the 2009 CTOS meeting in Miami Beach, she met me, Sarcoma Alliance board member Dave Murphy and Executive Director Arthur Beckert. She had never met patient advocates before, especially not ones who also had the disease.

“There’s nothing for you guys, but you’re willing to come to these conferences, and you keep coming." Talking to advocates “changed the way I approached my science. It gave me motivation to work harder. It made me fall in love with the sarcoma community.”

That made my day.

About 20 people representing 11 nonprofit organizations attended CTOS, and there couldn't have been more than 10 of us who also are patients ourselves. A few staff members also went, plus people who lost a loved one to sarcoma, such as Dave. He has attended every CTOS meeting since 2002. I've been to every one in North America since 2004.

Generally, we can't afford the hotel where the meeting is held. Dave looks for a cheap hotel, and I try to mooch off friends. We pay our own registration fees.

We go to hear about the latest research and analyze trends in the field. In addition to formal presentations, we have opportunities for informal chats, and we get to network. Once, for example, I introduced a researcher to another with the same interest, and the younger one was able to get tissue samples from the older one. We see who commands respect in the sarcoma world, and who works well with whom. We try to use this information to help others affected by sarcoma.

Power of the Ocean will raise money Jan. 21 for Assistance Fund

2012-01-02T15:44:00.000-08:00

A woman lying in a hospital in Pennsylvania. A Montana cowboy. A young man in college in Southern California. They have two things in common: All were diagnosed with sarcoma, and all received grants from the Sarcoma Alliance to help pay for second opinions from experts.

So that more people can get grants, the Alliance will hold a fundraiser 5-9 p.m. Jan. 21 at Saint Rocke in Hermosa Beach, in the Orange County-Los Angeles area. The event will feature food, live rock and reggae, dancing and a silent auction.

People also can donate directly to the Alliance's Hand in Hand: The Suzanne R. Leider Memorial Assistance Fund, and 100 percent of their money will go to patients seeking an expert opinion.

At a sarcoma conference this fall, Dr. Robert Benjamin (at left), chair of sarcoma medical oncology at the M.D. Anderson Cancer Center in Houston, said: “Given that the state of the art is clearly inadequate, if everyone was treated at a multidisciplinary sarcoma center, the survival rate might go up 15 percent. Patients aren’t going to do as well if treated by someone who thinks sarcoma is just the flavor of the day.”

“Taking a plane is one of the best ways people can improve their survival,” said Dr. Samuel Singer, leader of the multidisciplinary soft-tissue sarcoma team at Memorial Sloan-Kettering Cancer Center in New York.

That's what Drake Brada-Pitts did in 2008. (He's pictured with his sister, Kiersten, on their way to a dance for childhood cancer survivors.) He had synovial sarcoma, and one doctor recommended chemotherapy and another didn't, said his mother, Deborah Brada of San Diego. They sought an opinion from a doctor who specialized in sarcoma in adolescents at Dana-Farber Cancer Institute in Boston, and the recommendation was: no chemo. Drake is now 21 and cancer-free.

"He no longer needs to go for scans and can focus on college and his future," Brada said. "I am so thankful that the Sarcoma Alliance enabled us to get that second opinion at Dana-Farber. Otherwise, Drake would have undergone unnecessary chemo that would have harmed both his body and his spirit. As his mom, I was terrified to have him do chemo and even more terrified not to, so seeing a specialist in teen sarcoma was exactly what we needed to move forward with confidence. Now, looking back, it feels great to know we made the right decision."

Jenny Miller of Athens, Penn., had surgery last year for malignant fibrous histiosarcoma at a local hospital. Although she wondered if she was wasting her time, she went for a second opinion at Roswell Park Cancer Institute in Buffalo, N.Y. The Alliance reimbursed her for expenses, including insurance co-pays. She said she got important information, such as the need for regular scans, which showed a tumor in her lung. Chemo shrunk it, and a tumor in her leg was removed.

"My insurance won't pay for hardly anything," she said from her hospital bed, where she was being treated for an infection in her leg. "I would never have gotten through all of this without everyone's help."

Troy Foss of Billings, Mont., was diagnosed last year with myxoid liposarcoma. (He's in the photo below on his four-wheeler.) "I'm a dumb Montana cowboy. I turned to my wife, who's a nurse, and she said, 'It's a fancy word for cancer.' " His doctor recommended specialists in New York or Boston.

"I used to be a truck driver. I hate big cities. You're broke before you get there," he said. His wife suggested the Mayo Clinic in Rochester, Minn., instead. They sought financial help from a local nonprofit, without any luck, he said. But the Alliance reimbursed them for gas and hotel rooms.

"As far as I'm concerned, the Sarcoma Alliance takes care of people."

Foss is in remission after radiation, chemotherapy and the amputation of his right leg. Doctors offered him time to consider the amputation, but he told them: "I've already decided. Let's git 'er done. Just get to cuttin'.

"It was scary to me, but it was either that or die."

Since the Assistance Fund was created in 2003, more than 375 grants totaling nearly $190,000 have been given to people in every age group in almost every state with almost every type of sarcoma.

"The number of people asking for assistance has gone through the roof in the past few years," Executive Director Arthur Beckert said. He attributes the increase to greater outreach, coupled with the economic downturn. As a result, the Alliance has had to reduce its grants to a maximum of $350. Even then, the fund didn't have enough to pay for the 70+ grants given this year; for the first time, the Alliance had to dip into its general operating funds so that no one who qualified would go without.

People have to fill out a form to get reimbursed, and two board members double check the travel expenses of applicants. "Their willingness to do the paperwork shows you how important every penny is to these folks," said Beckert, noting that cancer can bankrupt people.

The Alliance's biggest fundraiser is the Ocean of Hope (O2H) campaign, which consists of paddleboard and outrigger-canoe races throughout the year. The Alliance will honor the athletes at the Power of the Ocean event Jan. 21. The proceeds will be split between the Assistance Fund and the P.S. I Love You Foundation's Day at the Beach program for at-risk children.

Nearly 300 people are expected to attend the fundraiser. Sponsoring companies include Zinka, Patagonia, Skechers and Stantec. In addition to many sports items, the silent auction will have everything from gift certificates to Murad Inclusive Health Spa in El Segundo, Calif., to an afghan knitted by a sarcoma patient.

For tickets or more information, click here.

U.S. Rep. Kathy Castor gives us a holiday gift

2011-12-19T15:16:00.000-08:00

By Suzie Siegel, board member

U.S. Rep. Kathy Castor, D-Fla., told the Sarcoma Alliance that she will introduce a resolution in January to name July as Sarcoma Awareness Month.

“Sarcoma touches the lives of thousands of people throughout the United States each year, but unfortunately, many people do not even know about this devastating form of cancer," Castor says. "I hope that by designating July as Sarcoma Awareness Month we bring more attention to this disease and continue working to find a cure.”

She's my representative, and I had asked if it would be possible to get the ball rolling before July to give advocates time to prepare events. With a Congressional resolution, it would be easier to get sarcoma added to calendars and other lists by organizations, institutions and the media.

Suzanne Leider, the founder of the Alliance, had proposed a Sarcoma Awareness Week for June 10-16 in 2001. CancerSource and Sarcoma.net collaborated on an event. Eventually, the week expanded to a month. Other nonprofits, such as the Sarcoma Foundation of America, and sarcoma centers, such as the Huntsman Cancer Center in Salt Lake City, also adopted June as a time to raise awareness. Meanwhile, Bruce Shriver of the Liddy Shriver Sarcoma Initiative started an International Sarcoma Awareness Week in July.

In 2006, I began asking nonprofits why we couldn't pick one month that we could all recognize. Because Shriver would not budge from July, the Alliance and others agreed to go with July as Sarcoma Awareness Month in 2007.

Now, I don't know anyone in the field who disagrees with July.

I asked Rep. Castor if she would introduce a resolution because she co-founded the bipartisan Children's Health Care Caucus. Although sarcoma represents 1 percent of cancers in adults, it's 15 percent of those in children. The National Cancer Institute reports 13,800 people were diagnosed this year.

"The number keeps going up," says Alliance President Joan Darling. Nevertheless, the figures may be low because the government often lumps sarcomas with carcinomas. For example, she says, it tracks Kaposi's sarcoma, which is linked to AIDS, but sarcoma that starts in the breast is grouped with more common types of breast cancer. In contrast, the American Cancer Society separates the different subtypes of sarcoma in children, which makes it harder to see the impact of sarcoma on young lives.

Her daughter was diagnosed with an abscessed cyst at age 13. After surgery, the pathology report revealed alveolar rhabdomyosarcoma. "Her pediatrician had never seen sarcoma before." A correct diagnosis is vital to treatment, Darling says, and her daughter did get the help she needed.

"Proper treatment doesn't just help patients. It also saves taxpayers," she says. "Why waste millions on less-effective or more toxic treatment?"

In his years at Memorial Sloan-Kettering Cancer Center in New York, renowned researcher Robert Maki estimates 10 to 15 percent of the patients who had been diagnosed elsewhere had at least a minor change to their diagnosis when Sloan tested their tumor. This year, Maki, MD, PhD, became chief of the Pediatric Hematology/Oncology Division and medical director of the Sarcoma Cancer Program at Mount Sinai Medical Center in New York.

Many sarcoma patients have never heard of anyone else with their cancer. Their doctors may not know all the treatment options or that sarcoma nonprofits exist. Doctors may not refer patients to oncologists who specialize in sarcoma.

Dr. Maki contrasts sarcoma awareness with awareness of breast cancer: A person can have a 10-centimeter lump on his leg and not suspect cancer. “But if a woman has a small lump in her breast, boom, it’s out,” he says, snapping his fingers.

Unlike more common cancers, sarcoma has had few champions because it's rare and aggressive, says Joni Freedman of Palm Harbor, Fla., who was thrilled to hear the news about Rep. Castor.

"It gives us all hope. It was time for someone of her stature to recognize the thousands of us out there who have never had a voice before," says Freedman, who helped manage the sarcoma mailing list on the Association of Cancer Online Resources. The longtime advocate has survived 15 years with fibrosarcoma, but the cancer has now spread to bones throughout her body.

Dan Schultz of Bryn Mawr, Penn., contacted the Sarcoma Alliance last July, offering to help get recognition for Sarcoma Awareness Month. His doctors had found sarcoma throughout his body; it's considered undifferentiated because it does not fit into one of the more than 50 subtypes of sarcoma. He has undergone grueling chemotherapy, but his options are limited due to the current shortage of Doxil.

Schultz hopes people will ask their U.S. representatives to support Rep. Castor's resolution. (In the top right of this page is a way to search for representatives by ZIP code.)

"In a time of so many challenges in Washington, give thanks this holiday season for efforts by Congress to come together for a great cause," he says. "This resolution, if passed, would heighten awareness of sarcoma in a community without strength in numbers due to the rarity of the disease."

I put out a news release on this subject if anyone would like to see that.

Tips for supporting cancer patients online

2011-12-12T18:14:00.000-08:00

Telling cancer patients to fight, pray or stay positive can hurt more than help.

“Don’t offer advice unless someone asks for it,” says Margaret Price, a social worker at the Moffitt Cancer Center in Tampa. She has run cancer support groups for 15 years.

“You’re welcome to say what helped you,” she says. “But if you tell people what they should do, they may feel that you don’t want to hear about their doubts, fears, anger or despair.”

“Some people may blame themselves if their cancer comes back and spreads,” says psychologist Karen Milo (in the photo). “They may think they didn’t pray hard enough, fight hard enough or stay positive.” She worked at Moffitt and continues to see cancer patients in her private practice.

Members of the Sarcoma Alliance have helped create support groups for sarcoma patients. Because sarcoma is a rare cancer, however, it can be hard to get enough people in the same place at the same time. That’s why the Alliance also offers online support: a Facebook page, discussion board, peer-to-peer network, live chat room, YouTube channel and this blog.

In an in-person support group, a trained facilitator can lay down ground rules and gently steer the conversation if it takes an unhelpful turn. Because online support rarely has that much guidance, we've developed the following suggestions, in consultation with Price, Milo and other professionals:

-- Feel free to talk about how your beliefs have helped you, but don’t assume your beliefs will comfort others. For example, Price says, you might say how prayer helped you or welcome prayers from others, but don’t tell them that they need to pray or keep the faith. That can silence those who are not religious or those who want to talk about fears and doubts.

-- Beware the “tyranny of positive thinking,” writes psychiatrist Jimmie C. Holland in her book “The Human Side of Cancer.” It’s great if people can enjoy life despite their diagnosis and treatment. But telling people they need to stay positive, or that a positive attitude will help them survive, can keep them from expressing “negative” emotions. That’s not healthy, writes Holland, who pioneered psychosocial treatment for cancer patients.

“Research shows that a positive attitude doesn’t actually help cancer patients live longer,” Price says.

-- Think twice before comparing cancer to war. This metaphor has been around for a long time, and it works for some, but not others, says Price, who spoke on the topic at a Moffitt conference this year. Some people prefer to work on healing and acceptance in their cancer journey. If cancer is a fight, then it will have winners and losers. People may feel defeated if their cancer advances, she says, with little interest in hospice or other help for the time they have left.

“The rest of a patient’s life is often disregarded or put on hold because all resources must be marshaled for the war effort,” she says. “This intense focus may serve as a barrier to alternate understandings of one’s life in the context of profound illness.”

Patients have a right to decide when they want to stop a particular treatment or all treatment. This doesn’t make them any less courageous, she adds.

-- Don’t give medical advice. You can discuss your own experiences and interests, but remember that cases are different. This is especially true for a rare cancer like sarcoma. The chemo that worked for you may not be appropriate for someone else, for instance.

-- Don’t make a major change in your diet or take supplements without consulting your physician. Raw fruits and vegetables can be risky for chemo patients with low white-cell counts, for example. Like conventional medicine, herbs can have side effects. Social worker Tom May, program director for the Cancer Support Community-Redondo Beach in Los Angeles County, says he often hears people tell others that they can cure themselves if only they take X or eat Y.

-- Don’t monopolize conversations.

-- Avoid partisan politics.

-- Keep in mind that it’s easier to misunderstand someone online than in person.

-- Try not to be alarmed at the experiences of others. Support groups tend to attract the newly diagnosed, those with advancing disease, and those with physical impairments. You're less likely to meet people who were treated years ago, whose cancer has not returned, and who can still do whatever they did before their diagnosis.

Register for telephone workshop on treatment updates

2011-12-08T17:53:00.001-08:00

Cancer Care will hold a free workshop on the latest treatments for sarcoma Thursday from 1:30 to 2:30 Eastern time. Speakers include Dr. George Demetri, Harvard; Dr. Jeffrey Wayne, Northwestern; Dr. Tom DeLaney, Massachusetts General Hospital; and Cancer Care Director Carolyn Messner.

Register online or call 1-800-813-4773. You can hear this workshop on the phone or an online webcast. If you are not able to participate, the workshop will be available later by calling 1-888-337-7533 or going online. For more information, visit Cancer Care's website.

A Study of Trabectedin or Dacarbazine for the Treatment of Patients with Advanced Liposarcoma or Leiomyosarcoma

2011-11-03T12:32:00.000-07:00

Johnson & Johnson announces a clinical trial.

Johnson & Johnson Pharmaceutical Research & Development, L.L.C. and PharmaMar are conducting a Phase 3 clinical trial for trabectedin or dacarbazine in patients with liposarcoma or leiomyosarcoma. This is a randomized (study drug assigned by chance), open-label (all patients and study staff know the identity of the assigned study drug), active-controlled (comparing to a different drug used for the same condition), parallel-group (different treatment groups continue with separate treatments throughout the study), multicenter study. This study will be divided into three phases, screening, treatment, and follow-up. During screening, potential patients will be assessed for study eligibility after providing signed informed consent. During the treatment phase, patients will receive study drug once every 3 weeks, until disease progression or signs of toxicity. Assessments will be performed to evaluate the effectiveness of the drug, and patient safety will be monitored. During the follow-up phase, after the last dose of study drug, clinical outcomes for patients will be evaluated. Trabectedin will be administered at a dose of 1.5 mg/m2 through a catheter into a large vein as a 24-hour intravenous (IV) infusion, once every 3 weeks, until disease progression or signs of toxicity. Dacarbazine will be administered at a dose of 1.0 g/m2 as a 20-minute infusion, once every 3 weeks, until disease progression or signs of toxicity. For more information on this study, please visit www.l-sarcomastudy.com or www.clinicaltrials.gov (Identifier # NCT01343277).

Second opinions at multidisciplinary centers

2011-10-22T16:28:00.000-07:00

Many people with sarcoma could live longer and better lives if they saw a sarcoma specialist sooner. That’s why the Sarcoma Alliance lists multidisciplinary sarcoma centers and gives grants to those who have to travel to get a second opinion.

Travel is common because more than half the states in America lack a multidisciplinary sarcoma center that treats adolescents and adults. Parents may need to travel to get their younger children seen, and they also can apply for grants, but they have more options.

“My feeling is that any pediatric hospital is suitable for the three common pediatric sarcomas: rhabdomyosarcoma, osteosarcoma and Ewing,” says Alliance President Joan Darling, a volunteer with the Children’s Oncology Group, which has a map of its member hospitals.

Because there is no official designation or board certification for a “sarcoma specialist,” people may define it differently. In 2004, the National Cancer Institute convened the Sarcoma Progress Review Group, which recommended patients be treated at multidisciplinary sarcoma centers, and it listed criteria for the centers. Here is the Alliance’s updated version:
• A sarcoma medical group consisting of all specialties, including surgical, orthopedic and medical oncologists; radiologists; pathologists; and oncology nursing as well as rehabilitation services.
• At least one group member who belongs to a sarcoma-oriented medical organization, such as the Connective Tissue Oncology Society (CTOS).
• Publications concerning sarcoma in peer-reviewed journals.
• Sarcoma conferences (e.g. Tumor Board), where sarcoma group members meet at least once per month to discuss patient care issues.
• At least 100 sarcoma patients seen per year.
• MRI imaging available; PET scans desired.
• Patient enrollment in clinical trials.
• Strong support personnel such as social workers, psychologists and psychiatrists.
• Sarcoma support group desired.

“Since there are approximately 50 types of sarcoma, accurate diagnosis by a world-class pathologist is the first step in an optimal treatment plan. Surgery, radiation therapy and chemotherapy are all critical approaches toward treatment of the primary tumor, prevention of tumor spread, and therapy of sarcoma even after it has spread to other sites. Radiologists are key to diagnosis, recurrence, and assessment of response to therapy. Rare diseases such as sarcoma are best managed by an experienced multidisciplinary team at a comprehensive cancer center such as The Sylvester Cancer Center in Miami,” says Jonathan Trent, MD, PhD, a sarcoma medical oncologist who recently moved to Miami from the M.D. Anderson Cancer Center in Houston.

CTOS and the Musculoskeletal Tumor Society will hold a joint annual meeting this week, Oct. 26-29, in Chicago. Dr. Trent will present research there. The meeting will draw hundreds of sarcoma experts from around the world, along with volunteers from the Sarcoma Alliance and staff from other nonprofits. Ironically, Illinois does not have a multidisciplinary sarcoma center, according to Alliance criteria. But the Chicago area does have sarcoma doctors who participate in clinical trials.

Across the country, many patients fail to get state-of-the-art care. They may not know that sarcoma specialists and multidisciplinary centers exist. Or, they may lack the desire, time or money to travel to one, the Progress Review Group report says.

“Additionally, physicians and surgeons in small- and moderate-sized hospitals often want to maintain control of patients … for economic and other reasons,” the report says. “However, many physicians do not appreciate how complex the care of sarcoma patients has become and are not aware of the many alternative care strategies available.”

Especially with a rare cancer, most doctors will not mind if a patient seeks a second opinion. It's a bad sign if a physician is offended. Sarcoma centers allow patients to schedule appointments without a referral from their current physicians, although some insurance plans may require a referral for reimbursement. Sarcoma centers often can help patients with insurance questions, as well as travel plans.

After getting a second opinion, some patients may choose to get part or all of their treatment closer to home, with a doctor in the sarcoma center consulting with the local doctor. If nothing else, a second opinion may reassure patients that they are getting the best treatment available.

23 and Me’s Sarcoma Research Continues

2011-10-19T13:02:00.000-07:00

One of the 23 and Me scientists has been analyzing sarcoma data with the help of Drs. George Demetri and Bob Maki. Thus far, there are no specific regions that may be considered uncontroversially “genome-wide significant,” but a number of interesting regions appear to have suggestive associations and may become genome-wide significant with additional data. Because of the promising nature of their analysis, they are still interested in having more genetic material to analyze. A simple saliva sample is all that is needed. More people = more power for the research.

While they are still recruiting people with any sarcoma diagnosis into the community, they are particularly interested in increasing participation from individuals with the following subtypes:

· leiomyosarcoma

· uterine leiomyosarcoma

· osteosarcoma

· chrondrosarcoma

· liposarcoma

· endometrial stromal sarcoma

· fibrosarcoma

· synovial sarcoma

For more information please read:

https://www.23andme.com/about/press/23andme_achieves_milestone_in_building_sarcoma_research_community/

Brush Dance sells holiday cards to benefit the Alliance

2011-10-07T13:13:00.000-07:00

If you haven't purchased holiday cards yet, consider sending some that not only express the joy of the season, but also support a great cause. Brush Dance has several great looking cards that support the Sarcoma Alliance, and through Oct. 13, shipping is free. Brush Dance donates a portion of each box sold to the Sarcoma Alliance.

The design at the left is here. Or, see the snowman, reindeer, ornament or stocking.

Sarcoma Alliance updates directory of nonprofit organizations

2011-10-04T19:08:00.001-07:00

Since 2006, the Alliance has maintained a directory of U.S. and international sarcoma organizations, including their mission statements, accomplishments and contact information. The 2011 directory is here.

The directory helps nonprofits cooperate and collaborate. Sarcoma patients and their families and friends also can use it to find organizations that serve their needs. People may find one nonprofit that does everything they want. Others will seek different things from different groups.

Cancer nonprofits can be divided into those that provide direct services, those that concentrate on raising money for research, and those that do both. The Alliance fits into the first category. It offers guidance, education and support on its main website, with more information each month. A peer-to-peer network, live chat room, blog, Facebook page, YouTube channel and discussion board let people support one another and share information. The Alliance also helps start sarcoma support groups, and provides financial assistance to patients seeking a second opinion from sarcoma specialists.

Although the Alliance advocates for more research and encourages people to consider clinical trials, its goal is to help people right now. Many patients could live longer and better lives if they got the correct diagnosis and access to more effective treatment. But many don’t because doctors who lack expertise in sarcoma treat them, at least initially.

Of the nonprofits that fund research, some give money to particular doctors and scientists or to particular institutions. Some have medical advisory boards that review grant proposals and pick the ones they consider best. Some fund basic science while some pay for clinical trials. Some finance research on sarcoma in general while others aim at a particular subtype, such as leiomyosarcoma.

Newly diagnosed patients can get overwhelmed searching the Internet. The Alliance recommends: Take a deep breath and then start a list of the nonprofit websites you visit and what they offer. Note which ones you like and dislike and your reasons, such as: “confusing.” Keep in mind that an organization that confuses you in the beginning may make more sense later. In other words, your knowledge and needs are likely to change over time.

If you can afford donations, don’t forget the nonprofits that inform and support you. If you prefer to donate for research, are you hoping that your money will help find a cure for you? If so, you may want to look at the time it takes to bring a new drug to market and choose research that is further along. But the timeline doesn’t matter as much if you simply want to support scientific discoveries aimed at ending sarcoma one day.

Please contact the Alliance to add a nonprofit to the Directory of Sarcoma Patient Advocacy Organizations and Foundations or to update an existing listing.

Camaraderie on the beach

2011-09-29T07:39:00.000-07:00

By Suzie Siegel

For the first time, I flew to Los Angeles to see our Ocean of Hope team compete in the Catalina Classic Paddle-board Marathons last month. I discovered that you don't see much paddling from the beach, but you do have plenty of time to talk to survivors and supporters.

Some of us had never seen other volunteers in person. Some stretched out on beach towels and under umbrellas. Others worked behind the tables laden with food and O2H merchandise. (In the photo above, Board President Joan Darling; her son-in-law, Dan Olig; and survivor Amy Regenstreif relax before the work starts. The next photo shows past Board President Ellen Silver and survivor Christine Tope.)

People who stopped by got a quick lesson on sarcoma and the Sarcoma Alliance. We also helped educate people on cancer in general.

For a while, I stood out in the sun, selling raffle tickets for the beautiful blue board donated by master board shaper Joe Bark. I caressed it as if I were Vanna White on "Wheel of Fortune." I also sold jewelry -- back home, I sell donated items to raise money for the Alliance.

Paddlers raise money through O2H, as do sarcoma survivors, family members and friends. The series of ocean races known as O2H is the biggest fundraiser for the Sarcoma Alliance. It raised $50,000 this year, bringing the 12-year total to $600,000. This year, Mike Rogers was the biggest fundraiser, bringing in $17,730. He's in the photo below.

A group of us would run down to the water whenever the announcer said one of our four guys had finished. I felt especially happy when I heard Mike’s name announced because he had been so worried that he wouldn’t make the 32 miles to Manhattan Beach. He’s our oldest paddler, and he was still healing from injuries. The picture at left shows him at Palos Verdes.

“It was 8 hours of hell.” The water was choppy, and his muscles were cramping. “I felt bad because I knew people were on the beach, and all I could do was go past the flag, do a U-turn and get on the boat with towels, and shake.

“I had people to help and not let down, and even being an elder paddler is no excuse to stop. … My Mom was on the pier to cheer. I was seeing double at that point and was sore and cold. She said, ‘Well done, you finished. Now what?’ Redefine my goals and raise a lot more money next year to help.”

If you or your loved ones raise $3,000, a bright sticker with your name on it will be affixed to a board. Mike had Tracey Talley’s name on his board. Steve Shikiya had Josephine Schiavo. Joel Pepper had the names of Wendy Sommers and Susan Bohardt on his board. He's pictured with Bob Bohardt and his daughters, Cara Kohlrieser and Julie Beam, both RNs, at left. Phil Ambrose is in the photo at right, with Fred Sardisco, O2H co-captain. Phil had Suzanne Leider and Bob Chambliss. (I'm way

late in profiling Bob on our site. He was the only sarcoma survivor to paddle in O2H, and he was a terrific supporter of the Alliance and others with sarcoma. His mother, Kathy, also served on our board.)

Joel came in seventh in the stock board division. The other three paddlers were in the unlimited division, with bigger and faster boards. Steve was 28th, Phil was 51st and Mike was 57th.

To win a raffle, luck helps, but buying a bunch of tickets helps even more. Steve gets that – and the paddleboards. “He won the Hennessey's paddleboard raffle and the O2H raffle. Crazy!” said Aimee Spector, co-captain of O2H. He's in the photo below.

Barney Tong is the offical O2H photographer. For more photos, go to Picasa.

In the photo below, left to right, on the front row, are: Laura and Fred Sardisco, Aimee, Cara and Julie. Standing are: Suzanne's brother, Philip Leider, board member; board member Marites Tullius, a nurse practitioner and friend of Suzanne's; board member Dave Murphy, whose wife, Piera, died of sarcoma; nurse practitioner Betsy Haas-Beckert and husband Arthur Beckert, executive director; me; Bob; Suzanne's mother, Sharon Leider; survivor Alan Nishio; a person I can't identify; and survivor Kendra Krause between board member Ali and her husband, Dan. Not pictured are survivor Kelly Flynn and Kendra's husband, Brian.

Lanakila women win again and again!

2011-09-28T11:20:00.000-07:00

There's no stopping the women from the Lanakila Outrigger Canoe Club who compete for the Ocean of Hope, a series of ocean races that raise money and awareness for the Sarcoma Alliance.

The women's team won first place Sept. 10 in the U.S. Outrigger Championships for the second time in a row. The canoe club is based in Redondo Beach, and the 27-mile race starts in Newport Harbor and ends in Avalon on Catalina Island, all in Los Angeles County.

"It was a very hard race. The conditions were on the ama [outrigger float] side the whole time, and our team had to slog through wind chop and unfavorable swell direction to make it to first place," says Aimee Spector, O2H co-captain. "We beat the second place team by four minutes."

In addition to Spector, the team consisted of Jeane Barrett, Jill Schooler, Dani Bell, Jean Geddes, Kellie Lancaster, Theresa Connelly, Laurie Parker and Lise Fernow. O2H members in two Bradley canoes who raced in that division were: Dawn Suskin, Heather Suskin, Katy Arnold, Agnes Regeczkey, Tanya Muhle and Nancy Hu.

"Our Bradley teams got first and fourth place medals, and all of these teams had O2H team members in them," Spector says. "I am sending out a final thank-you email to supporters to update them on our win and to invite people to donate a final time for the year."

The O2H team also took first place Sept. 17 in the Pailolo Maui to Molokai race in Hawaii. Spector holds the trophy in the photo on the left. On the same day, her husband, Kelly, and Alliance board member Dave Murphy gave out information on sarcoma, sold gear and accepted donations at Hennessey's World SUP and Paddleboard Championships in Hermosa Beach, Calif.

Although the season ended this month, you can still donate on behalf of the paddlers here. Mark your calendars for the Power of the Ocean – Ocean of Hope Gala on Jan. 21. It will raise money specifically for Hand in Hand: the Suzanne R. Leider Memorial Assistance Fund, which offers financial assistance for second opinions by reimbursing expenses related to travel, phone bills, costs of the evaluation, and related expenses.

Sarcoma in children and young adults

2011-09-27T18:17:00.000-07:00

Sarcoma represents roughly 15 percent of all cases of childhood cancer diagnosed each year, says Joan Darling, president of the Sarcoma Alliance. But you might not know it by the way statistics have been presented during Childhood Cancer Awareness Month.

The American Cancer Society lumps different types of leukemia together, for example, but separates different types of sarcoma. That makes it harder to see the impact of sarcoma on young lives.

But Darling sees it. Since 2001, she has volunteered as a patient advocate with the Children’s Oncology Group (COG), the cooperative that designs and implements clinical trials for childhood cancers. A biologist who lives in Lincoln, Neb., she also helps manage the Rhabdo-Kids mailing list for the Association of Cancer Online Resources.

Darling sees more than statistics – she sees her daughter, Ali, diagnosed with rhabdomyosarcoma at 13, now a young lawyer on the board of the Sarcoma Alliance. Here’s an excerpt from her daughter’s story:

“Having cancer absolutely changed my life. I don’t think it changed who I am, but I do think it changed my view. I will forever be plagued by the side effects of the drugs that saved me, and I still get nervous when I find any lump or bump. But, most of all, I love and cherish the qualities I’ve acquired through the experience. It’s been said so many times in so many ways, but it’s best put in one word: Perspective.”

The Alliance plans to expand its sections on children and young adults as well as adding more personal stories.

One will come from Joanna J. Burgess, who won the Great Comebacks Award, South Region, this month. She was diagnosed at age 3 with rhabdomyosarcoma and got a urostomy to replace her bladder. Radiation therapy caused colitis, and she later had to have a colostomy. She became a registered nurse who specializes in wound, ostomy and continence care.

“My efforts to help others have been a passion and an important part of my own recovery,” says Burgess of Apex, N.C. “From my experience, I think I understand the special challenges people face when they are living with these diseases and when they have ostomy surgery. I want people to know that someone understands what they are going through.”

Ashley Grennell of Groveland, Fla., hopes her story will help others see that they can live every day to its fullest despite a bad prognosis. Diagnosed with a sarcoma called malignant peripheral nerve sheath tumor, she went into hospice this month at age 26 after multiple surgeries and rounds of chemotherapy and radiation.

“I knew four years ago that we’d never get ahead of it,” says Grennell, whose last wish is to find the money for a funeral. “But I had four more birthdays, four more Christmases, four more years with my family. It was worth it.

“People always ask me, ‘How do you stay so positive? Every time I see you, you have a big smile on your face.’ You have two options. You can curl yourself in a ball, be miserable and waste your life, or you can say, ‘Yeah, this is the hand I’ve been dealt.’ You deal with it, and you live your life.”

Lanakila paddlers go for another win

2011-09-08T18:11:00.000-07:00

The women's team from the Lanakila Outrigger Canoe Club, which took first place last September, hopes to win again this Saturday, when they race in the U.S. Outrigger Championships. For sarcoma patients, however, they're always winners because they participate in Ocean of Hope, a series of ocean races that raises money for the Sarcoma Alliance. The women hope to raise $10,000 this year.

"The U.S. Outrigger Championships, held each year at the end of our paddling season, has over 1,000 paddlers from everywhere in the world competing in what is the best, the most competitive and the most exciting outrigger event in California," says Aimee Spector, steering in the photo on the right. "The women's race starts in Newport Harbor and finishes 27 miles later in Avalon on the island of Catalina."

The race is in Los Angeles County, and the Lanakila club is based at Redondo Beach's King Harbor, also in the county. In addition to Spector, team members include Katy Arnold, Agnes Regeczky, Jean Geddes, Theresa Connolly, Maki Miyazaki, Heather Suskin, Dawn Suskin, Suzanne White, Nancy Huh, Lisa Harden, Jessie Kennedy and Tanya Muhle.

Spector, captain of the Ocean of Hope team, joined O2H five years ago.

"Aimee got our canoe club, Lanakila, involved in Ocean of Hope and it seemed to me like a great way to add something meaningful to our training," says Arnold, in the Kaiwi Channel Relay in the photo above. "I started fundraising, and the support I got from friends, family and acquaintances was overwhelming, so I continued to fundraise every year, and now do it as part of my oc1 [outrigger canoe – 1 person] races in the spring. I like paddling outriggers because I love water sports, the ocean, and there is nothing like riding the swells in the open ocean, especially in Hawaii. It is truly exhilarating."

Geddes says she has learned more about sarcoma, including that animals can get it, too. In fact, it's a particular problem for large-breed dogs.

"Being a part of this team can help raise awareness about sarcoma cancers affecting all parts of the population, human and animal, and to raise money which can help cancer sufferers and survivors get second opinion grants which can literally save their life."

To support one of the paddlers named in this post, click on her name. You also can go here.

After the racing season ends, the paddlers have one more way to help sarcoma patients. They are planning the Power of the Ocean – Ocean of Hope Gala for Jan. 21. It will raise money specifically for Hand in Hand: the Suzanne R. Leider Memorial Assistance Fund, which offers financial assistance for second opinions by reimbursing expenses related to travel, phone bills, costs of the evaluation, and related expenses.

-- Suzie Siegel

Finishing what you start

2011-08-23T18:03:00.000-07:00

This black-and-white photo was taken in 2000, when Mike Rogers was 50. He had just completed the last of six annual Catalina Classic Paddleboard Marathons, and had raised almost a million dollars for cancer patients.

He took time off to care for his ailing father, and he gradually got out of shape. Two and a half years ago, he began training again.

"I'm back to my fighting weight."

Four months ago, however, he tore his right bicep, paddling around the R10 buoy near Palos Verdes in Los Angeles County. He adds: "I have really bad tendonitis in both arms. I ice them every night. It's an overuse injury."

In the photo on the right, he makes his way under the Manhattan Beach Pier and, in the photo below, he comes in aching.

Luckily, he has a loving back-up team: his Australian shepherds, Makena and the red Angel, below.

Sunday, he will return to the Classic for the Ocean of Hope, a series of ocean races that benefit the Sarcoma Alliance. At 62, he will be the oldest O2H team member.

"Even if I blow out my bicep and have to have surgery Monday, I have to complete this. I'm an old linebacker at heart," he says. "I have a real fear of failure this year. People say, 'What's the worst that can happen? You have to give up?' To me, that is the worst that can happen. I do not want to fail.

"I've been surfing my whole life," says Rogers, who was a linebacker in high school and college. He started paddleboarding in 1993. "In my 40s and 50s, I was a really strong paddler.

"One of the problems of the Catalina Classic is that it's so long and so hard. The quicker it gets done, the easier. The last 10 miles are pure hell." If you don't paddle hard enough, the current can pull the board backward. "I have dreams of paddling backward."

Supporting the Sarcoma Alliance, Rogers has discovered this rare cancer is not all that rare, at least not to O2H members, some of whom have lost friends and relatives. "Every story reinforces our cause; that it is greatly needed … and that we are truly making a difference.

"I love being in motion, and I love helping people," he says, explaining his motivation. Just as I post this, I get an email from him, with these words: "Five days to go for the old horse ... Manhattan never looks so good. It's about life, long or short … the wake we leave is all it boils down to. So, I paddle and try to help the ones less fortunate, one paddle at a time ... I hope my wake is remembered as a good one ... in the end …."

To keep him going, donate here.
-- Suzie Siegel

Living life fully, month to month

2011-08-20T12:32:00.000-07:00

For a smart young athlete, the world may stretch out like a sea of possibilities.

"I went to college, worked a lot in my career, and went to grad school," Steve Shikiya says. Then cancer struck. He was treated for non-Hodgkin's lymphoma 2007-08.

"After treatment, your perspective changes so much. Life is short, and I'm more goal-oriented now. I live my life month to month."

This year he competed in the Cold Hands Paddle and the Rock 2 Rock Paddleboard and Stand Up Paddle Race, both at Cabrillo Beach in Los Angeles County. On Aug. 28, he will race in the Catalina Classic Paddleboard Marathon, ending at Manhattan Beach. He had never done these three before. Aimee Spector, co-captain of the Ocean of Hope campaign, asked why he wanted to take on the "holy trinity" of paddleboarding.

"Because I can do them right now," he responded. "I don't know about next year."

The long-distance races also attracted him, he says, because they feel "like something most people will never do."

The series of ocean races raises money and awareness for the Sarcoma Alliance. Shikiya raises funds to fight lymphoma, but he also decided to join O2H after talking to Phil Ambrose and other team members. He was impressed that the Alliance was so involved with the paddling community.

"I'm passionate about fighting all kinds of cancer," Shikiya says.

He's new to O2H, but not the ocean."I've surfed probably since I was about 4 years old, and I thought the worst part of surfing was the paddling.

"I've known Joe Bark since I was 5 or 6 years old." Two years ago, the well-known boardmaker offered to lend him a paddleboard, saying, "If you try it, you'll like it." About a month later, he talked to Charlie Hutchens of Joe Bark Paddleboards. "He's such a cool guy, and he spent so much time with me that I thought I had to try it." He did, and "from that moment, I was hooked."

"You can't surf all the time. But paddleboarding is different. You can pretty much do it any day. You can go anywhere you want," even places you can't go by boat. Plus, he adds: "I needed an excuse to do more exercising."

Shikiya has a fundraising page here.

-- Suzie Siegel

Catalina Classic coming Aug. 28

2011-08-20T11:50:00.000-07:00

The Ocean of Hope helps keep the Sarcoma Alliance afloat.

"It has been an amazing road from when O2H started in 1999 with only one paddler … and a vision," says Mike Rogers, who will compete for O2H on Aug. 28 in the Catalina Classic Paddleboard Marathon, finishing on Manhattan Beach in Los Angeles County.

O2H members hope to raise $50,000 this year, bringing the 12-year total to $600,000. Just as important is awareness. The National Cancer Institute recognizes that sarcoma is “frequently misdiagnosed and highly underreported.” Patients -- and their health-care providers -- may not know all the treatment options or that nonprofits can help.

For the Catalina Classic, Rogers will join teammates Steve Shikiya, Joel Pepper, Philip Ambrose, Mark Schulein and O2H co-captain Fred Sardisco. Afterward, the team will raffle off a standup paddleboard donated by Joe Bark, with all proceeds going to the Sarcoma Alliance.

To contribute, go to this page.

-- Suzie Siegel

Scott Gamble does his best for us

2011-08-16T16:51:00.000-07:00

Scott Gamble flew the flag of the Ocean of Hope last month, when he won second place in the men's standup division of the Molokai 2 Oahu Paddle-board World Champion-ships.

"The wind, tide and swell were very good," Gamble says. "There were a lot of records broken! I beat my personal best by 30 minutes."

This is his second year to support O2H, a series of ocean races that raise money and awareness for the Sarcoma Alliance. He paddles in memory of his 22-year-old cousin, Dodge Ackerman, who had angiosarcoma and rhabdomyosarcoma. To support Gamble, check out his fundraising page.

Other athletes and volunteers assisted him and raised awareness about sarcoma. "I am lucky to have such a great cause and organization supporting me," he says.

-- Suzie Siegel

Educating patients on sarcoma

2011-07-27T15:07:00.000-07:00

Thursday, the Moffitt Cancer Center in Tampa will hold an educational event for sarcoma patients. A number of doctors do this across the country; let's encourage others to follow suit. It's a great way to recognize Sarcoma Awareness Month.

Some events offer support and a good time for patients who want to meet others with the same rare cancer. Others feature sophisticated, up-to-the-minute information, such as the "Ask the Experts: Advances in Sarcoma Treatment and Research" conference May 1 in New York City, presented by the Sarcoma Foundation of America, our sister organization.

As I did in New York, I'll staff a Sarcoma Alliance table at Moffitt's "What Is a Sarcoma? A Team Approach to Care." Other tables will have information on nutrition, physical therapy and social work. Exhibits will open at 4:30 p.m., with presentations by physicians starting at 5.

-- Suzie Siegel

Sarcoma Alliance and 23 and Me

2011-07-07T15:08:00.000-07:00

Recently the Sarcoma Alliance participated in a Sarcoma Community Night organized by 23 and Me. 23 and Me is trying to recruit 1,000 people affected by sarcoma in a genetic research study. Individuals only need to provide a little spit for genetic analysis. The hope that some genetic similarity can be found that will give researchers better insight into the diagnosis and treatment for all sarcomas. So far over 500 people are participating.

Participants on the panel in the community night were Kristen Ganjoo, MD a Stanford oncologist, Eric Nakakura, MD, a UCSF oncology surgeon, Natalie Criou a sarcoma survivor and founder of Beat Sarcoma (http://www.beatsarcoma.org/ ) and Arthur Beckert, Executive Director of the Sarcoma Alliance. As always the best part of the evening was hearing patient stories and the discussions among patients and the panel.

To see 23 and Me’s blog on this evening visit: http://spittoon.23andme.com/2011/07/06/a-recipe-for-disease-research-give-people-tools-add-passion-and-shake/

For More information on 23 and Me and its sarcoma project visit: https://www.23andme.com/sarcoma/

Ziopharm Oncology Awards Grant to the Sarcoma Alliance

2011-07-01T14:20:00.000-07:00

ZIOPHARM Oncology awarded a $5,000 grant in support of the Sarcoma Alliance's Assistance Fund program. The grant will help support program costs and the development of a brochure describing the program. Ziopharm is a biopharmaceutical company engaged in the development and commercialization of a diverse portfolio of cancer therapeutics. The Company is currently focused on several clinical programs. One program for sarcoma is currently in a Phase III trial.

Palifosfamide (Zymafos(tm) or ZIO-201) is a novel DNA cross-linker in class with bendamustine, ifosfamide, and cyclophosphamide. ZIOPHARM is currently enrolling patients in a randomized, double-blinded, placebo-controlled Phase III trial with palifosfamide administered intravenously for the treatment of metastatic soft tissue sarcoma in the front-line setting. The company is also currently conducting a Phase I intravenous study of palifosfamide in combination with standard of care addressing small cell lung cancer and an oral form of the drug for treatment of solid tumors is currently in the advanced preclinical stage of development.

ZIOPHARM's operations are located in Boston, MA and Germantown, MD with an executive office in New York City. Further information about ZIOPHARM may be found at www.ziopharm.com.

On behalf of everyone we serve, a big thank you to Ziopharm.

NCI reports on advances in treatment for GIST and Alveolar Soft Part Sarcoma

2011-06-15T08:08:00.000-07:00

The current issue of the National Cancer Institute's Bulletin (June 14, 2011) reports on advances in treatment for GIST and alveolar soft part sarcoma (ASPS). GIST survival improves with longer treatment with imatinib. For ASPS patients a phase II clinical trial of the experimental drug cediranib, more than half of patients saw their tumors shrink. For the full story visit: http://www.cancer.gov/ncicancerbulletin/061411

Attention: Sarcoma Patients Needed for Study

2011-06-13T09:20:00.000-07:00

The Sarcoma Alliance is providing this information as a service to the sarcoma community. Each person should make his or her own decision about participation.

Synovate Healthcare, a leader in global market research, is conducting a study on soft tissue sarcoma (STS). We would like to invite individuals diagnosed with STS to contact us for possible participation in this study.

Study Purpose: This research is being undertaken to shed more light on the journey of individuals with this condition and understand some of the challenges tied to the availability of support for both patients and caregivers. Your input will enable our client to provide helpful tools to assist new sarcoma patients as they go through the process of diagnosis and treatment. No attempts will be made to sell anything to you. This is for educational purposes only so that others may have an improved experience upon diagnosis.

Recruitment: All interested persons who are diagnosed with STS are invited to call Jody at Schlesinger Associates, 1-866-861-0395 x229. She will help to determine the feasibility of your participation

Participation: Study participation involves completion of a brief written description of your journey from diagnosis to present by using stories, pictures, or other means. After completion of this exercise, you will be asked to participate in a 75-minute phone discussion in which you will be encouraged to share your story. All aspects of the study are completed in the comfort of your own home with all expenses paid. Your confidentiality will be maintained at all times. Only your first name will be used during the phone discussion.

Incentive: Synovate is offering a generous token of appreciation in exchange for your participation on this study. This will be paid out after full participation on the study has been completed

June 28, 2011, Sarcoma Community Event, Mountain View, CA

2011-06-08T09:16:00.001-07:00

Sarcoma patients, survivors and caregivers are invited to join 23andMe for a night of sarcoma education at our Sarcoma Community Event! This event will take place on Tuesday, June 28 from 6:15 - 9:00 PM at 23andMe Headquarters in Mountain View, California. Mix and mingle with fellow sarcoma patients while learning about patient and caregiver support opportunities and 23andMe’s Sarcoma Research Initiative. Engage in informational talks by top sarcoma physicians from Stanford and UCSF as well as patient advocacy leaders. Drinks and hors d'oeuvres will be served.

Event Speakers
Dr. Kristen Ganjoo, Stanford Medical Oncologist
Dr. Eric K. Nakakura, UCSF Cancer Surgeon
Nathalie Criou, Survivor and Beat Sarcoma Founder
Arthur Beckert, Sarcoma Alliance Executive Director

Registration and Reception at 6:15 PM; official agenda will begin at 7 PM.
The event will take place at 23andMe Headquarters: 1390 Shorebird Way, Mountain View, CA 94043.
Registration is complementary. Please RSVP to sarcoma-help@23andme.com. Space may be limited

Miss Brooklyn is at It Again

2011-05-26T13:32:00.000-07:00

Christina Moore, the reigning Miss Brooklyn and contestant for the upcoming Miss New York pageant, organized an amazing dance program and fundraiser benefiting the Sarcoma Alliance and the Miss Brooklyn Scholarship Organization on May 7. The event was a rousing success, featuring performances by more than 30 dancers and dance organizations and packing the auditorium.

Combining her love of dance with her desire to raise sarcoma awareness, Christina developed Performers with a Purpose: Bringing Sarcoma Awareness Center Stage, a unique program she implemented in three Brooklyn public schools. Christina taught dance clinics and spread the joy of the arts to as many students as possible, culminating in the May 7 fundraiser, which featured her prized pupils as well as amateur and professional dancers, including dancers from the Alvin Ailey Dance Studio.

Earlier, Christina organized the “Cupid’s Cure” Valentine’s Day benefit dinner, honoring her aunt, the equally energetic Josephine Schiavo, diagnosed with sarcoma in 2007 and going strong as the guest of honor. Coming up on June 4, Christina will host another fundraiser at Adventurer’s Park Family Entertainment Center in Brooklyn. For more details, visit the Sarcoma Alliance events page.

Sarcoma Drug Clinical Trial Seeking Patients

2011-05-18T15:18:00.000-07:00

Ziopharm Oncology, Inc. has begun a Phase III clinical trial on Palifosfamide, a promising drug for the treatment of metastatic soft tissue sarcoma. This is a multicenter, international randomized, double-blinded, placebo controlled study of doxorubicin plus palifosfamide compared to doxorubicin plus placebo. Patients must be over 18 years old, have documented sarcoma and have not received prior treatment. Certain subtypes of sarcoma are also not eligible, e.g. alveolar soft-part sarcoma, chondrosarcoma, dermatofibrosarcoma, Ewing sarcoma, GIST, Kaposi sarcoma, mixed mesodermal tumor / carcinosarcoma and osteosarcoma.

Patients will receive either palifosfamide or a placebo on days 1, 2, and 3 of each cycle of doxorubicin. A maximum of six cycles can be administered.

The trial will be conducted in over 400 centers throughout the world to about 420 patients. Ziopharm hopes to have all patients enrolled by the end of 2011.

For more information on the trial, eligibility requirements and locations please visit: www.picasso3trial.com .

Attention New York City readers

2011-05-11T14:36:00.000-07:00

On June 4, come to the Adventurer's Family Entertainment Center at 1824 Shore Parkway, Brooklyn, N.Y. for an exciting and fun day for the whole family. Meet Christina Moore, Miss Brooklyn 2011, at an event honoring her aunt and sarcoma survivor, Josephine Schiavo, and benefiting the Sarcoma Alliance and the Sarcoma Foundation of America. The day will feature dance performances by "Performers with a Purpose," face painting, temporary tattoos and much more. For information on the park, go to its website or call 718-975-2748.

Educational conference in NYC

2011-04-20T08:06:00.000-07:00

By Suzie Siegel, board member

The Sarcoma Foundation of America, our sister organization, will present its annual Patient Educational Conference May 1 in New York City.

Patients, families, caregivers and medical professionals will attend the conference 11 a.m to 3:30 p.m. at the Grand Hyatt Hotel, 109 E. 42nd St. Admission is $35, including a buffet lunch and a workbook based on the doctors' talks.

SFA is celebrating its 10th anniversary this year. The Sarcoma Alliance is its "older" sister -- this is our 12th year. Our founders knew each other, and we have always worked together on issues. SFA focuses on raising money for research while the Alliance concentrates on patient education, guidance and support. But there is overlap, of course, with the NYC conference being just one example.

The SFA has kindly allowed me to have a table at the conference this year. Please feel free to stop by, talk about what's new and see if the Alliance can help you in some way.

The expertise of the physicians on the panel is very impressive, and they will answer questions after their talks. Here is the lineup:

Raphael E. Pollock, MD, PhD, FACS
Professor of Surgery, Department of Surgery, M.D. Anderson Cancer Center in Houston
Topic: Advances in Sarcoma Surgery

Dina Chelouche Lev, MD
Assistant Professor, M.D. Anderson
Topic: Advances in Malignant Peripheral Nerve Sheath Tumors

George D. Demetri, MD
Director, Ludwig Center at the Dana-Farber/Harvard Cancer Center and Sarcoma Center in Boston
Topic: Future Directions of Sarcoma Therapy

John S.J. Brooks, MD, FRCPath
Director, Pathology and Laboratory Medicine, Pennsylvania Hospital in Philadelphia
Topic: Advances in Sarcoma Pathology

Robert G. Maki, MD, PhD
Professor, Department of Pediatrics & Medicine, Mount Sinai School of Medicine in New York City
Topic: Emerging Therapies for Sarcoma Patients

John M. Goldberg, MD
Assistant Professor of Clinical Pediatrics, University of Miami Miller School of Medicine
Topic: Advances in Sarcoma Vaccines and Immunotherapy

Jewelry Designer Raises Money for the Sarcoma Alliance

2011-04-05T17:19:00.000-07:00

Coleen Workman is a talented and successful jewelry designer in Salt Lake City, Utah. She has a relative who was recently diagnosed with sarcoma for the second time. She went through all the treatments two years and ago and it has come back. This time, with a vengeance. She has started treatment again and it’s tough. She is only 49 and has two beautiful grand babies. Additionally, her father was diagnosed with pancreatic cancer in December 2009. Her family’s story is much like other people when they get the news. Coleen and her three sisters and spent their time finding out everything they could about these awful diseases.

During this time Coleen started making jewelry for family and friends to keep hope and her father in their thoughts and prayers. She wanted to do more and contacted the Pancreatic Cancer Action Network and was able to display her jewelry on their website. She loves helping them raise money for research and also helping other families to have hope. Her father passed away in August 2010.

Coleen contacted the Sarcoma Alliance an offered to sell some of her beautifully designed jewelry on our website, helping us support those affected by sarcoma. All of her designs are made with the highest quality sterling silver and semi-precious stones. For the Sarcoma Alliance her jewelry is made with a yellow stone called citrine. The jewelry is finished without pits and discoloring. Each piece is shipped in a yellow organza bag with an information card on how to care for it and Never Lost Hope statement. If you would like to see her work and order a piece visit our store at: http://www.sarcomaalliance.org/Donations/our_store.shtml

Made Me Nuclear is Back

2011-03-01T14:15:00.000-08:00

Singer/songwriter/producer and cancer survivor, Charlie Lustman, has completed the first pop record about a cancer experience. Charlie's battle with osteosarcoma in his jaw bone didn't stop him from creating his inspiring collection of uplifting and emotional pop songs. The album entitled, MADE ME NUCLEAR, is available at MadeMeNuclear.Com. He has performed his songs at accross the United States raising awareness about sarcoma and the Sarcoma Alliance. Additional information at: www.mademenuclear.com

April 28, 2011 Oncology Nursing Society, Boston, MA

June 5, 2011, National Cancer Survivor Day, University of Michigan

Brooklyn event raises awareness about sarcoma and money for the Sarcoma Alliance by Arthur Beckert, executive director

2011-02-16T14:15:00.000-08:00

Christina Moore contacted me two years ago, when she was competing for Miss Brooklyn. She wanted to use that forum to help everyone affected by sarcoma. Her aunt, Josephine Schiavo, had successfully battled malignant fibrous histiocytoma (MFH) and has been an inspiration, not only to Christina, but to her family and friends. (Josephine and Christina are in the photo on the left.)

Later, I received a phone call that she came in third but with a spirit not diminished, she still hoped to help us in the future. This year, she entered the contest again, and I received an excited call that she had won!

I detect a strong family trait in Christina and Josephine: positive attitude, never give up, and don’t look back.

On Feb. 12, I attended Cupid’s Cure, the first of a number of events Christina has planned for 2011 to raise awareness about sarcoma and celebrate Josephine’s spirit. The event in Brooklyn, one of the boroughs of New York City, brought together more than 200 people to honor Josephine and support the Sarcoma Alliance. It was a wonderful scene: Tables decorated with red and pink balloons, eight sunflowers (one for each person at the table), a table with beautifully presented raffle items, and a great dance floor and DJ.

Christina warmly welcomed everyone and thanked the many people who helped put together the evening. Josephine followed with a moving account of her diagnosis and treatment and the endless love and support she received from her family and friends. The evening continued with a lovely dinner, dancing and raffle. Prizes ranged from event tickets to jewelry, and an iPad. At the end, everyone left, having had a fun time and experiencing the love, warmth and affection from a community committed to helping and supporting one another. On behalf of the Sarcoma Alliance and all we help, thank you, Christina and Josephine.

Grant Awarded by Genentech

2011-02-09T09:08:00.001-08:00

In January Genentech awarded a $15,000 grant to the Sarcoma Alliance to make improvements to our website. This follows a grant awarded in 2008. This grant will allow us to improve our chat capabilities so that we can periodically invite expert guest participants with a fully moderated discussion. We will also be adding a new care giver section and making improvements to the functioning of our Peer to Peer Program. Finally, we will be updating and reorganizing some of the content in other sections of our website. We are very excited and appreciative of Genentech’s ongoing support of our mission.

Trivalent Vaccine for Sarcoma Trial

2011-02-08T09:29:00.000-08:00

MabVax Therapeutics is actively recruiting patients for a Phase 2 sarcoma vaccine trial who have recently been treated for metastatic sarcoma and whose status is “No Evidence of Disease” or NED. The patients in the study will be randomized to receive either a vaccine that is combined with an immune system stimulant or the immune system stimulant alone. The immune system stimulant is called OPT-821 and is an immunological booster. If the trivalent vaccine can stimulate the patient’s immune system to develop antibodies which recognize and target the GM2, GD2 and GM3 sugars that are over expressed on the surface of most sarcomas, then the patient’s antibodies could attack and kill any remaining sarcoma cells potentially preventing the recurrence of sarcoma. For more information about the trial, please visit the clinical trial overview at http://clinicaltrials.gov/ct2/show/NCT01141491?term=sarcoma+vaccine&rank=1 .

23andMe Achieves Milestone in Building Sarcoma Research Community and Announces Appointment of Sarcoma Scientific Advisory Committee

2011-02-04T10:41:00.000-08:00

The following was adapted from a January 25, 2011 press release from 23andMe. For more information, or to inquire about joining 23andMe’s Sarcoma community please go to http://www.23andme.com/sarcoma.

Leading Personal Genomics Company Engages the Worldwide Sarcoma Community for Research and Welcomes Leading Sarcoma Researchers and Clinicians as Advisors

23andMe’s sarcoma research efforts are well underway with collection of both phenotypic and genetic data from 500 individuals diagnosed with sarcoma already completed. The company is half way towards its goal of building a sarcoma research community of more than 1,000 individuals. 23andMe has also completed its Independent Sarcoma Scientific Advisory Committee with the appointment of leading researchers and clinicians, including Robert Maki, MD, PhD, George Demetri, MD, Judy Garber, MD, MPH, and Mark Robson, MD.

“Members of our independent, external Sarcoma Advisory Committee bring unsurpassed expertise of sarcoma and cancer genetics to our research efforts,” said Anne Wojcicki, 23andMe co-founder and CEO. “We are confident that together, we will meaningfully advance our current understanding of sarcomas.”

Sarcomas are a rare group of cancers that arise in connective tissues (such as muscle, fat, cartilage, tendons and blood vessels) or in bone. It is estimated that there are approximately 13,000 cases of Sarcoma seen annually in the United States. This is an extremely small number compared to the total of more than 1.4 million people who are diagnosed with cancer each year in the United States. The small number of cases seen, the diversity in the biology of each type of sarcoma, and other variables make identifying and understanding causes of Sarcomas particularly difficult.

23andMe’s Sarcoma research efforts first began in April 2010, inviting current and former sarcoma patients to participate by being genotyped and completing surveys about their disease and treatment response through the 23andMe web-based research platform, under approval from an Institutional Review Board (IRB). Participants receive access to the full 23andMe experience, including information about their genetic ancestry as well as access to all 184 health and trait reports at no charge.

As 23andMe collects information regarding these individuals’ experience, environment and response to different therapies, it is anticipated that 23andMe will be able to combine this information with genetic data to find patterns that will help researchers better understand the biology of sarcoma and the impact of various treatments.

"We have already enrolled more than 500 individuals diagnosed with Sarcoma, passing the 50-percent milestone in our goal of building a sarcoma community of at least 1,000 individuals. Through our research platform, we are gathering valuable information about sarcoma and response to treatment from these individuals,” explained Amy Kiefer, 23andMe, Survey Research Manager, PhD.

“This collaborative project is highly innovative, linking sophisticated genomic analyses with patient-reported outcomes and clinical data in people who have had sarcoma at some point in their lives. It is a novel, multidimensional approach to understanding these complex diseases with a mixture of science, medicine and social media,” said George Demetri, MD, Director of the Center for Sarcoma and Bone Oncology at Dana Farber Cancer Institute and Sarcoma Scientific Advisor to 23andMe. “The members of the Sarcoma Scientific Advisory Committee are enthusiastic to advise 23andme to ensure the highest quality data can be generated through this interactive process which brings together current sarcoma patients, long-term survivors of sarcomas, physicians and scientists of several different specialties.“

About 23andMe’s Sarcoma Scientific Advisory Committee
The committee is comprised of independent, external academic advisors, including:

Robert Maki, MD, PhD, is a renowned Sarcoma clinician and researcher. Already a 23andMe advisor, Dr. Maki recently joined The Mount Sinai Medical Center as the Chief of the Pediatric Hematology/Oncology Division, and is also Medical Director of the Sarcoma Cancer Program at The Tisch Cancer Institute.

George D. Demetri, MD, has led the development of several practice-changing clinical research trials for sarcoma and serves as the Director of the Center for Sarcoma and Bone Oncology at Dana Farber Cancer Institute, as well as Director of the Ludwig Center at Dana-Farber/Harvard Cancer Center, and Senior Vice President for Experimental Therapeutics at Dana-Farber Cancer Institute in Boston.

Judy E. Garber, MD, MPH, is the Director of the Center for Cancer Genetics and Prevention at Dana-Farber Cancer Institute and an associate professor of Medicine at Harvard Medical School.

Mark E. Robson, MD, is the Associate Attending Physician of the Clinical Genetics and Breast Cancer Medicine Services at Memorial Sloan-Kettering Cancer Center.

To Our Friends of the Sarcoma Alliance

2011-02-01T12:20:00.000-08:00

The following note and the story below was mailed out for our annual appeal in December. Thank you to all who donated to help us continue our mission of providing guidance, education to everyone affected by sarcoma.

The personal story in this annual appeal newsletter was written by my daughter Alison. She was only 13 when she was diagnosed with alveolar rhabdomyosarcoma, a dangerously aggressive cancer with only a 50 percent survival rate. Imagine the horror of flipping a coin to determine whether your child would live or die; that was what it was like for me 14 years ago.

Fortunately for our family, Alison was in the half of children with a good outcome. However, her story did not start out well. Like many others with sarcoma, she was misdiagnosed, delaying the start of treatment. Her initial surgery was done incorrectly, potentially increasing the risk of spreading the cancer. By extreme good luck and a lot of difficult research, we overcame this dreadful beginning by doing almost everything else correctly. We sought out a second opinion from a sarcoma expert and changed chemotherapy as a result. We found a surgeon who knew sarcomas and removed the tumor with clean margins. We traveled to have radiotherapy at a hospital with extensive experience in sarcoma.

It shouldn’t take blind chance or extensive research for a person newly diagnosed with sarcoma to obtain the best possible treatment. The diagnosis of a cancer you have never heard of is so horrifyingly numbing that it’s difficult to know where to turn. You feel hopelessly alone. And that’s why the Sarcoma Alliance exists: to provide hope; to empower the person affected by sarcoma; to help them identify the best places to obtain treatment; to provide grants to seek out second opinions from sarcoma experts; to connect them with others who know exactly what they are going through. And we provide all our services for free.

And that is why the Sarcoma Alliance is asking for your generous support to continue to provide these essential services. The Sarcoma Alliance is the only national organization whose sole mission is to provide information, guidance, and support to people affected by sarcoma. As the report by Arthur Beckert our Executive Director indicates, we have provided our services to people in all 50 states of the U.S. and in 21 countries around the world. It is only through past donations that the Sarcoma Alliance has been able to provide hope and information to thousands of people affected by sarcoma, letting them know You Are Not Alone.

Our best wishes to you and your loved ones for a happy, prosperous, and most importantly, HEALTHY 2011.

Joan Darling
President, Board of Directors

Ali's Story

2011-02-01T12:15:00.000-08:00

I remember the night I walked into my parents’ bedroom at 10 o’clock and announced with fear and force, “I have cancer.” They looked at me as any parent would with a 13 year old daughter who was perfectly healthy and extremely active. But I had found a lump, and, for whatever reason, I knew what it was.

My late night announcement was followed by a visit to my doctor in an effort to appease me. Mission accomplished; I was diagnosed with a cyst. I remember expressing to my doctor, with a sigh, how relieved I was because I thought it was cancer. I was reassured that all the signs pointed to a cyst. The location, my age, the size, and no other symptoms. Several months later, when it hadn’t shrunk, I went in for surgery to remove the cyst. The following Monday my entire family was hit with the news that everybody (except me) had been wrong. It was cancer.

I was diagnosed with rhabdomyosarcoma, which had grown quite large in the time that had lapsed due to the misdiagnosis. It was contained within my pelvic cavity, and at stage 3 it was large, but somehow, luckily, it hadn’t spread.

Thirteen is a tough age to have cancer. For one, there’s the social component. I tried going to school after my first round of chemotherapy, but two hours into my first day back I realized that it wasn’t going to work. I couldn’t have asked for anything more from my friends and family. My friends scheduled all birthday parties and weekend get-togethers around my “good week” – the one week out of every three (or four) when my immune system and energy level was high enough to socialize. My family was willing to drive my anywhere, anytime. This included several weekend trips home to Lincoln Nebraska from my 2 month stay in Rochester Minnesota in winter blizzards and fog so that I wouldn’t miss any critical, life-altering, earth-shattering eighth grade social events. In retrospect I sometimes wonder if these drives were a greater risk to my health than the cancer itself. But on a serious note, these efforts meant a lot to me. Spending time with my friends helped me remember that there was more to my life than nausea and mouth sores and low platelets. Life didn’t have to be put on pause. I could still laugh until I cried with my best friend, stress over what to wear, experience my first crush.

And then there’s the hair… I remember the morning I woke up in the hospital a few weeks after my first round of chemotherapy, and, thinking nothing of it, ran my hands through my hair. When I pulled my hand away I saw that a large clump of hair had come with it. That was one of the first days I cried about any of this. I thought I wouldn’t care when my hair fell out, but seeing it there in my hand changed everything. I think that was when reality hit. This wasn’t a dream. This wasn’t a joke. This thing inside of me was going to change my life.

Thirteen is also a tough age because every child is at a different maturity level. I was definitely mature for my age. I completely understood what death was, that I had a legitimate chance of dying, and that critical decisions had to be made to provide the best possible chance to survive. I have amazing parents who fought tirelessly for me, always keeping me involved in the decision making process. The doctors, however, were another story. They were incredible doctors: considerate, compassionate, and dangerously intelligent. But I spent a lot of time convincing them that I was entitled to know what was being done with my body and my life. I know I made them see that my opinion mattered, and I hope that I taught them something about the likes of thirteen year old girls.

Overall I went through 12 rounds of chemotherapy, 28 doses of radiation, and 5 surgeries. I was treated at Children’s Hospital in Omaha Nebraska and the Mayo Clinic in Rochester Minnesota. After a year of treatment I was cancer free, and have stayed cancer free for almost 14 years.

Having cancer absolutely changed my life. I don’t think it changed who I am, but I do think it changed my view. I will forever be plagued by the side effects of the drugs that saved me, and I still get nervous when I find any lump or bump. But, most of all, I love and cherish the qualities I’ve acquired through the experience. It’s been said so many times in so many ways, but it’s best put in one word: Perspective.

I’ve since graduated from high school, college, and most recently law school. I’ve stood as a bridesmaid at some of my closest friends’ weddings, swam with dolphins, traveled to Europe and India, and cried over the loss of a loved one. I’ve experienced the thrill of getting my drivers license, falling in love, buying my first home, and walking down the aisle to say “I do.” I think all of these events would have happened regardless of whether the cancer had. But they were that much better after the fight.

Talk on sarcoma Feb. 11 in LA

2011-01-28T12:40:00.000-08:00

Andrew Hendifar, MD, will discuss the latest in the diagnosis of and treatments for soft-tissue and bone sarcoma Feb. 11 at the Cancer Support Community, Benjamin Center, 1990 S. Bundy Drive, Suite 100, Los Angeles 90025. The lunchtime talk is free, but call 310-314-2555 for reservations.

Our executive director reflects on our changes

2011-01-27T14:21:00.000-08:00

As the Sarcoma Alliance enters its 12th year, I'm reflecting on my exciting and rewarding six years as executive director. When I started, the Alliance was essentially run by a volunteer Board of Directors made up of family and friends of the founders, Suzanne Leider and Wendy Sommers. The organization had, at times both painfully and happily, grown beyond what an all-volunteer “staff” could handle. I was hired to take much of the day-to-day operations off the shoulders of the board and to grow it to better serve those affected by sarcoma. The transition from an all-volunteer organization to one with paid staff has been an adventure for everyone involved.

The board was, and continues to be, incredibly diverse in their skills and all extremely committed and passionate about the organization. At first, I was watched like a hawk. It was difficult for board members to let go of something that had been such an all-consuming part of their lives. As time went on and the Alliance continued to be effective and successful, my daily phone calls and contact became less frequent.

We now have a part-time office manager, Pam Cresta, and we pay a couple of others, as needed, for computer help and other specialized skills. Although the staff does a lot, the Alliance still depends on the skills and time of board members and other volunteers. It is always interesting working at the pleasure of the board while, at times, having to remind them of projects that can be done only with their help. Who works for whom is a question we are constantly trying to answer.

We are proud of the many accomplishments during the past six years. We are now on Facebook and have an active and vibrant blog. We have made major changes to both the content and look of our website. Our Peer-to-Peer Program, begun almost four years ago, has grown to include people from all 50 states and 21 countries. We have partnered with a number of organizations so our voice is better heard in Washington as the debate continues about health-care coverage and funding for research of rare diseases such as sarcoma.

The last two years have been especially challenging for the Sarcoma Alliance, as they have for most individuals and organizations, small and large, in the U.S. We have tried to find ways to cut costs without impacting any of our core programs and services. We have cut back on travel to conferences that we use to educate providers about what we do and how we can help them help their patients. The mailed, paper newsletter was the single greatest cost. We are beginning to use an electronic emailed newsletter and report on all of our activities and services on our blog. I hope you visit this blog and our website on a regular basis to see the changes. Finally, please take a moment to remember all those who work so hard to help, and do what you can to support us. We will continue our unwavering focus to provide guidance, education and support to everyone affected by sarcoma. Thank you.

-- Arthur Beckert, Executive Director

Running for support

2011-01-01T00:01:00.000-08:00

"This winter, I am temporarily trading my paddling arms and my steering blade for my legs and a pair of running shoes," writes Aimee Spector, co-captain of our Ocean of Hope teams. As an O2H member, she will compete Jan. 15 in the Avalon 50, "one of the country's most challenging and scenic 50-mile runs."

The run will be on Catalina Island, near Los Angeles. Race Director Mike Bone promises:

No cars, no smog, just great terrain, incredible views, fascinating historical sites, a well-organized race, nice people, great food ... and even an occasional buffalo sighting.

At the end of November, Aimee wrote:

I have 50 more days to train, 50 miles to run and my goal is to raise $5,000. All of the money I raise will fund second-opinion grants, which is one of the most crucial parts of saving a sarcoma-cancer patient's life. Running 50 miles is easy compared to what a cancer patient has to go through.

To support Aimee and sarcoma patients, click here.

-- Suzie

Why we do what we do

2010-12-31T11:40:00.000-08:00

The following are from thank-you letters we've received, often as a result of grants to individuals for second opinions from sarcoma specialists. Every day we provide people with the best information and support that we can. At the end of the year, we want to thank everyone who has donated time and money to help us in this mission.

My husband and I would like to thank you and those involved with the Sarcoma Alliance for the kind generosity and assistance you all have helped us with. My husband's battle continues, but I know that one day my husband will be free from this disease. Thank you again for the help, we deeply appreciate everything.
Thank you very much for sending us a reimbursement check to help cover some of our expenses. The Alliance's generosity is very much appreciated. Keep up the good work as we need as much support as possible to fight this horrid disease.
My family and I thank you for your generous financial support. This helps support my transportation to Houston, Texas, from Ohio, something the research trial requires. It makes the battle I'm forced to fight that much easier knowing people such as the Sarcoma Alliance are able to help.
I want to thank you from the bottom of my heart for this wonderful gift. I was informed about your program through the social worker at Dana-Farber Cancer Institute in Boston, MA, and I was amazed that the program existed. Now, I am a recipient and I am so grateful to your organization for helping people like me with these very costly expenses.
Sometimes cancer can be such a lonely disease but your concern and help give me hope for the future.
Blessings to you and the Sarcoma Alliance; you make a difference in people's lives.

Donations Come to Us From Unexpected Directions

2010-11-19T13:38:00.000-08:00

We recently received a donation followed by an email with the behind-the-scene reason. Following is an edited version; the name of the donor and company are not as important as the story it tells and the lesson for all of us.

I have to tell you the story behind the $500.00 donation you received via PayPal. Seven years ago I was diagnosed with Synovial Sarcoma of the Larynx. I had to have my larynx removed and had a total laryngectomy. I now speak with a prosthetic voice valve. It’s a gravelly voice, but tons better than using an electro larynx, which sounds like a robotic voice.

Last Friday I received a call from a company in England. The woman who called was unaware that her call had dropped into my voice mail. She began talking to the person who was sitting next to her, laughing and commenting on my voice mail greeting and the way my voice sounded. She called it a ‘creepy’ voice and couldn’t stop laughing. I wasn’t offended because I realized that she was unaware of the reason why I talked like that. But I felt that I should call the company back and just make them aware of what happened so they could avoid any possibility of it happening to someone who would be offended or insulted.

I spoke to the Director of the company who took immediate action. He asked me if I had a favorite charity or organization, and his company would make a donation. I told him that I really felt uncomfortable with him doing that, because I really wasn’t offended. I just wanted him to be aware of what this person is doing on the phone. He gave me his e-mail address and asked if I wouldn’t email him later in the day with the name of an organization.

I thought about it for a couple of hours and gave him the information for the Sarcoma Alliance. My wife and I have always wanted to do more for your organization and I felt this would be one way to express our appreciation to you. Thank you for being there and helping those with all types of Sarcoma!

Sarcoma on 'Grey's Anatomy'

2010-10-15T10:15:00.000-07:00

Last night's episode of "Grey's Anatomy" featured a young ballet dancer with osteosarcoma. His chemo didn't work, and it appeared as if his only option was amputation. He and his parents argued that dance was his life, and he couldn't live without it. He insisted the doctors watch him perform.

Moved by his lyrical performance, the doctors researched and found a technique in which they could remove bone, radiate it and put it back in. They told him that he could continue dancing, and if the surgery failed, they could still do amputation.

The media gives so little attention to sarcoma that I'm grateful when a show like this spotlights issues facing patients. But I wish we could get the word out that patients can get second opinions from comprehensive sarcoma centers, where doctors should know the latest treatments. You don't have to dance for them.

The Sarcoma Alliance gives travel grants up to $350 if you have to go out of town to get a second opinion. Because "Grey's Anatomy" is set in Seattle, this young man didn't need to go far. He could have gone to the Seattle Cancer Care Alliance, where Dr. Ernest "Chappie" Conrad, an orthopedic surgeon, heads the sarcoma department.

Perhaps this episode of "Grey's Anatomy" will give hope to patients that new treatments are being developed. They also should know about clinical trials.

As someone who has had life-changing surgery, I know treatment decisions can be heartrending. Often, we feel like, if we just try hard enough, we can find a way to go on with our lives as if nothing happened. That happens for some people. But many of us have to learn to live with changes. We have to find new ways to enjoy life and to make our lives meaningful.

For some people, amputation is the best option to save their lives. Whatever option is best, it can be helpful to talk to someone who has been through what you have, or what you're considering. That's why the Alliance has a discussion board, live chat and patient stories, in addition to other resources. For example, we have a section for youth with sarcoma.

I hope to add to this post as I get more information. I especially want to talk to a friend who had her leg amputated below the knee, and now dances the tango.

-- Suzie Siegel, board member

Lanakila winning team

2010-10-02T10:44:00.000-07:00

This is a photo of members of the Lanakila Outrigger Canoe Club receiving their first-place award for the U.S. Outrigger Championships from Ralph Morrow Jr., former mayor of Avalon and a cancer survivor.

"I was the grand marshal in 2005. I have been their official Avalon cheerleader for many years … since 1994," he said. "I enjoy being around these folks; they keep me young."

The paddlers raised almost $10,000 for the Sarcoma Alliance this year. (Here's the donation page.) Please see the Sept. 11 post for more information.

The team captain is Aimee Spector, with members: Katy Arnold, Jeane Barrett, Kate Eveleigh, Lise Fernow, Jean Geddes, Alice Haas, Dani Hart, Jessie Kennedy, Kim Lanie, Maki Myazaki, Tanya Muhle, Laurie Parker, Jill Schooler, Heather Suskin, Dawn Suskin, Lorie Vos and Lisa Wilson.

Staying in the race

2010-09-29T16:36:00.000-07:00

A lot of sarcoma patients can identify with Phil Ambrose, I bet. He came in 80th in the Catalina Classic Paddleboard Race last month near Los Angeles. He races for the Ocean of Hope (O2H) team, the Sarcoma Alliance's biggest fundraiser. The names of Wendy Sommers and Tracy Talley are painted on his board. His photo is above.

"The water conditions were good, but it wasn't as fast as last year," said Arthur Beckert, the Alliance's executive directior. (He's in the photo at right with Joe Bark, who has been great about giving us boards to raffle.) The wind picked up and the water got choppier as the day wore on, making it harder for the people who were already behind. Phil didn't give up. Like many sarcoma patients, he found the strength to keep going.

So far, the Catalina Classic has raised $46,600 for the Alliance. The paddlers raise money, as do sarcoma survivors, family members and friends. For $3,000 raised, a paddler will put someone's name on his board.

Mark Schulein, the biggest fundraiser, placed 23rd. On his board are the names of Suzanne Leider and Bob Chambliss. Bob's mother, Kathy Chambliss, is in the photo on the right with Mark. David Stringer, who came in 45th, honored Doug Harden and Jon Rowland. His photo is below. Joel Pepper, the newest member of the O2H paddlers, placed 48th. He raced in memory of Janet Lasley, and his photo is at the end.

Team Captain Fred Sardisco and Zach Lenz didn't race in the Catalina Classic this year, and Scott Gamble races in Hawaii. The volunteers on the beach were: Claude Alexander; Arthur and Molly Beckert; Betsy Haas-Beckert; Kathy Chambliss; Ali and Joan Darling; Lisa Harden; Ade Lawal; Philip Leider; Joan Mousseau; Dave Murphy; Ellen Silver; Aimee Spector; and Michael and Marites Tullius.

Sandy Williams baked cookies, and Christine Tope made pies and cookies. Barney Tong took the photographs; more can be found on Picasa. If I left anyone out, please leave a message for me in the comments. Our special thanks to all who helped!

Celebrating every moment

2010-09-28T21:08:00.000-07:00

By Joan Darling

Fourteen years ago this month, my daughter Ali had the operation that would change our family's life forever. On Sept. 6, 1996, Ali had surgery to remove an "abcessed cyst" that turned out to be the tip of an iceberg of a tumor. Everyone, even her doctors, were shocked. She had been ridiculously healthy, having played four games in a select soccer tournament the weekend before. A week of tests later, it was determined that she had stage 3 group 3 alveolar rhabdomyosarcoma.

I honestly cannot remember the date of her last treatment, probably because the cancer journey never really ends, but I will never forget the date we started on that journey.

It's worth retelling what we went through that year, because it wasn't an easy year, by any means. Ali started off on what would have been the equivalent of the Intergroup Rhabdomyosarcoma Study Group (IRSG) IV standard protocol, which was VAC (vincristine, dactinomycin, cyclophosphamide) with high-dose C. She had a very hard time on that treatment, and within three rounds of chemo had lost 20 of her original 116 pounds, due to a week of only marginally controlled nausea followed by a week of severe mucusitis throughout her digestive tract, both of which greatly limited her ability to eat. As a result, she had to be put on TPN (total parenteral nutrition) to stabilize her weight.

The ideal treatment would have been second-look surgery to remove the remains of tumor after chemo reduced the bulk, but the surgeon in Omaha was still unwilling to operate even though only shreds remained. The tumor had been wrapped around nerves that controlled bladder and bowel, and he wasn't comfortable trying to remove it all without doing considerable damage to them. As a result, we looked for a second surgical opinion, and went to the Mayo Clinic. The surgeon there was very reassuring that he could remove the tumor completely, which he did with clean margins. In addition, we met Dr. Carola Arndt there, and we switched chemo treatments to VAdrC/IE (Vincristine, Adriamycin, Cyclophosphamide /Ifosfamide, Etoposide), the standard Ewing's protocol. Ali also started on high-dose glutamine to control mucusitis, and managed to start eating more.

The worst part of treatment was during concurrent radiation and chemo. Ali developed third-degree radiation burns, and had to be hospitalized for about a week. The pain was excruciating, and she needed a fentanyl patch plus PCA (patient-controlled analgesia) morphine to control it. I still don't know how she didn't get a massive infection at the time, but somehow she got through it. When her counts started to recover, so did her skin, and it grew back so quickly that I could almost SEE it grow back.

She's been cancer-free since the second-look surgery, which was on Christmas Eve, 1996. Ali says it was the worst Christmas EVER. Two visits from Santa Claus don't mean much to a bald 13-year-old girl stuck in a hospital bed who is only one-third of the way through a difficult yearlong treatment for a life-threatening disease. But in some ways, it wasn't all that bad. True, the family was staying in a room in the Ronald McDonald House in Rochester, Minn., rather than in our own home. But we learned what was really important that year. Not the presents, not the tree, not the cards. It was cherishing each day and celebrating the small triumphs of life, making the most of every moment we have.

---------------

Ali is in the middle of this photo shot at last month's Catalina Classic, with Sarcoma Alliance board member Marites Tullius on the left and Betsy Haas-Beckert on the right. The two nurse practitioners are wearing the red Ocean of Hope (O2H) T-shirts.

O2H wins at U.S. Outrigger Championships

2010-09-11T16:26:00.000-07:00

The women's team from the Lanakila Outrigger Canoe Club, competing as part of Ocean of Hope, won first place today in the U.S. Outrigger Champion ships. What a great day for the team and for sarcoma patients.

Today's 27-mile, open-ocean race launched from Newport Beach and ended on Catalina Island. First held in 1959, the Catalina race is the ultimate outrigger canoe race in California. Teams compete from all over the state, plus Canada, Hawaii, Guam and Japan.

"As members of the Ocean of Hope, we focus our training, racing and fundraising efforts on the Catalina Crossing," captain Aimee Spector says. "Every stroke of those 27 miles to Catalina is dedicated to the sea of people affected by cancer."

Other team members are: Katy Arnold, Tanya Muhle, Lise Fernow, Lisa Wilson, Kim Lanie, Jessie Kennedy, Kate Eveleigh, Jill Schooler, Jeane Barrett, Heather Suskin, Dawn Suskin, Dani Hart, Alice Haas, Laurie Parker, Lorie Vos, Jean Geddes and Maki Myazaki.

For more history, see this page. You can give a donation on behalf of the team or click on the names on the team page (at the previous link) to donate to individuals. It's not too late.

The members' pages explain their involvement. An example is new member Jean Geddes, whose photo is on the right. She says:

I have been paddling since I was a little kid. I have always loved being on the water, training hard, and competing. It has brought so much joy to my life. But training and racing are not the only reasons for paddling. I am a team member of the Ocean of Hope (O2H), a group of paddleboarders and canoe paddlers who give back to the community by dedicating our time to helping others.

O2H was created to support the Sarcoma Alliance, a nonprofit group that is the gathering place for those affected with sarcoma, a devastating cancer that is difficult to diagnose and even harder to cure. People who suffer from the disease and their families have a place to find guidance, education and support, as well as finding current medical information and treatment options, and to network with others.

My Aunt recently lost her battle with cancer. I saw the devastating effect of cancer not only on my aunt but my whole family. I hope that my efforts to raise money through training and racing will bring help, hope, and some day a cure.

Raffle for 2 paddleboards Sunday

2010-08-24T09:22:00.000-07:00

Bark! Bark! Bark! Bark! Bark! Bark! Bark! Bark! Bark! Bark! Bark!

This is my salute to Joe Bark for donating paddleboards for our Ocean of Hope raffle. Two winners will be chosen at 6 p.m. Sunday after the Catalina Classic, at a party at the Sangria restaurant, 68 Pier Ave., in Hermosa Beach, Calif.

You don't need to be present to win. You can still send checks made out to the Sarcoma Alliance to: Aimee Spector c/o Ocean of Hope, 1714 Havemeyer Lane, Redondo Beach CA 90278.

"There are only 2,000 tickets being sold," Aimee says. "So, the more you buy, the better your chances of winning."

Steve Reidy, of Westlake Village, won a standup board March 7 after the Cold Hands Paddle. Aimee's 7-year-old son, Slade, won the traditional 14-foot paddleboard.

"No, the raffle wasn’t rigged! His ticket was picked fair and square," Aimee says, with good humor. Slade decided to put the board back into the raffle for Sunday.

Joel Pepper joins O2H for the Catalina Classic

2010-08-17T07:43:00.000-07:00

Joel Pepper decided to compete in the Catalina Classic Paddle-board Race to help sarcoma patients -- before he knew that sarcoma was the cancer that killed a family friend this year.

Ocean of Hope stickers on paddleboards caught his eye last year. O2H team members compete in ocean races to raise money for the Sarcoma Alliance, which provides guidance, education and support to patients, families and friends.

Joel was looking for an organized team with nonprofit status. He emailed Arthur Beckert, executive director of the Alliance, "to make sure this wasn't a scam using cancer to pad people's pockets. When I got his response that this charity was about helping cancer patients and not administrators, I was very interested. I nearly paddled for O2H last year."

Instead, he competed in the Classic to raise money for his friend Lisa Griewisch, now in remission from leukemia. This year, however, he will join 10 O2H paddlers in the 32-mile race. They can count on at least 20 crew members on boats and 30 on Manhattan Beach, Calif. This is the 11th year that the team will compete in the Classic, its biggest fundraiser.

I asked Joel what led him to paddleboard races.

"I got tired of surfing terrible waves just to be in the water every day. There were days where I'd take out a longboard and just paddle for exercise up and down the beach instead of dealing with our meager summer surf. I wound up buying a SUP from Joe Bark, and then I realized how miserable it is to paddle a SUP into the wind! I demo'd a prone board for the first time the day after the 2008 Catalina Classic. Went 8 miles with no rash guard, out around the r10 buoy. Came in with a bloody chest from the pad rubbing, but I was hooked."

He runs races in the winter and then starts paddling in March,

"building to the first crossing of the year in June, the Rock 2 Rock race. The summer means more and more miles. My max week this year was 2 weeks ago, with 49 miles paddling, 5 miles running and 2.5 miles swimming. Everything revolves around training for those few really big weeks. Now it's winding down. Maybe 20 miles per week to let the body and mind recover ..."

Joel, who lives in Redondo Beach, will race in honor of Janet Lasley, who died in May in Princeton, N.J.

"My buddy's Aunt Janet's passing this year was a tough one. We went to the Jersey Shore with their family growing up, and Janet was the best person ever: full of energy, positive, upbeat at all times, extremely successful and loved by all. She gave me a new perspective on what being an adult could be. It's not as if we were ever particularly close, but I always held her in really high regard as someone to be like. She fought and clawed and got cut to hell all the time for years after [being diagnosed], fighting tooth and nail to see her oldest become a teenager at least.

"I've got 3 little kids of my own now (8.5 months, 2.5 and 3.75), and her situation pulled at my heart strings more and more as it went on and finally ended a few months back."

Janet had survived for more than 12 years with leiomyosarcoma, a cancer of the smooth muscles. "I never knew it was a sarcoma until today when I had to ask what specific type of cancer it was," Joel wrote. "Quick Google search = disturbing. Nature is ruthless." I got chills when I read his email because I'm an 8-year survivor of leiomyosarcoma.

Many of us can identify with the way Joel describes life on the ocean:

"Learning to deal with adversity/pain/discomfort. Finding strength you never knew you had. Coming to grips with the fact that there are big fish in the ocean that may kill you at any time if they so decide, so you may as well not worry about it and just keep paddling. Getting to really know your paddling partners. Making friendships with people that you KNOW you can count on. Feeling the difference attitude makes in life first-hand, when you go from feeling like you can't go another stroke to feeling like you could paddle to Japan and back when a pod of dolphins decides to swim around and under you in an early-season paddle.

"I seriously feel like I owe everyone out there sitting in chemo, radiation, disability and poverty to just suck it up and do it."

The O2H paddlers owe us nothing, and that's why their generosity is so amazing.

-----------

If you want to donate for the race, click here. On that same page, you also can search for an individual paddler. Joel's page is here.

In the top photo, Joel faces the Palos Verdes peninsula. Next is family friend Janet Lasley. Joel's kids, Erin and Owen, accompany him in the bottom photo.

-- Suzie Siegel, board member

Catalina Classic coming

2010-08-15T15:22:00.000-07:00

This is a photo of Joel Pepper at the end of last year's Catalina Classic. This year, we're delighted to have him paddling for the Ocean of Hope team, which raises money -- and morale -- for us.

I'll post more details shortly, but I can't resist these photos of the ocean. For me, summer has been one long hot-flash. Some of you know what I mean!

-- Suzie

Free phone workshop on soft-tissue sarcoma

2010-08-04T11:15:00.000-07:00

Mark your calendars for CancerCare's free telephone workshop, "Treatment Update on Soft-Tissue Sarcoma," 1:30-2:30 p.m. Eastern time on Tuesday, Sept. 21. The speakers will be:

Jeffrey D. Wayne, MD, FACS, Associate Professor of Surgery, Chief, Melanoma and Soft Tissue Surgical Oncology, Division of Gastrointestinal and Oncologic Surgery, Northwestern University, Feinberg School of Medicine, Associate Medical Director, Robert H. Lurie Cancer Center

Mark Agulnik, MD, Assistant Professor, Feinberg School, Division of Hematology/Medical Oncology

Thomas F. DeLaney, MD, Associate Professor of Radiation Oncology, Harvard Medical School, Associate Radiation Oncologist, Department of Radiation Oncology, Medical Director - Francis H. Burr Proton Therapy Center, Co-Director, Center for Sarcoma and Connective Tissue Oncology, Massachusetts General Hospital

Carolyn Messner, DSW, MSW, Director of Education and Training, CancerCare.

The speakers will give an overview of soft-tissue sarcomas and discuss the current standard of care and new treatment approaches, symptom and pain management, clinical trials, and much more. The half-hour presentation will be followed by a question-and-answer session, moderated by Messner.

Click here to register, or call 1-800-813-4673.

Scott Gamble wins for sarcoma

2010-07-28T17:52:00.000-07:00

Representing the Ocean of Hope, Scott Gamble of Honolulu won third place in his division in the prestigious Molokai to Oahu Paddleboard World Championship this week. Hawaii News Now has interviews with paddlers; Scott's interview starts at 1:49 minutes.

"He did great! The race was windy and a bit rough, but the paddlers had the wind and current going with them, which helped," team captain Aimee Spector said. "The Ocean of Hope tent raised a lot of awareness that day! We sold T-shirts and bracelets and gave away stickers. We are definitely looking forward to next year."

Before the race, Molokai2Oahu.com, Wet Feet Hawaii and Hawaii News Now reported on Scott. Afterward, the fourth-place winner mentioned Scott in this account. The Sarcoma Alliance is grateful for the money O2H raises, but the awareness is invaluable.

Teen with rhabdo gets his wish

2010-07-27T17:39:00.000-07:00

For several years, ESPN has been profiling children with life-threatening medical conditions and granting them sports-themed wishes in collaboration with the Make-A-Wish Foundation. These profiles are featured on the "My Wish" segments on ESPN's Emmy-winning SportsCenter.

Last week, the series featured Brett Lisikatos, a teenager in upstate New York, diagnosed with stage 1 rhabdomyosarcoma and now in remission. The program chronicles Brett's challenging treatment and the support he received from his family and friends. ESPN then offered Brett a chance to meet his hero, motocross racer and X Games gold medalist Travis Pastrana, and receive lessons in extreme motorsports. They shared experiences of adversity, determination and perseverance.

Ocean of Hope competes in Hawaii

2010-07-08T18:56:00.000-07:00

Scott Gamble is a lot like his cousin. “He was an ocean guy ... loved surfing, paddling, fishing. Loved Hawaii.”

But two rare cancers, angiosarcoma and rhabdomyosarcoma, cut short Dodge Ackerman's life at 22. This year, Gamble signed up with Ocean of Hope, the largest fundraiser for the Sarcoma Alliance.

“I joined O2H because I wanted to help spread the word about their amazing cause,” says Gamble, 33. I am sure both [my cousin] and his family would have benefited greatly from the resources that O2H and the Sarcoma Alliance now provide.”

O2H captain Aimee Spector of Redondo Beach, Calif., says the team will have at least six paddlers in the Molokai to Oahu race. The other five are from the Los Angeles area.

Last year, Gamble placed third in the race. He won first in the 2009 Dukes Hawaii Championships, and second in the 2010 Battle of the Paddle Distance Race. Because he lives in Honolulu, he says, “the Molokai crossing means a lot to me. It is both a mental and physical test ...very grueling, yet rewarding at the same time. It is a great opportunity to not only cross one of the most prestigious channels in paddling, but also meet all the great watermen and women that enjoy the sport of standup paddling as much as I do.

“I got into standup about two years ago and I have been hooked ever since. I really enjoy downwind distance paddling because it combines two activities that I love: paddling and surfing. I really enjoy being out in the open water with nobody around just trying to read and then surf the ocean open swells. Standing on a board versus sitting in a canoe gives a whole different perspective to understanding the water.”

Ocean of Hope Gala was a great success!

2010-07-04T15:37:00.000-07:00

These photos are from the O2H Gala June 12 in Palos Verdes, Calif. It looks like a great time, doesn't it?

The Lanakila Outrigger Canoe Club hosted the party, organized by O2H team captain Aimee Spector. That's her on the far right, holding up a beer, donated by the Kona Brewing Co. Next to her are teammates Nancy Huh and Dani Hart. Below is team member Tony Hart, the night's bartender.

The gala, which Spector hopes becomes an annual event, brought out local residents as well as paddlers and supporters from all over the South Bay area to enjoy great catered food from Kitchen Harmony, Kona beer and a night of dancing to the tunes of Redondo Beach band Barley Legal.

"We raised over $4,000 in one night," Spector says. "The Sarcoma Alliance is not a big, corporate organization. It does not have major sponsors or huge overhead costs. They rely on grassroots efforts such as the Ocean of Hope to help. 100 percent of the donations we get go directly to helping cancer patients help themselves through education, second opinions and peer networks.

"Being a team member of the Ocean of Hope means working with a great group of paddleboarders and canoe paddlers who give back to the community by dedicating our time to helping others. If you haven't already supported us, and you'd like more information about the Ocean of Hope campaign, the Sarcoma Alliance, or learn about any of the awesome paddlers that are part of the team, please click on our websites. Team members also raise money through fundraising pages on Active.com. You can view these pages and meet team members at www.sarcomaalliance.org/oceanofhope. Click on 'Support the Outrigger Team' or 'Support a Paddleboarder.' The money our team raises through training and racing can help cancer sufferers and survivors find hope, life and some day, a cure."

O2H members will compete at Hennessey's U.S. Paddling Championships July 10 in Redondo Beach and the Catalina Classic Aug. 29 in Manhattan Beach. Come on out!

O2H gala tonight

2010-06-12T15:00:00.000-07:00

The Ocean of Hope paddlers from Lanakila Outrigger Canoe Club are hosting the Ocean of Hope Gala tonight to raise money for the Sarcoma Alliance. The event, which organizers plan to hold each year, will be at 6:30 p.m. in Palos Verdes, Calif. With the support of Paul Hennessey, Kona Brewing Co., Pyramid Beer, San Pedro Brewing Co., Joe Bark Paddleboards and a local band, the organizers hope to raise more than $6,000. For more information, or to donate, click here. We are grateful for the support!

Magic Mineral Broth

2010-05-29T12:46:00.000-07:00

Gisele Barber, founder of Personal Cuisines in Sunnyvale, Calif., has offered to share recipes to improve the lives of sarcoma patients. What a yummy gift!

“Her passion to find new and healthy ways for the selection and preparation of food and meals is drawn from her experience as a survivor of colon cancer,” says her Web site.

The recipe below comes from "One Bite at a Time" by Rebecca Katz, a senior chef with the Commonweal Cancer Help Program.

“I'm a big fan of hers, and she has given me permission to use her recipes,” Gisele says. “Every recipe in this cookbook is wonderful!”

After her husband brought it to her attention, Gisele hurried to a bookstore. “I clutched the book to my chest like I had just purchased a bar of gold and cried all the way home. It was very emotional for me and still is because I remember the complications while going through chemo. The medical professionals didn't advise me of what to eat. They just told me that I would be very sick. Unfortunately, it was an awful experience with me ending up in the hospital with my intestines collapsing and again ... there was nothing they could treat me with. I'm forever grateful for this book and Rebecca's hard work because she has now made the journey with chemo/radiation so much easier.”

The recipe below makes a broth rich in trace minerals, potassium and electrolytes to help nourish the body, Gisele says. “It is wonderful for flushing out toxins and nourishing damaged cells and stimulating the taste buds. Drink this broth as you would a cup of tea or use as a base in soups and stews. I recommend freezing what you don’t use in 2-4 cup containers for future use.”

Magic Mineral Broth

6 unpeeled carrots with half of the green tops, cut into thirds
2 unpeeled medium yellow onions, cut into chunks
1 leek, both white and green parts, cut into thirds
1 bunch celery, including the heart, cut into thirds
4 unpeeled cloves garlic, halved
½ bunch fresh flat-leaf parsley
4 medium red potatoes with skins on, quartered
2 Japanese or Hannah’s yams or sweet potatoes with skins on, quartered
1 Garnet yam with skins on, quartered
1 tablespoon sea salt
1 (6-by-1-inch) strip of kombu
2 bay leaves
12 black peppercorns
4 whole allspice or juniper berries

Directions: In a 12-quart or larger stockpot, combine all the ingredients. Fill the pot to 2 inches below the rim with water, cover and bring to boil.

Remove the lid, decrease the heat to low, and simmer a minimum of 2 hours. As the stock simmers some of the water will evaporate; add more if the vegetables begin to peek out. Simmer until the full richness of the vegetables can be tasted.

Strain the stock using a large coarse-mesh strainer (remember to use a heat-resistant container underneath). Bring to room temperature before refrigerating or freezing.

Arts in medicine

2010-05-23T15:06:00.000-07:00

By Suzie Siegel

She was an angel with an autoharp. Like many people, I had struggled with sleep in the hospital. She offered to play, and I told her I didn't know if I could stay awake. She laughed and explained she was there to help, not perform a concert. After a few minutes, I snored along with her, in a duet.

During my week at the Moffitt Cancer Center in Tampa, the Arts in Medicine staff worked wonders. One man, a friend, maneuvered his double bass into the crowded room. I cried when he played "Evening of Roses," just as another sarcoma patient did several years ago. We think of it as her song. I hadn't cried in a long while, and I made him hold me as I sobbed. That was healing, too.

Drugs and discomfort splintered my sleep until I fell into a dream of love and comfort. I didn't want to forget those feelings. If I could draw the dream, I thought, maybe it could lead me back to the dream world.

An artist came to my room with paper, pencils, pens and paint. I'm no artist, but I convinced myself that I could draw something meaningful to me, even if it had no other merit. I became a child again, delighting in the colors, coloring, coloring, coloring in the midst of the medical world. I drew my dream.

The Arts in Medicine program also includes poetry, journaling, dance and other movement. I'm glad to see bastions of conventional medicine offering other ways of healing, and I hope patients seek them out. Don't wait for your doctor to recommend them because he may know little about them. Ask your hospital staff if they have anything similar. If so, make plans ahead of time. If your hospital has no formal program, invent your own. Bring your own music, notebooks and art materials. As Dr. Jimmie Holland says:

Not all medicine comes in a bottle.

Kate McGarrigle & clear cell sarcoma

2010-01-26T18:46:00.000-08:00

Tomorrow, in New York City, an informal gathering will celebrate Kate McGarrigle, who died last week. At the same link, an obituary describes her: "Outrageous at times, but anything was more fun when Kate was along." The New York Times also recalled her life.

I was at a board retreat for the Sarcoma Alliance last week when she died, after struggling for 3½ years with clear-cell sarcoma. Here is a definition from SARC:

Clear cell sarcoma (melanoma of soft parts) is an unusual hybrid tumor that appears to be biologically related to alveolar soft part sarcoma. It is one of the rare tumors with features of both sarcoma and melanoma, including the ability to travel to lymph nodes (typical of melanoma) and to lung (more common for sarcomas). Surgery and radiation of the primary tumor site provide the best chance for cure.

-- Suzie

What does hope mean to you?

2009-11-21T12:41:00.000-08:00

This summer, I talked to a woman who lost her beloved partner to sarcoma. Both had participated in the Ocean of Hope fundraising campaign. She talked about how hope has different meanings for different people at different times.

A newly diagnosed patient may hope that the sarcoma never comes back while someone living with metastatic disease may hope for a cure. A dying patient may have hope of a painless death or hope to live just a little bit longer. Even after a patient dies, family and friends may still harbor hope that life will be better for those who get sarcoma in the future.

Rosalie, a longtime survivor, recalls hoping to find the strength to keep learning what she needed to do to survive.

Erica Gero, a leiomyosarcoma (LMS) veteran, wrote about the multitude of hopes she has living with the disease.

I hope dinner tonight will be delicious.
I hope my husband's broken rib feels better soon.
I hope my friend's broken heart heals quickly.
I hope I never get LMS again.
I hope the rain ends by noon.
I hope I can lose 5 pounds by the end of October.
I hope my LMS never returns.

For me, hope is part of my whole life.

I've included a card depicting a tree, called "The Hope Within," painted by Tamara Maas, a sarcoma survivor who donates a portion of the sale of her prints to the Hope Lodge in Cleveland.

-- Suzie Siegel

Gene Mutation Linked to Aggressive Childhood Cancer

2009-10-21T11:29:00.001-07:00

This article appeared in the NCI Bulletin on October 20, 2009

Rhabdomyosarcoma (RMS), an aggressive childhood cancer caused by mutations in genes that control the development of skeletal muscle tissue, has often spread (metastasized) by the time it is diagnosed in children, leading to poor survival rates. Researchers have now identified mutations in the fibroblast growth factor receptor 4 (FGFR4) gene that are associated with metastasis and poor outcomes in patients with RMS.

The FGFR4 protein belongs to a family of proteins known as receptor tyrosine kinases, which are involved in cellular signaling processes that help regulate cell growth, maturation, and survival. The gene, the researchers believe, may provide a target for therapy. The results appeared online October 5 in the Journal of Clinical Investigation.

Researchers from NCI; the National Heart, Lung, and Blood Institute; The Children’s Hospital at Westmead, Australia; and the Nationwide Children’s Hospital in Columbus, OH, were involved in the project. Their previous research, and that of others, has shown that FGFR4 is highly expressed in RMS. Because the gene is active during muscle development and not in mature muscle, the team investigated whether expression of FGFR4 might contribute to RMS. Using mouse models, the researchers showed that the growth and spread of human RMS cells to the lungs was inhibited by suppressing FGFR4 expression. After sequencing the FGFR4 gene in human RMS tumor samples, they found that more than 7 percent of the tumors had mutations in the tyrosine kinase portion of the protein. Some of these mutations caused the protein to become overly active. Mutations that increase receptor tyrosine kinase activity have been found in other cancers, but the researchers note that this is the first time that mutations in a receptor tyrosine kinase have been found in RMS.

With a series of lab and animal studies, they confirmed that two of the FGFR4 mutations caused increased tumor growth, reduced RMS cell death, and enhanced the ability of RMS cells to metastasize.

The mutations, which were found in both types of RMS, alveolar and embryonal, appeared to act via the STAT3 pathway. Mouse RMS cells harboring these mutations were also more sensitive to treatment with drugs that inhibit FGFR4, which has “direct implications for personalized therapy and for patients with metastatic RMS, for whom long-term prognosis remains poor,” said lead author Dr. Javed Khan of NCI’s Pediatric Oncology Branch.

A beautiful board

2009-10-20T18:29:00.000-07:00

Thanks to Joe Bark, who donated this 12-foot paddleboard, won in our raffle by David Greenberg, a chiropractor

from Newport Beach and a good friend of Mark Schulein, former captain of Ocean of Hope.

"He was very excited to win the board," said Aimee Spector, one of this year's captains. "He had bought tickets for the raffle in the winter, and then this summer's raffle, and he says he'll keep buying more raffle tickets in any future raffle because he wants to support Ocean of Hope and, well, he has good luck!"

-- Suzie

Lucky 13

2009-10-19T18:16:00.000-07:00

Go to the Web site for the South Bay Daily Breeze to see our yellow "Ocean of Hope" banner in photo No. 13, from the 2009 U.S. Paddleboard Championships. This was back in July -- I'm always late! -- but Dave Murphy says he was excited to be at Manhattan Beach, Calif., when fellow board member Jeff Bradbury came ashore. Events like this are a great place to educate people about sarcoma.

-- Suzie

Lanakila women heading to Hawaii

2009-09-17T17:02:00.000-07:00

Women from the Lanakila Outrigger Canoe Club will carry the Ocean of Hope (O2H) banners to Hawaii, where they will compete Sept. 27 in the Molokai to Oahu Race. The 23 women will start in Hale O Lono Harbor, and the finish will be around 1:30 p.m. at the Hilton Hawaiian Village.

Read about them in the Honolulu Advertiser. The story includes a quote from Brenda Maroney of Corona, Calif., who was diagnosed with synovial sarcoma in 2005. She attends a sarcoma support group in Redondo Beach, where the Lanakila team is based.

"O2H and the Sarcoma Alliance have made my journey real. They have given me hope," Brenda says. "I have felt like I was alone -- the token one-legged woman with knee cancer. I have been able to help manage my care with the information that SA brings, and the collection of experiences from survivors, caretakers and friends."

I'm thankful to Brenda for helping us, and I wrote this "thank you" to the Lanakila team. They have raised $14,000 for the Alliance so far!

I just found team captain Aimee Spector's story about raffling off a paddleboard. The raffle will end Saturday, Sept. 19.
-- Suzie Siegel

Gynecologic Cancer Awareness Month

2009-09-11T08:25:00.000-07:00

Why would we bring attention to this month on a sarcoma blog? Because we also want to raise awareness about women with pelvic sarcomas, many of whom get their first diagnosis and surgery from a gyn oncologist.

I took this photo of N.E.D., a band comprised of gyn oncologists at the Society of Gyn Oncologists meeting in February. They rocked the San Antonio convention center.

Seeing them play reminded me that doctors are people. I shouldn't need reminding. After all, I have friends who are doctors. In treatment, however, it's easy to treat MDs like Minor Deities, forgetting that they are only humans, and they have human emotions.

N.E.D. stands for "no evidence of disease," a state that many of us treasure. The band's first CD, "Rhythm Heals," went on sale Tuesday. In the clip below, Dr. Joanie Hope sings lead vocals on the title song. This is what their record company says:

The mission of the band is to enhance knowledge about gynecologic cancers and bring hope through rhythm for women undergoing treatment. The doctors strongly believe music heals. In fact, more than 250 journal articles report findings investigating the beneficial effects of music on pain, anxiety or depression. In a recent study at Memorial Sloan-Kettering Cancer Center, investigators found that patients who received music therapy while undergoing chemotherapy reported 37% less mood disturbance than other patients and 28% less anxiety. Other studies have shown that music can assist patients in coping with difficult illnesses. N.E.D. is focused on using music to convey this comfort.

My only suggestion would be that the band mention sarcoma on its page that details gyn cancers. Some of us are patients, too.

More paddling for sarcoma Saturday

2009-09-10T09:33:00.001-07:00

A women's team from the Lanakila Outrigger Canoe Club will compete Saturday in the U.S. Outrigger Championships to raise money for the Sarcoma Alliance.

The 23 women will race 27 miles from Newport Harbor to Avalon on Catalina Island in Los Angeles County, as part of Ocean of Hope (O2H), the alliance's biggest fundraising campaign.

Spector got involved with O2H four years ago. She recruited eight other women from the Lanakila club, which is based at Redondo Beach's King Harbor, also in LA County. That first year, they raised about $3,000. This year, they have raised more than $12,000 so far, not counting the money ($4,500 so far) being raised in a raffle for two paddleboards. (One board already has been awarded, but people can still enter to win the second.)

The women also raise awareness about sarcoma: They wear jerseys with the O2H logo, their escort boats carry O2H banners, and they register as Lanakila/Ocean of Hope.

The top photo shows the team at the Iron Paddling Championships in San Diego in June, where they took first place open and first overall. Team captain Aimee Spector is in the back steering. She is third from the left in the other photo, which shows the "team in the Cook Islands where we brought our O2H banner and spread the word throughout the South Pacific!" Aimee says. "We ended up medaling in two of our races also!"

When I first heard about the Ocean of Hope, I didn't really understand. I felt like Emily Litella: "What's all this about paddleboat races???" After I figured out what a paddleboard was, I still didn't get that O2H was a team, among various others, that competed in the Catalina Classic. I then didn't know what women in canoes were doing. Now I understand that O2H is a fundraising effort involving ocean sports, with team members participating in different competitions in different places.

"Just to clear it up," Aimee says, "the Catalina Classic is a paddleboarding race where individuals [paddle] 32 miles from the Isthmus on Catalina Island to Manhattan Beach Pier. Ocean of Hope started there and that has always been the flagship race/fundraising effort."

The outrigger race Saturday does not get the same fanfare because awards are given out on Catalina Island, with a much smaller audience, she notes.

"Just by getting involved we have touched the lives of people we may never meet," Aimee says. "I see O2H as an opportunity to open the paddlers' minds to giving back while doing something they love. Like being involved in any nonprofit, it takes dedication and commitment, which this team of paddlers already possesses. And the sport of outrigger paddling takes determination and perseverance, and that is what sarcoma survivors use every day to get through their journey."

I agree. Sometimes I feel like I was dropped in the ocean, fearing I would never make it to shore. The Sarcoma Alliance is my escort boat.

If you want to support the team -- and sarcoma patients -- click here. I just did, to thank the athletes for putting up with all my questions.
-- Suzie Siegel

Photos from O2H

2009-09-03T07:40:00.001-07:00

These photos are from Barney Tong. You can see more on Picasa.

Remembrance & inspiration

2009-09-01T06:12:00.000-07:00

Nine years ago, I stood at the water’s edge in Manhattan Beach, waiting for a friend on a paddleboard who was competing to support people with sarcoma. He was racing across 32 miles in the Pacific Ocean for a small campaign called the Ocean of Hope for a small organization called the Sarcoma Alliance. He was paddling 32 miles from Catalina Island to Manhattan Beach, using only the strength of his arms and the will in his heart to make it to the finish line.

Sunday, I looked across the blue ocean under a very hot California sun, and I thought about that first race and those I know and love who are survivors of sarcoma. And I thought about those I have loved and lost to sarcoma. All of those people have been a source of inspiration and wonder to me.

I thought about all the people I know, myself included, who may not suffer from the disease directly but have been touched by it in some profound way. I have witnessed incredible strength and endurance under seemingly impossible circumstances. I reflected on what this race on this day and this organization and this disease has meant to me.

My friend Suzanne was the founder of the Sarcoma Alliance. Suzanne was diagnosed with synovial sarcoma at the age of 25. Her friend Wendy was dying of liposarcoma after a 15-year battle. Wendy asked Suzanne to carry on her work of supporting people with sarcoma after she was gone. The Sarcoma Alliance was born in 1999 in Wendy’s honor. I was asked to help make this dream a reality and have done what I could to help my friend and others with sarcoma.

My little friend wanted a place where people affected by sarcoma could find guidance, education and support. The mantra was: “You are not alone.” I have memories of her sitting at her small desk, answering emails, phone calls, and writing personal notes. She would do anything and everything to try and help others. I remember the many invitations to eat, drink, be merry and fold letters for the Ocean of Hope campaign. Eat, drink and be merry to stuff and stamp envelopes. Even as she faced recurrence, metastasis and the various treatments that followed, she maintained her focus and resolve that the Sarcoma Alliance needed to help as many people as possible.

When Suzanne decided to stop all treatment in 2002 and live the rest of her days as fully as she could, she continued to focus on the Sarcoma Alliance. She wanted the organization to survive even if she did not. How brave and wonderful she was. And selfless to the end. How proud she would be today to see how her little basement organization has survived and grown and continued to help others. She insisted that Ocean of Hope continue to exist and that it should be a time of celebration in spite of the sadness and heartache that sarcoma can bring.

I continue to support the Sarcoma Alliance and the Ocean of Hope to celebrate the lives of those lost to sarcoma. I celebrate the strength of those who live and survive and move forward in spite of the disease. How brave and wonderful all of you are.
-- board member Marites Tullius

ETA: Please read the comments for more thoughts. Also, we added a photo of Suzanne and Marites.

Raffle for a brand-new paddleboard

2009-08-29T12:10:00.000-07:00

There's one day left for the first paddle, but you've got till Sept. 19 to win the second one.

These beautiful boards come courtesy of the Ocean of Hope, with support from paddleboard/

surf/SUP shaper Joe Bark. The photo shows the board we raffled off this winter. The new one will be at the beach tomorrow, and the next is on its way. All proceeds go to the Sarcoma Alliance.

The Ocean of Hope is our team in the Catalina Classic. A board will be raffled off tomorrow at the Classic after-party on Manhattan Beach. The next will be raffled off Saturday, Sept. 19, on Hermosa Beach after the Paddleboard and Lifeguard EXPO. Winners do NOT need to be present to win.

You can get one ticket for $3, 2 for $5, 4 for $10, etc. Send checks to the Sarcoma Alliance, 1714 Havemeyer Lane, Redondo Beach, CA 90278. Please include your mailing address so we can get your raffle stubs back to you. We'll announce the winners.

Don't miss this awesome opportunity! You cannot find a better deal anywhere.

Ocean of Hope Aug. 30

2009-08-13T18:42:00.000-07:00

All of us at the Sarcoma Alliance urge you to donate or volunteer at the Manhattan Beach pier Aug. 30, if you can. Above is a great photo from last year's O2H.

There are two team captains this year: Fred Sardisco represents the paddleboarders, and Aimee Spector represents the outrigger team.
There are about 20 paddleboarders, both men and women, and 29
women on our outrigger canoe team. Since O2H started, it has raised $437,509 to help sarcoma patients.

-- Suzie

ACS recognizes us

2009-08-13T18:32:00.000-07:00

I'm thrilled to report that the American Cancer Society has added us to its calendar. It now recognizes July as Sarcoma Awareness Month. And it actually did it in July, but I've been sick, and am just now getting around to announcing it.

Here's just one reason this matters: This week, I was talking to someone at a cancer center who does PR, and I told her how sarcoma nonprofits have agreed on July. She asked if the month had been recognized officially. I had to tell her that I've yet to find a legislator willing to do this. When I said the ACS had recognized us, however, that was good enough for her.

-- Suzie Siegel

Resale therapy

2009-07-29T18:20:00.000-07:00

As a volunteer in the cancer world, I’ve noticed that a lot of newly diagnosed patients feel the urge to give away stuff while others buy everything they ever wanted.

People who give away stuff may see less value in material things as they value other aspects of their life more. Or, they may think the cancer will kill them, and they’d prefer to distribute their stuff to particular people while they still can. This may have to do with the desire to be remembered.

Those who indulge in “retail therapy” may feel like they have sacrificed enough. Or, they may want to enjoy what little time they have left. Shopping can be like hoarding for a rainy day.

I did the former when I was diagnosed. One motivation was: I had settled the estates of my grandparents and parents, and I wanted to lessen the burden on my executor. One friend was so creeped out that I told her she could return my carnelian necklace if I survived five years. (I’ve survived seven, and I got the necklace back. I forgot how pretty it was.)

In addition to giving away things, I didn’t buy new things. Why get new shoes if I’m going to be in a wheelchair? My mattress was almost 20 years old, but why get a new one if I’m just going to ruin it?

A couple of years ago, I got tired of living like a refugee, on the border between life and death. The shopping spree began. Because I can’t afford retail, I love Shopgoodwill.com and a weekly flea market at a retirement center near my home. The flea market is open only to residents and their guests, and it's staffed by residents, mostly women in their 70s, 80s and 90s, like the witty Hungarian woman who loves cats and the woman who served as a WAVE in World War II. I enjoy them as much as I enjoy getting a Coach purse for $3.

Sometimes I “rescue” things – like the Finn Comfort sandals for $5 that were too small for me -- in hopes of finding them a home. For a friend’s wedding, I got some ridiculously overpriced bowl on her gift registry. As a personal gift, however, I gave her a Wedgwood bowl I bought for 50 cents because we had talked about how Wedgwood helped fund abolition activities.

Although I watched Absolutely Fabulous, I still didn’t know much about labels until I became a resale queen. I’m intrigued by the markup – how something can cost more than $100 at the mall, but I can get it NWT (that would be “new with tags” for you amateurs) for a few dollars.

As medical science takes me, organ by organ, new clothes help my body image. The ideal would be to love my body the way it is. In the meantime, some fantastic outfits have helped.

I know this sounds overblown, but this buying feels like a celebration of life. I’m enjoying the bounty of beautiful things and thinking I might live a while. Even if I don’t, I’ll go out in style.
-- Suzie Siegel

This is Sarcoma Awareness Month

2009-07-14T07:49:00.000-07:00

Sarcoma nonprofits and oncologists have agreed on July. But you might not know that because we don't have Congressional recognition, unlike other cancers, such as colon, ovarian, kidney, prostate -- well, pretty much everyone but sarcoma. Without official recognition, it's harder to get on calendars and such.

I've contacted the American Cancer Society, in hopes it will put us on its calendar and find a friendly legislator. Someday, I hope the people who represent us will grant us this small favor.

-- Suzie Siegel

GlaxoSmithKline Recruiting for Clinical Trial

2009-07-08T14:57:00.000-07:00

GlaxoSmithKline is actively recruiting participants for an international Phase III, double-blind trial of pazopanib in patients with soft tissue sarcoma. Pazopanib is an oral angiogenesis inhibitor targeting VEGFR, PDGFR and cKit. Eligible subjects may have received a maximum of 4 prior lines of systemic therapies (including up to 2 combination regimens) for advanced disease, including an anthracycline-based regimen; (neo)adjuvant/maintenance treatments are not counted against this criterion. Other primary inclusion criteria include confirmed disease progression, metastatic and not only locally advanced disease and measurable disease according to RECIST criteria. No liposarcomas (all subtypes), Ewing tumors or GIST tumors are eligible. See Clintrials.gov Identifier NCT00753688 for complete eligibility criteria and participating centres

Gem, tax, dox and trabectedin for LMS

2009-06-20T12:35:00.001-07:00

I know I'm leiomyosarcoma-centric! Eventually, I hope other volunteers will report developments in treating their subtypes. In the meantime, I want to discuss some LMS news that illustrates how confusing research can be for a patient trying to decide which chemo to do.

At ASCO, a poster from the French Sarcoma Group suggested that gemcitabine (Gemzar) + docetaxel (Taxotere) is not more effective than gemcitabine alone. One reason this matters is gemcitabine is less toxic than the g+d combo.

The study divided patients into those with uterine LMS and LMS that arose elsewhere. ULMS patients had better responses in general to the chemo, a pattern seen in other studies.

In contrast, a multi-center SARC trial in 2007 found g+d more effective than g alone in metastatic soft-tissue sarcoma, including LMS.

At a discussion session, Dr. Chris Ryan of Oregon Health & Science University in Portland, OR, noted that the French study had a relatively small number of patients. He said he wished there would be random trials comparing g+d to anthracyclines as a first-line treatment. Doxorubicin (Adriamycin) is an anthracycline that is often used as the first line of defense for LMS and some other sarcomas.

Another poster, from the UK, found g+d effective as a first-line treatment for metastatic LMS. But it didn’t compare g+d to g alone or doxorubicin.

Dr. Martee Hensley of Memorial Sloan-Kettering Cancer Center in New York reported on a SARC Phase 2 trial of adjuvant chemo for high-risk ULMS. Patients get four cycles of g+d, followed by four cycles of doxorubicin. The trial isn’t finished, but judging by the early data, she said, she expects patients to do better with adjuvant chemo. (See what I wrote about adjuvant chemo for soft-tissue sarcoma in general.)

To gain a better understanding, she said, doctors could do a trial in which some women got adjuvant chemo and others did not. The ones who didn't get chemo couldn’t get a placebo because they would know from the lack of side effects. Another option would be to compare adjuvant chemo with an aromatase inhibitor, she said, or to compare one chemo against another.

Dr. Hensley discussed problems with both the AJCC and FIGO staging systems for ULMS. She wants a nomogram that combines stage-specific variables with other factors. A good staging system matters because if you enroll patients who were going to do well anyway, it influences the results of a clinical trial, she said. From an MSKCC study:

Estimates of stage-specific PFS [progression-free survival] and OS [overall survival] for uterine LMS were altered substantially when using the AJCC versus FIGO staging system. Adjuvant treatment strategies should be tested in patients at substantial risk for disease progression and death. Neither the FIGO nor AJCC staging system is ideal for identifying such patients, suggesting a need for a uterine LMS-specific staging system to better target patients for trials of adjuvant therapies.

In other ASCO news, at least three studies noted again that trabectedin (also known as yondelis) has value in treating patients with liposarcoma and leiomyosarcoma. (Click here, here and here.)
-- Suzie Siegel

Putting the "sun" in the sunflower

2009-06-19T15:37:00.000-07:00

We swelter in the sun at fundraisers, hoping to spread the word about services for people affected by sarcoma. This photo shows Judy Lehman, a retired school nurse practitioner, who helped me staff a table at Miles for Moffitt in Tampa last month.

More than 3,000 people participated in the race to raise money for research at the Moffitt Cancer Center, including a team called the Sarcoma Speed Demons.

Although the Sarcoma Alliance needs to raise money for itself, and we have our own fundraisers, we welcome the chance to participate in any event where we can give people information.

At Miles for Moffitt, I was grateful to the University of South Florida students who provided antiseptic gel, gloves and water so that I could catheterize in a portable toilet. (I had left my house without the proper supplies.) As more people with cancer survive, we will need to keep in mind their health needs as we plan events.

An example of that is Moffitt's fundraiser for sarcoma research July 18. We had planned on a morning at the beach, but the weather has been so scorching that the staff decided instead on bowling in air-conditioned comfort. Come join us! -- Suzie Siegel

With help from our friends

2009-06-18T15:54:00.000-07:00

Last year, my friend Susan Snyder and her life partner, Doug Murray, cycled through the Columbia River Gorge as part of Jackson's Ride the Gorge, a fundraiser for the Northwest Sarcoma Foundation. At the start of the ride, they wore T-shirts with my photo and "Cruisin' for Suzie" written under it. On the back was a kid on a tricycle, looking over his shoulder and sticking out his tongue. He says, "Take THAT sarcoma!"

It is great to have friends. It is even better to have friends with a sense of humor.

This year, the event will be July 18. Melissa Hill, the foundation's executive director, has been very supportive of the alliance. Also, please check out Susan's blog, Nature's Call.

-- Suzie Siegel

Adjuvant chemo

2009-06-14T14:40:00.000-07:00

Medical oncologists in sarcoma still disagree over the value of adjuvant chemo for many subtypes, and that was apparent in a discussion at ASCO last month. The ASCO Daily News reported on it, but I'll add in some of my own notes.

Dr. George Demetri of the Dana-Farber Cancer Institute in Boston talked specifically about GIST, and if you're interested, I encourage you to click on the Daily News link above. The other two doctors in the session talked about chemo in general for other subtypes.

Session Chair Ian Robert Judson, MD, of the Royal Marsden Hospital, United Kingdom, noted that questions arise about the appropriateness of adjuvant therapies because of several factors. Soft tissue sarcomas are rare diseases, he explained, and there are conflicting data on the efficacy of chemotherapy as well as variations in clinical practice regarding the standard treatment for these diseases. ...

“We know that there are variations in response to these treatments among individuals, and unless we learn more about how to identify who is likely to benefit, we run the risk of administering a lot of unnecessary treatments with accompanying toxicity,” said Dr. Judson in an interview with ASCO Daily News.

He noted that the physician must take into account the individual patient’s level of risk tolerance, along with the best available evidence regarding the likelihood of benefit when deciding whether to initiate adjuvant therapy for these malignancies.

Robert S. Benjamin, MD, of M. D. Anderson Cancer Center, reviewed recent literature regarding adjuvant chemotherapy for soft tissue sarcomas. He noted that the Sarcoma Meta-analysis Collaboration in 1997 found that doxorubicin-based chemotherapy improved time to local and distant recurrence and overall recurrence-free survival; however, there was not a significant improvement in overall survival.

After the 1997 study, ifosfamide was added to doxorubicin, and that improved survival a little, he noted. Since then, other drugs have been developed or tried with sarcoma. He criticized a 2007 study by the EORTC, saying it was not representative of a global, random population.

He recommends neoadjuvant chemo, if possible, because it lets the oncologist judge whether the tumor is reacting to the chemo. In regard to adjuvant chemo, he would like to see doctors give more of it for a longer period of time.

“I don’t put much stock in the argument that chemotherapy doesn’t work,” he said. “We know that, yes, it works and no, it doesn’t work nearly well enough. So we need to give more of it, not less. Stage III sarcomas are such a bad group of tumors that, even though we know the treatment is going to be awful for the patient, not treating them is ethically unacceptable.”

Dr. Benjamin suggested that clinicians should not approach adjuvant therapy for soft tissue sarcomas using the same rules for breast cancer therapies because of broad differences between the diseases.

He noted that breast cancer is more common and more homogeneous than sarcoma and therefore results in larger studies and more numerous therapies, whereas there are limited options for sarcoma.

An abstract from the French Sarcoma Group, presented at last month's ASCO, found little benefit for grade 2 patients, but improved survival for those with grade 3.

-- Suzie Siegel

Different NCCN standards

2009-06-10T16:18:00.000-07:00

If a woman gets diagnosed with an abdominal sarcoma, her oncologist can check the National Comprehensive Cancer Network's soft-tissue sarcoma guidelines, written by some of the top doctors in sarcoma centers across the United States.

If a woman gets diagnosed with the same sarcoma subtype in her uterus, her oncologist will be steered to the uterine neoplasms guidelines, written by top gynecologic oncologists.

The guidelines for uterine sarcomas recommend a patient get a physical exam every three months for two years, plus a chest X-ray annually. "CT/MRI as clinically indicated." This replaced the previous recommendation of: "Chest/abdomen/pelvis imaging every 3-6 mo for 2 y, then annually."

Meanwhile, the soft-tissue sarcoma guidelines recommend a physical exam, plus CT scans of the abdomen/pelvis, every 3-6 months for 2-3 years for someone whose tumor started in the abdomen. "Consider chest imaging." These guidelines also have much more information on new drugs and genetics for sarcoma.

I don't understand why there are different standards, nor do I understand why chest imaging is not recommended more highly, considering that some subtypes migrate to the lungs.

In 2005, I asked Dr. Robert Benjamin about the NCCN guidelines, and he said sarcoma doctors would write the ones for uterine sarcomas in the future. That future has not yet come.

-- Suzie Siegel

SARC creating unified database

2009-06-10T09:09:00.000-07:00

SARC will build a database of tissue specimens stored at M.D. Anderson Cancer Center in Houston. The WWWW Foundation has more information:

The QuadW board and the Tichenor family have combined to provide a three-year $687,500 grant to the Sarcoma Alliance for Research through Collaboration (SARC) to create a unified clinical trial database system.

The database will consolidate findings from the clinical trials of multiple research institutions, allowing remote data entry and access for current trials. Researchers will be able to customize the user interface to suit individual trials and access data from previous trials and combine it in flexible ways with current research data.

SARC is a primary resource for sarcoma researchers and clinicians. As a collaborative effort of leading cancer centers, SARC guides the development of clinical trial protocols and provides a forum for reporting and evaluating the results of those trials.

SARC Treasurer Bob Benjamin, chair of Anderson's Sarcoma Center, discussed the database last month before the annual meeting of the American Society of Clinical Oncology (ASCO) in Orlando. Dr. Benjamin said the data should be collected this year, with tissue samples and imaging tests gathered together next year.

I'm grateful to those who made this happen. If you want more information on the need for tissue banks, I wrote this article previously. -- Suzie Siegel

Women under-represented in clinical trials

2009-06-08T00:43:00.000-07:00

This is a news release from the University of Michigan, and I'm posting it verbatim because I think it's really interesting. -- Suzie Siegel

Women are under-represented in clinical cancer research published in high-impact journals, according to a new study by researchers at the University of Michigan Comprehensive Cancer Center.

Taking into account the incidence of particular types of cancer among women, studies included a smaller proportion of women than should be expected. The analysis looked specifically at studies of cancer types that were not gender specific, including [sarcoma,] colon cancer, oral cancers, lung cancer, brain tumors and lymphomas.

The authors looked at 661 prospective clinical studies with more than 1 million total participants. Results of this study appear online in the journal Cancer and will be published in the July 15 print issue.

“In the vast majority of individual studies we analyzed, fewer women were enrolled than we would expect given the proportion of women diagnosed with the type of cancer being studied. We’re seeing it across the board in all cancer types,” says study author Reshma Jagsi, M.D., D.Phil., assistant professor of radiation oncology at the U-M Medical School.

“It’s so important that women are appropriately represented in research. We know there are biological differences between the sexes, as well as social and cultural differences. Studies need to be able to assess whether there are differences in responses to treatment, for example, between women and men,” she adds.

The National Institutes of Health’s Revitalization Act of 1993 explicitly calls out the importance of including women in clinical research, noting that clinical trials should enroll adequate numbers of women to allow for subgroup analysis.

The U-M researchers found that studies reporting government funding did include higher numbers of women participants, but the impact was modest – 41 percent, compared to 37 percent for studies not receiving government funding.

Traditionally, researchers were told not to include people of vulnerable populations in their studies. This group included women of childbearing age. “By protecting them from research, we’re excluding them,” Jagsi notes.

Previous studies have found some barriers to clinical trial participation are lack of information, fear and a perception of interfering with personal responsibilities, such as child care.

“Sometimes participating in research studies can be time intensive. Women today are often stretched very thin trying to deal with the balance between domestic responsibilities, their cancer diagnosis, and often a career as well. They may be particularly likely to find clinical trials too burdensome. In that case, researchers should consider providing compensation to help with transportation or child care expenses,” Jagsi says.

This under-representation of women is not necessarily the result of conscious decisions, points out senior author Peter Ubel, M.D., director of the Center for Behavioral and Decision Sciences in Medicine at U-M.

“Clinical researchers are not purposely trying to exclude women from their studies. All the more reason they need to consciously and earnestly revise their recruitment methods to give more women a chance to volunteer,” Ubel says.

Methodology: The researchers looked at all original clinical cancer research published in five top oncology journals and three top general medical journals in 2006. The journals included were the New England Journal of Medicine, the Journal of the American Medical Association, the Lancet, the Journal of Clinical Oncology, the Journal of the National Cancer Institute, Lancet Oncology, Clinical Cancer Research and Cancer. Articles were analyzed to determine factors including the number of participants, gender of participants, type of cancer and funding source.

The percent of women was summarized in two ways: The overall percent of women from all studies; and the average percent from each study that were women. The first method gives greater weight to larger studies, while the second method allows each study to have equal weight. Women’s representation was lower than expected, based on general population incidence data, according to both analyses.

Sarcoma & women's oncology

2009-05-23T09:55:00.000-07:00

This is a photo of Gia and Genine Apidone, wearing the puzzled expression of someone who might not actually know what sarcoma is. Genine is a counselor at Case Western Reserve University in Cleveland. She and I have master's degrees in women's studies, and we were in classes together that looked at women in the health-care system, among other things.
I was thinking of that this month when I went to a reception for the new Center for Women’s Oncology at the Moffitt Cancer Center in Tampa. The center combines the clinics for breast and gynecologic cancers.

I'd love to hear from women with sarcoma in other locations -- do you ever think: Hey, I'm a woman, too!

   At the reception, I wore a pink suit because it was pretty, forgetting my own "gang colors." Because my cancer arose in my reproductive tract, people told me that I should have worn teal, the color for ovarian cancer, which seems to have morphed into the color for all gyn cancers. (I could have worn purple for leiomyosarcoma or yellow for sarcoma.)
   There was live music, gourmet hors d’oeuvres and an open bar. One doctor joked that patients might not mind the usual wait time if the waiting room could retain the bar. Survivors were given a white rose and a tote bag.
   We won’t keep the bar, but there’s no doubt that women whose cancers arose in their reproductive tracts will get an upgrade in amenities by the merger with the breast clinic. Many women have worked hard to raise money to fight breast cancer. I have great respect for them. In a system that relies heavily on volunteers and donations, however, people with rare diseases get less.
   As an example: In the new center, plush bathrobes in a light sage, tied with a ribbon, rested on the exam tables. I asked if those were the gifts we could win in the drawing. No, I was told, patients would be wearing them. WHAT?? We don't have to wear stiff paper drapes or white-with-small-flowers-and-washed-a-zillion-times-in-hot-water gowns?
   Combining the breast and gyn clinics can increase collaboration among doctors in the clinic and the labs. I'm all for collaboration -- I wish oncologists in gyn and sarcoma would collaborate nationwide.
   There’s a genetic link between some breast and ovarian cancer. For the women with that genetic profile, it makes sense to join forces. But there are other cancers connected by genetics or treatment, e.g., retinoblastoma and soft-tissue sarcomas. I hope all oncologists and support staff understand the various connections.

-- Suzie Siegel

Spirit of Survival West 2009

2009-05-15T10:31:00.000-07:00

Please join the Sarcoma Alliance on June 28th, 2009 in celebrating the 4th annual Spirit of Survival West in San Francisco’s beautiful Golden Gate Park. This is a day dedicated to everyone affected by cancer, and specifically those with sarcoma. It's a day filled with optimism and hope. It's a day where sarcoma patients, friends, families and their caregivers meet, share stories, and bond with supporters like you. It's a day when you know that "You are Not Alone.

There will be a 5k walk and for the more ambitious either a 5k or 10k run.

Learn More

http://www.sarcomaalliance.org/events.html

Sarcoma Alliance Attends Oncology Annual Meetings

2009-05-11T09:12:00.000-07:00

In early May, I attended the annual meetings of the Oncology Nursing Society and the Association of Oncology Social Work. These meetings provide an important opportunity for the Alliance to let oncology providers learn about our programs and services. They also give us the opportunity to renew long term relationships and bring professionals up to date on our new initiatives and activities. We see all kinds of providers at these meetings. Some only have a few sarcoma patients each year and are very excited to learn that there is an organization that can support them in their care of patients and their families. Similarly, some stop by because a family member or close friend has been diagnosed with sarcoma, and they are excited to find an organization that can help them. Finally, some have very large number of sarcoma patients and ask that we send them a new supply of our brochures.

The meetings also give us an opportunity make or renew relationships with other advocacy organizations. We often decide that our respective clients would be better served by adding links on our websites to each other. For example, we have added links to First Descents ( www.firstdecents.org ) a camp for your adults with cancer and to www.imtooyoungforthis.org that empowers young adults affected by cancer.

Finally, we also meet with representatives of pharmaceutical companies to talk about clinical trials for sarcoma. I spoke with Merck who in partnership with Ariad are conducting a worldwide trial on Deforolimus. This phase 3 trial is progressing well with patients still be enrolled. More information can be found at www.succeedtrial.com . A detailed update will be available at the American Society for Clinical Oncology’s annual meeting at the end of May in Orlando, Florida. I will have an update in early June.

Arthur Beckert, Executive Director

Miles for Moffitt

2009-04-30T17:04:00.000-07:00

This run/walk May 9 raises money for research at the Moffitt Cancer Center in Tampa.

This year, I'll have a table in the health expo to tell people about services available to sarcoma patients, such as our live chats, discussion board and peer-to-peer network.

There also will be a Sarcoma Speed Daemons team again. To get you in the spirit, here are some photos from 2007 by Jim Stem. That year, we won an honorable mention for having more than 30 team members.

Above is Miles for Moffitt President Karen Dalton, who gave an award to Greg Stamatelos for being the fastest survivor. He ran 5 miles in 40 minutes, 32 seconds. Although he had brain cancer, he ran for the sarcoma team and has been a supporter. In the white T-shirt is Chad McLeod, a survivor of Ewing's, who ran 10 seconds behind Greg. Dr. Samuel Agresta, a medical oncologist in the sarcoma program, ran alongside Chad, his patient. Both are triathletes. Dr. Agresta now works in San Francisco.

Cindy Harris covered the spokes of her wheelchair in green and yellow to match her Sarcoma Alliance T-shirt. Her husband, Rob, and son, Kevin, brought refreshments for the team. Dr. Julia Cogburn, below, then a medical-oncology fellow, modified her Sarcoma Alliance T-shirt to make it cooler under the hot Florida sun. She came in second in the 5K race among women aged 30-34, with a time of 26 minutes, 22 seconds.

Another team member to place was Jay Ronca, below, who finished 11th among men aged 30-34, running 5

miles in 43:29. I'm sure a lot of people got educated that day on what a sarcoma is. Wish us luck this year!

Suzie Siegel

We go worldwide

2009-04-19T15:09:00.000-07:00

When we have more money and help, we plan to translate our pages into other languages. In the meantime, we hear from people around the world who can speak, read and/or write in English. Executive Director Arthur Beckert estimates we reach people in more than 30 countries each year. Our Peer to Peer Program includes people from 16 countries outside the United States. Our friends and supporters are just as far-flung. As an example, here is journalist Wilma Yamzon of Manila in the Philippines.
-- Suzie Siegel

Don't forget your teeth

2009-04-19T14:17:00.000-07:00

I have bladder damage from surgery and radiation. Among other things, I was prescribed Ditropan, which makes my mouth as dry as the Dust Bowl. I've been eating candy and chewing gum. Some nights my mouth is so dry that I fear the parts will stick together. Sometimes I go back to sleep with a cough drop in my mouth. It would be sad if I survived metastatic sarcoma only to choke to death on a cough drop.

I finally called my dentist's office, and the staff recommended various products (mostly by Biotene) that would relieve my dry mouth, especially at night, without causing cavities or other damage. Apparently, a lot of older denture-wearers know about these products, but I didn't.

I did know that it's good to get your teeth cleaned before starting treatment, such as chemo, in case you can't during treatment, and to get your teeth checked more often.

All of this reminds me of a lesson that I need to keep learning: We have to be our own advocates. We have to be our own case managers. We need to check drug interactions and side effects. And if something is bothering us, we need to ask around for relief.

-- Suzie Siegel

Ocean of Hope Campaign begins with the Catalina Relay

2009-04-17T13:11:00.000-07:00

The 2009 Ocean of Hope campaign seems to begin earlier and earlier each year thanks to a wonderful group of paddleboarders and members of the Lanakila Outrigger Team. This year Aimee Spector is leading the charge with races dedicated to the Sarcoma Alliance and a fantastic raffle featuring a stand up paddle board from Joe Bark. The raffle was a tremendous success raising over $4,000. Alicia Gaut was the very happy and excited winner. Thank you, Aimee for the great beginning to 2009.

Following is report of Aimee’s latest adventures on the sea……

“I raced with my Lanakila teammate Shien Lu who is really awesome at pulling out the stops on race day. We both had an excellent race and were fired up the whole way. Jane Cairns, paddleboarder extraordinaire and Ocean of Hope team member, was our escort boat driver, so, come on, how could we go wrong?

We left Catalina on Sunday to begin the race with grey overcast skies, a side wind and not much bump. In short, conditions pretty much stunk.

There were about 50 teams racing, a total of 110 paddlers, with three teams in our division. That doesn't sound like much I know, but this is 40 miles of grueling racing, so it comes down to the elite (or crazy, or both). My partner and I battled it out with another team the whole way across, pretty much trading places until around mile 25. Then our rival team got a 3-minute lead, and we thought maybe all was lost. But Shien Lu and I are pretty phenomenal racers, so we decided we should just close that gap, and in less than 5 miles, we had. Then it was a dog fight to the finish. I would like to say we won, because that is an awesome ending, but we didn't. We finished a boat length behind, about 20 seconds. But honestly, it was one of the best races I have ever had. I couldn't' have asked for a better partner, escort boat driver, or finish (well, unless we had won).

I had Tina Owens' name on my canoe across the channel (she died of sarcoma last year a few months after the Catalina Classic where Matt Belanger had her name on his paddleboard), and her husband Bill and daughter Sarah were at the finish to greet me. Slade and Kelly were also on the beach in full 02H regalia; I was proud to be racing as member of Ocean of Hope. I think it gave me that extra push when conditions were terrible, or when a change went wrong, or when Jane told me we weren't even 1/2 way there yet.

On a side note, the third place team came in about 45 minutes behind us. So a boat length isn't too bad at all!”

Talk to you soon,

Aimee

ProSolutions Software Partners with the Sarcoma Alliance

2009-04-03T12:47:00.000-07:00

The Sarcoma Alliance is proud to report that ProSolutions Software has designated the Sarcoma Alliance as its charity of choice. ProSolutions is the leading software provider for the management of spas and salons and be donating up to 15% of the cost of software purchases to the Alliance. On behalf of everyone we help, the Sarcoma Alliance thanks ProSolutions for this wonderful partnership.

Letter to the National Cancer Institute

2009-03-27T09:43:00.000-07:00

This month, 20 sarcoma advocacy organizations sent a letter to Dr. John Niederhuber, director of the National Cancer Institute, petitioning the NCI to prioritize funding for sarcoma research. The letter referred to President Obama’s renewed call for finding a cure for cancer, and the Obama/Biden initiative to include a focus on rare cancers.

In the past, sarcoma research has not been a priority of government funding. For example, the sarcoma community worked with NCI to develop the Sarcoma Progress Review Group. This group published a report in 2004, but the recommendations have not been adequately implemented.

As another example, cooperative groups are funded mostly by NCI, and when funding was reduced for these groups in the past few years, they eliminated clinical trials for rarer cancers including sarcomas. Right now (based on a search on www.cancer.gov) major adult cancer cooperative groups such as SWOG, ECOG and CALGB have no frontline treatment clinical trials open for sarcomas.

The letter asked for the following research aims to be implemented:
• That sarcoma be added to those cancer types evaluated as a part of the NCI Cancer Genome Atlas Project.
• That new ARRA grant applications and other future grants pertaining to sarcoma are given preference.
• That sarcoma-related research grants currently approved but not fully funded by NCI be funded up to levels requested in the original applications.
• That new funding for expanding research training opportunities include a focus on sarcoma.
• That new investigator funding include a focus on sarcoma.

The letter petition was spearheaded by the Sarcoma Foundation of America, and was signed by these organizations:
• BeatSarcoma
• Connective Tissue Cancer Network
• Desmoid Tumor Research Foundation
• Foster Foundation
• GIST Cancer Research Fund
• GIST Support International
• Hope Fund for Sarcoma Research
• Kristen Ann Carr Fund
• Polish Sarcoma Patient Advocacy
• National Leiomyosarcoma Foundation
• Northwest Sarcoma Foundation
• Sarcoma Alliance
• Sarcoma Alliance for Research Consortium
• Sarcoma Foundation of America
• The Alliance Against ASP Sarcoma
• The Liddy Shriver Sarcoma Initiative
• The Life Raft Group
• The sPECial Fund
• The Swing Away Foundation
• WWWW Foundation, Inc. (QuadW)

The American Recovery and Reinvestment Act (ARRA) greatly increases funding for NCI, which in turn provides the opportunity to greatly increase funding for sarcoma research. The sarcoma community spoke with one voice in requesting that NCI consider sarcoma to be a priority. It will be up to us all to continue advocating for this goal.

Joan Darling, Ph.D.
Sarcoma Alliance Board President

IDM Receives Approval in Europe for Osteosarcoma Drug

2009-03-25T13:52:00.000-07:00

Recently IDM Pharma, announced that mifamurtide (known as MEPACT® in Europe), a new class of therapy for the treatment for metastatic, non-resectable osteosarcoma received Centralized marketing authorization from the European Commission. This means that mifamurtide - the first new treatment for osteosarcoma in more than 20 years - can now be marketed in the 27 Member States of the EU, as well as in Iceland, Liechtenstein and Norway.

IDM continues to work on bringing this important treatment to the United States. They have Compassionate Use trials taking place at MD Anderson Cancer Center in Houston and Memorial Sloan-Kettering Cancer Center in New York. They continue to work with the Children’s Oncology Group, as well as external experts and advisors to gather patient follow up data from the Phase 3 clinical trial of mifamurtide and to respond to other questions in the non-approvable letter the Company received from the U.S. Food and Drug Administration (FDA). Given the outcome in Europe, they expect to submit an amended New Drug Application (NDA) in the first half of 2009.

Results from the largest Phase 3 trial completed in osteosarcoma, enrolling approximately 800 patients, demonstrated that the addition of mifamurtide to chemotherapy resulted in approximately a 30 percent reduction in the risk of death. In addition, overall survival after six years of follow-up in patients treated with chemotherapy and mifamurtide was 78 percent, compared to 70 percent in patients treated with chemotherapy alone.

Celebrating Our 10th Anniversary

2009-03-13T11:48:00.000-07:00

Since 1999 the Sarcoma Alliance has been helping everyone affected by sarcoma. In 2009 we proudly celebrate our 10th Anniversary of providing guidance, education and support to the newly diagnosed, long term survivors, family members, caregivers and friends. The focus on this mission has not wavered during these years and will continue so that early diagnosis is the norm, and everyone receives care in the most appropriate setting to assure the best possible outcome. We will continue to help and connect the sarcoma community for support and education. Finally, we and all the other individuals and sarcoma organizations will never rest until there is a cure for all. Please visit our website to see what we are doing and celebrate with us by purchasing our special edition 10th anniversary t-shirt.

Thank you to everyone for your support and endless efforts on behalf of the sarcoma community. Please let us know how we can do more.

Arthur Beckert,
Executive Director

We got the 'hell' out!

2009-03-10T16:21:00.000-07:00

Some of you love our green T-shirts that ask: “What the hell is a sarcoma?” on the front, with the answer on the back. But others didn’t like the use of “hell.”

   We’ve now designed a white shirt, with yellow and green lettering, that simply has our 10-year anniversary logo on the front. The back reads: “Sarcoma is a rare and aggressive cancer that strikes over ten thousand Americans every year. Early diagnosis and proper treatment are crucial to survival. The Sarcoma Alliance provides immediate education, guidance and support at www.sarcomaalliance.org for those in need.”
   We’ve also added a small size. (Our green ones are in M-XL.)
   If you want to order a T-shirt, click here. Your donation goes to help fund our programs. But our T-shirts do more than raise money; they also raise awareness. I wish I had known something about sarcoma when I was diagnosed in 2002.
   You might think that people are so familiar with the Internet these days that they find resources right away. But I remember how overwhelming it was when I was diagnosed even though I was accustomed to researching. I talk to people all the time who didn’t know that they could connect easily with others with sarcoma.
   I’ve decided to run photos of Sarcoma Alliance supporters in their T-shirts, in hopes that will encourage others to get the word out.

Modeling our new shirt is Zita Rarastesa of Solo, Indonesia, who is working on her doctorate in English in Tampa, Florida. Sporting our old shirt is Mary Hestand, who works at the University of Texas Southwestern Medical Center in Dallas. Yes, she really is buried in the sand on South Padre Island, Texas.
-- Suzie Siegel

Made Me Nuclear

2009-03-05T18:16:00.000-08:00

As a member of the Sarcoma Alliance I’m so proud that we are involved in Charlie Lustman’s “Made Me Nuclear” show http://www.mademenuclear.com/ (turn on sound). Charlie Lustman was a professional musician when he was first diagnosed with osteosarcoma in 2006 and became a patient at Cedars-Sinai (Dr. Charles Forscher) in Los Angeles. I exchanged a couple of emails with Charlie about me attending his September 2008 premiere for the Sarcoma Alliance (SA) and we went from there. At the time I didn't know much about Charlie. I arrived in Santa Monica for the opening night (Thursday) and found I wasn’t on the ‘will-call’ list, but Sandra (will-call) let me in because I had the Sarcoma Alliance brochures, then gave me a program and seated me. I looked at the program and on the cover page was “Made Me Nuclear, presented by the Sarcoma Alliance, Santa Monica Playhouse 2008”. (That’s ALL that is on the cover page) The Made Me Nuclear show is a ‘pop operetta about surviving cancer’ as is described at http://cdbaby.com/cd/charlielustman2 (where you can read his osteosarcoma survival story and listen to a portion of each of the songs on the entire 'Made Me Nuclear' CD and purchase it if you want), and the songs in the show and CD follow the chronology of Charlie’s path from diagnosis to being declared cancer free. The show includes his comments between the songs.

The show is GREAT! Made Me Nuclear is a one-man show in a Community Theater. Most of the songs are upbeat, uplifting, and inspirational (my caregiver opinion). The show starts with “The Call” (‘we found CANCER’) followed by “Made Me Nuclear” and “Dr. O” about staging scans and surgical planning. “Are you Afraid” is the obvious next step. Charlie then has surgery, wakes up and describes his outlook in “Surreal to Me”, and then going through 20 rounds of chemo in “Stickin’ around”. “Come Inside” seemed psychedelic and (perhaps) how Charlie felt under the effects of adjuvant chemotherapy. “Chemo Brain” is self explanatory. In “Somebody New” Charlie states how he is starting his 'post-treatment' life again as ‘somebody new’, but DIFFERENT. “Just When I Needed You” is about his daughter who was born in the same hospital but 3 floors above him while he was in treatment. “Do What You Love” describes Charlie’s new outlook after completing his treatment, and “A Simple Song” is thanking the doctors, nurses, friends and family for their help during his sarcoma journey.

To tell the truth, I had tears during the first song “The Call” as I re-lived difficult memories. But as the show went on I found Charlie’s message ‘uplifting’. When I first left the Playhouse and went to the reception area I noticed the organizers had a note near the SA brochures, “Please Support our Presenting Sponsor”. I waited and finally was able to meet and talk with Charlie, but he had MANY others waiting to speak with him, so I let them. Charlie let me ‘will-call’ people for the following night (Friday), so I came back with some members of the LA area sarcoma support group. The second night was almost full, and at the show’s end Charlie received a standing ovation from those in attendance.

AGAIN, I’m SO proud that the SA is involved with this. The Made Me Nuclear show and CD don’t JUST describe the journey of someone with sarcoma, but it may relate to the journey that ANYONE with cancer might experience.

I originally posted the above message in September 2008. The Made Me Nuclear show was supposed to run to the end of October 2008, but it has been extended several times and is now extended through the end of March 2009. Last Saturday was the 52nd Made Me Nuclear show. Saturday's show was sold out and Charlie received a standing ovation. Charlies wife just had their 3rd child (a boy) so there's NO SHOW March 6-7, but there's shows every Friday and Saturday through the end of March (March 14 is already sold out, and he's talking about extending the show through May 2009). Since the September premiere Charlie allows me man a table in the patio of the Playhouse representing the Sarcoma Alliance and talking with audience members as they leave the show.

Again, I'm soo proud that the Sarcoma Alliance is involved with this show, and I'm proud to be at the show representing the SA.

Dave Murphy
Sarcoma Alliance Board Member

Medicare reform

2009-02-26T10:12:00.000-08:00

Many people associate Medicare with older adults, and they may not know, or they forget, that people who receive Social Security Disability Insurance payments also qualify. About 7 million people younger than 65 qualify for Medicare because they have severe and permanent disabilities.

The government makes people wait two years after becoming eligible for SSDI before they can receive Medicare. (Here's an explanation.) Some of us joke that the feds must be hoping we'll die first and thus save them the expense. Cost was an issue when Congress decided in 1972 to create a two-year waiting period. This also was supposed to reduce abuse, according to a Newsday article. But people already go through rigorous screening to get SSDI. If they pass those hurdles, why make them wait again?

A report this month on cancer patients, by the Kaiser Family Foundation, mentions the issue with Medicare. The Medicare Rights Center has a form for writing to Congress in protest. The center notes:

According to a 2003 study by the Commonwealth Fund, as many as one-third of those in the waiting period may be uninsured or have inadequate insurance coverage. By the time they obtain Medicare coverage, 77 percent are poor or nearly poor. Close to half have incomes below the poverty line. After qualifying for Social Security Disability Income (SSDI), nearly 12 percent of individuals die while still in the Medicare waiting period.

Even when they get on Medicare, some people can't find an insurance company willing to write a Medigap policy.

P.S. SSDI and Medicare are different from SSI and Medicaid.

-- Suzie Siegel

Single with Cancer

2008-12-30T15:32:00.000-08:00

Here is a link to an article about being single and facing a cancer diagnosis. Sharon, a sarcoma survivor, was interviewed for the story.

On Their Own

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/929

BY MARC SILVER
CureToday.com Winter 2008

Patient education

2008-12-27T14:01:00.000-08:00

People with rare cancers, such as sarcoma, may have different needs when it comes to patient relations and education.

A person diagnosed with a common cancer has a much better chance of knowing someone who survived that kind of cancer. But people with sarcomas may end up comparing their cancer to someone with a different cancer, and that can lead to all sorts of misunderstandings.
For example, carcinomas usually are identified by the site where they originate, such as “breast cancer” or “thyroid cancer.” This differs from sarcoma, which often is named for the cell it most resembles. This can cause confusion, not just for the patient, but also for health-care workers who aren’t familiar with sarcoma. A woman with angiosarcoma in her breast may understand only that she has cancer in her breast, and a patient educator may give her material on “breast cancer.”

The confusion is compounded by the fact that there are at least 50 different subtypes of sarcoma, which often behave differently and are treated differently.
Let’s say Jane goes to the local hospital, where a gynecologist discovers her “fibroid” is uterine leiomyosarcoma (ULMS). She talks to a friend who had radiation and chemo for breast cancer, and Jane begins to wonder why her doctor didn’t offer those options to her.

   She decides to get a second opinion from a comprehensive cancer center. When she calls to make an appointment, she tells the scheduler that she had cancer in her uterus. She is referred to gynecologic oncology.
   Jane reads about uterine cancer (carcinoma) on the Internet, and some things don’t make sense to her. At the patient education center at the cancer center, she gets more information on uterine cancer (carcinoma). In the gyn clinic, there are no brochures on sarcoma.
   Finally, she understands that she has sarcoma. She discovers the Sarcoma Alliance, and she learns that her cancer center has a sarcoma department. Although she likes the gyn oncologist she sees, she’s outraged that she didn’t have the option of seeing someone in sarcoma. She complains to patient relations. She learns that she always had the option of seeing doctors in both gyn and sarcoma -- she just didn’t know it.
   If health-care workers are attuned to the existence of rare cancers, they can head off confusion and anger in patients.

-- Suzie Siegel, board member

Alliance Board Member Visits Russia

2008-12-23T14:56:00.000-08:00

Following is a report from Dave Murphy who visited Russia after attending the annual meeting of the Connective Tissue Oncology Society meeting in London.

While on vacation in Europe I visited Katerina Kiseleva, Executive Director of Parents and Children Against Cancer (CAPAC) http://www.capac.ru/ in St. Petersburg Russia. Katerina arranged for me to visit the pediatric cancer ward at City Hospital #31, Dept of Pediatric Oncology/Hematology. Picture is of me with Dr. Margarita Belogurova, head of the department (note Sarcoma Alliance brochures and 'Sarcoma Knows No Borders' wristbands on the desk).

We also visited the National Scientific Research Institution of Oncology. Picture is of me with Dr. Yuriy Punanov, head of their pediatric department.

I talked about the CTOS conference, and the iSPAN meeting before the conference. The obvious first question I was asked was "you only do this for people in your countries, don't you?" and my response was that the SA programs and services are for ANYONE with sarcoma in ANY country, and also that the efforts of other sarcoma organizations raising funds for research would benefit sarcoma patients worldwide.

Each of them allowed me to be escorted into the wards and meet each child in the ward. I met a few sarcoma patients, osteosarcoma, both recent amputees, and talked with some of the doctors in the ward. I gave out California calendars and Halloween candy and briefly spoke with the children and parents in each room (with Katya translating).

I asked the doctors about the types of sarcoma patients they see. They didn't really answer me, so I asked if they see patients with rhabdomyosarcoma, Ewing's sarcoma, chondrosarcoma, synovial sarcoma, peripheral nerve sheath tumors, etc.. The doctors were surprised I knew the specific sarcoma types, because they see patients with each of those types.

Children and Parents Against Cancer is an organization that helps ALL pediatric cancer patients. On each visit Katerina brought her organizations brochures and some gifts. She explained how CAPAC provides some assistance to some of the families, and arranges for excursions for some of the children out of the hospital on short trips around St. Petersburg, and trips to other countries like Ireland http://www.barretstown.org/ and the US http://www.holeinthewallgang.org/ .

When I spoke of the sarcoma chat I was introduced to the person that answers Russia's pediatric cancer hotline.Overall I was well received by everyone I met and I felt they were surprised that I was interested in visiting their facilities.

Then I started playing the tourist. The next picture is of me in the garden of Catherine the Great's Palace at Pushkin outside St. PetersburgDave Murphy

The Fearless Outrigger Team

2008-12-05T13:46:00.000-08:00

The Lanakila Outrigger Team raised over $6,000 for the Sarcoma Alliance this past summer! For a report on their adventures see our Fall 2008 newsletter.

The Assistance Fund – A Note of Thanks from Drake’s Parents

2008-11-25T14:56:00.000-08:00

by Arthur Beckert

We recently received a letter from a grant recipient from our Assistance Fund. This fund helps pay for second opinions from sarcoma specialists.

"As the parents of a teen diagnosed with sarcoma, we wanted to make the very best medical decisions for our son, but when we received conflicting opinions about his care my husband and I felt so helpless. This was our child’s life, and we didn’t know who to trust. Ultimately, we chose to seek out a synovial sarcoma specialist whose practice focused on teens and young adults. While our insurance company wouldn’t cover our visit to Dana Farber in Boston, there was no question that this was what we needed to give us peace of mind—and that’s exactly what we got. Thanks to our visit with Doctor Albritton, we felt that Drake’s prognosis was good enough to forego chemotherapy and finally move on with our lives. The trip to Boston also enabled us to visit Harvard and MIT and dream about a future where anything was possible. We are so grateful to the Sarcoma Alliance, not only for the grant that helped to cover the costs of our visit, but also for all the information and support we received on the Web site. You were definitely a source of hope during an extremely difficult time."