O2H paddlers rock June 17

The paddleboarding trifecta begins June 17 with the Rock 2 Rock race in Southern California, and our Ocean of Hope team will be there.

"Rock 2 Rock is considered a tune-up race for both Moloka'i 2 Oahu in July and the Catalina Classic in August," says O2H co-captain Aimee Spector of Redondo Beach. O2H, a series of ocean races, is the Sarcoma Alliance's biggest fundraising campaign. She ticks off the names of the team members: co-captain Fred Sardisco, Phil Ambrose, Joel Pepper, Steve Shikiya, Steve Shlens, Scott Gamble and Mike Rogers. She calls them "super nice guys."

"Our team is comprised of some of the most humble yet talented paddleboarders in the South Bay and beyond."

The 22-mile Rock 2 Rock Paddleboard + Stand Up Paddling Race begins off Catalina Island and finishes at Cabrillo Beach in San Pedro in Los Angeles County.

"You can race solo or in a team, traditional or stand-up," Aimee says. "Awesome goody bags, pre- and post-race meals, a great finish-line venue and the much-anticipated Ocean of Hope raffle of a Bark board are all good reasons to attend! $5 from every competitor’s race fee will be donated to the Alliance."

Famed paddleboard shaper Joe Bark started the race 15 years ago, and George Loren continues it as race director. Check out our Facebook page and register here.

"I am going solo for Rock 2 Rock this year," Aimee says. "Normally, I am a consummate outrigger-canoe paddler and only dabble in the fine art of paddleboarding when the whimsy hits me. But I might as well put R2R under my belt because all of the money I raise and the training I put into it and the time it takes is dedicated to people suffering from sarcoma that I may never meet but can help through my efforts.

"It also reminds me that ordinary people can do extraordinary things and that being grassroots connects us to people that need our help the most."

On June 23, O2H will have its tent and information on sarcoma at the Jay Moriarity Memorial Paddleboard Race in Capitola, Calif. The race starts at New Brighton State Beach and honors a legendary surfer.

Sarcoma survivors are welcome guests at any of these events. In the photo below, for example, Aimee and Fred greeted Steven Alan Fry in April at the Waterman’s Applied Science Paddle for Humanity races in Dana Point, Calif.

The avid outdoorsman from nearby San Juan Capistrano had paddled in P4H races before. This year, he read a news release that O2H had become an official charity of P4H. He decided to attend even though he is undergoing treatment for metastatic Ewing sarcoma.

"I have a lot of pain and nausea," says the entrepreneur. "But it did me a lot of good to get out in the fresh air and meet the O2H paddlers. There's nothing I enjoy more than being out on the water among paddlers."

Steven is director of HPWA (Human Powered Watercraft Association), which "represents the interests of all human powered watercraft through public education, protection of natural resources, defense and expansion of public access and general promotion of the world's most environmentally friendly and healthy form of water sports."

He believes in a healthy lifestyle. So, when he was diagnosed in 2010, "it was like being hit by lightning." He had seen a doctor for a sore shoulder, only to find out he had sarcoma in his right scapula. He is in a Phase 3 clinical trial for Yondelis, which is approved in Europe, but not yet in the U.S.

"We still have a lot to do in providing health care to people in this country."

For other events, click here.

Ocean of Hope goes nationwide, starting 4/28

Aimee Spector of Redondo Beach is co-captain of Ocean of Hope.




By Suzie Siegel
Waterman’s Applied Science Paddle for Humanity has named us a charity partner for this year’s five events, beginning April 28 in Dana Point in Southern California. The series will continue June 2 in Deerfield Beach, Fla., near Boca Raton; July 7 in Lake Tahoe, Calif.; Aug. 25 in Washington, D.C.; and Sept. 15 in Austin.

When paddlers register, they can designate their favorite charity, which will get 20 percent of their fees. Net proceeds from the events also will be divided among the charity partners. We are grateful for this opportunity to raise funds and awareness.

In Dana Point, we'll have a tent on the beach for paddlers and anyone interested in talking to sarcoma survivors or learning about sarcoma. People who want to paddle need to register by April 26.

“This is a super-fun and beginner-friendly event,” says Spector. She and Ocean of Hope co-captain Fred Sardisco of San Pedro will help novices. Joe Bark will provide boards for people to use. Bark, a legendary boardbuilder and longtime supporter of O2H, also has donated a stand-up paddleboard for a raffle. Tickets are $5 each or five for $20. California residents can send checks made out to the Sarcoma Alliance to: Ocean of Hope, 1714 Havemeyer Lane, Redondo Beach CA 90278.

O2H is the Sarcoma Alliance's biggest fundraising campaign, with members racing on paddleboards and in outrigger canoes in California and Hawaii. Unlike some races, the Paddle for Humanity events can easily be viewed from shore, and spectators don't have to pay.

“Come out and cheer on the paddlers,” Spector says. The events will be:

-- 5K. “Compete against friends or simply paddle for the pleasure of it. The 5K results will be applied to World Paddle Association (WPA) rankings,” the website says.

-- Distance Over Time Challenge. “How far can you paddle in 60 minutes to support your favorite charity? Each paddler will be given one hour to complete as many 1.6K laps as possible.”

-- Chuck Patterson Signature Series 5-lap Rally Race. “Four around a 1.6K course and one alternate lap that will involve an additional physical and/or mental challenge. Results will be applied to WPA rankings.”

“I was introduced to O2H by several very passionate members, and the camaraderie surrounding the organization within the paddling community is worthy of notice," says Pete Stirling, brand manager for Waterman’s Applied Science in Buena Park, Calif. The company makes sun-protection products designed for high-intensity water sports and endurance athletes. "Waterman’s Paddle for Humanity was looking to expand our humanitarian reach during 2012 and O2H seemed a natural partner. I love how the organization focuses on community and awareness without losing track of either.”

Paddle for Humanity started in 2009, according to its website. “Since that time, the race has grown to become the largest national paddling series and has raised thousands of dollars for its nonprofit partners.”

"I like getting outside and being active while contributing to a great cause," says JoEllen, an oncology nurse who plans to paddle on behalf of O2H in the Deerfield Beach event. She's in the photo at right.

Ron Kabele, an eight-year survivor of metastatic leiomyosarcoma, has offered to staff a table at the Austin event. He's pictured with me

at last month's fundraiser in Austin.










The Sarcoma Alliance is seeking others who want to register on our behalf or sit at tables at the events in Deerfield Beach, Lake Tahoe and D.C. You don't need to be an expert on sarcoma -- we can provide educational materials.

Progress in gynecologic sarcomas

By Suzie Siegel

Women diagnosed with gynecologic sarcomas may be excited to hear about an effort to educate more oncologists as well as open more clinical trials.

The U.S. National Cancer Institute (NCI), the European Organisation for Research and Treatment of Cancer (EORTC) and the United Kingdom clinical trial system are working on an International Rare Cancer Initiative to design and fund trials, in hopes of improving treatment.

“I’ve been fighting LMS since 2010, and I’m happy to hear that there is collaboration between three reputable organizations who are sharing their research data to find a more effective treatment to help those with LMS,” said Nancy Bobick of Carlsbad (above), near San Diego.

In a news release, Ted Trimble (right), M.D., M.P.H., director of the NCI’s Center for Global Health in Bethesda, Md., said: “This initiative will allow us to perform trials for cancers so rare that none of us could have managed it on our own. Working together like this allows us to reduce the cost of trials for each partner organization, to speed development and conduct of rare cancer clinical trials, and to harness worldwide expertise in these rare conditions.”

The initiative will start with these five:

• gynecologic sarcoma
• penile cancer
• fibrolamellar hepatocellular carcinoma
• rare head and neck tumors (anaplastic thyroid cancer and salivary cancers)
• small bowel cancers

The first clinical trial approved under this initiative will be for women with high-grade uterine leiomyosarcoma that hasn’t spread outside their uterus, said Martee Hensley (left), M.D., the initiative’s U.S. chair for gynecologic sarcomas. She is a medical oncologist at Memorial Sloan-Kettering Cancer Center and Associate Professor of Medicine at Weill Cornell Medical College in New York City.

After surgery, women can choose whether they want to participate in the randomized Phase III trial. Half will be observed closely, but get no chemo, while the other half will receive gemcitabine (Gemzar) plus docetaxel (Taxotere), followed by doxorubicin (Adriamycin). The trial should open in a few months, Dr. Hensley said, and it is expected to last six years.

It is similar to a trial she conducted as part of the Sarcoma Alliance for Research through Collaboration. She said the final results of that trial should be published in a year or so.

The research on uterine leiomyosarcoma may be of interest to others working on leiomyosarcoma in other parts of the body as well as other sarcomas, Dr. Trimble said. “But each sarcoma is a little bit different.”

Nancy Bobick, whose LMS arose in her pelvic area, hopes the research helps her. She has had four surgeries and six cycles of Gem/Tax. She has insurance with Kaiser Permanente, and she wanted to see an oncologist with expertise in LMS. Kaiser would not pay for her to see someone outside its system, she said. She paid for it herself, and the Sarcoma Alliance reimbursed some of her expenses. Three new tumors have grown, and she learned last week that at least one is LMS. She faces more chemo.

Dr. Hensley said she and her colleagues in the international initiative also are planning trials for low-grade endometrial stromal sarcoma and high-grade undifferentiated uterine sarcomas.

I got a chance to talk to Dr. Hensley and Mario M. Leitao, M.D., a gynecologic oncologist at MSKCC, at the annual meeting of the Society of Gynecology Oncologists in Austin last week. The Sarcoma Alliance has had a representative at the SGO annual meetings since 2006, and three of its board members have survived gynecologic leiomyosarcoma, including me.

Drs. Hensley and Leitao led an educational forum on the diagnosis and management of uterine sarcomas, and doctors packed the large meeting space. I talked to some of the SGO staff, and this is the first such forum that we can remember. This year, the SGO changed its format to have smaller educational forums that run concurrently so that it could present more topics.

MSKCC also has developed a nomogram to help predict the survival of women with uterine leiomyosarcoma. Biologist Joan Darling, Ph.D., president of the Sarcoma Alliance cautions survivors that the nomogram should not be used after six months because the chances of survival go up the longer a person stays cancer free.

"Also, remember that there is no such thing as percent survival with regard to a single person. As long as the survival rate is positive, even if small, someone survives -- might as well be all of us!" Joan wrote on our Facebook page.

Drs. Hensley, Leitao and their colleagues also had an article in this month’s Gynecologic Oncology journal about uterine LMS that expresses estrogen or progesterone receptors. Women with these tumors go longer without their cancer advancing, as compared with women whose LMS doesn’t express ER or PR, the article concluded.

“We’ve made great progress on gynecologic sarcomas, in large part, thanks to Dr. Martee Hensley and Memorial Sloan-Kettering,” Dr. Trimble said.

Dr. Suzanne George, a sarcoma medical oncologist at the Dana-Farber Cancer Institute in Boston, has been conducting a prospective phase II study of letrozole (Femara) for patients with uterine LMS. Letrozole is an aromatase inhibitor (anti-estrogen drug) being tried in women whose LMS is receptive to estrogen.

In addition to current treatments and clinical trials, the SGO had intriguing posters on translational research. For example, gynecologic oncologist Matt Anderson, M.D., Ph.D., explained some of his:

“We have begun to comprehensively examine patterns of gene expression in uterine leiomyosarcoma, comparing them to both benign leiomyomas (fibroids) as well as healthy myometrium. We find that the overwhelming feature of uterine leiomyosarcomas (ULMS) is the overexpression of gene products that are involved in regulating a specific aspect of how cells control their proliferation. This feature is known as the 'G2-M cell cycle checkpoint’ and is frequently overexpressed in many cancers. Many different investigators have examined different genes involved in the G2-M cell cycle checkpoint and have found that they are frequently overexpressed in many other types of cancer.

“However, what is unique about what we have done is that we have developed a very thorough global view of how patterns of gene expression have changed," said Dr. Anderson, director of clinical and translational cancer research in gynecologic oncology at Baylor College of Medicine in Houston. "This has allowed us to start to map out pathways that we think drive leiomyosarcomas to grow/spread as well as identify drugs that have been developed for other, much more common cancers that could be then used to treat women with ULMS.”

The photo above comes from the 2007 meeting of the Connective Tissue Oncology Society. Alliance board member Deborah Gates (at left), a longtime survivor of ULMS, and I were happy to see him because gynecologic oncologists rarely attend CTOS. The Sarcoma Alliance loves collaboration across disciplines.

Austin fundraiser March 22-23

By Suzie Siegel

Artist Mark Goad and Rio’s Brazilian Café are helping the Sarcoma Alliance raise funds and awareness March 22-23.

This month, the cafe is exhibiting art by Goad, who has been a professional artist for more than 30 years. He created work depicting sunflowers and photographed them for cards that will be sold to benefit the Alliance. The cards will sell for $5 apiece or six for $20. They should be up shortly in our store.

I've known Mark since birth. We were born in the same hospital, an hour apart. Having a friend with sarcoma, he says, “has taught me so much about life and how people survive. No one needs to go through this alone.”

“I take recycled Texas King Cotton fiber pulp, steep it in natural dyes and local water," he says, explaining his artwork. "The liquid images are assembled on screens, and transferred onto drying blankets where they dry into sheets of textured paper. The cards are reproductions of sunflowers I made by tearing pieces of the paper into petals.”

I'll sell the sunflower cards and other merchandise March 22-23 at Rio's, 408 N Pleasant Valley Road, in East Austin, close to downtown. There will be a happy hour from 4 to 7 p.m. that Friday, featuring free appetizers, $1 off all beer and wine, and free caipirinhas, Brazil’s national cocktail.

Elias Martins, a native of Rio de Janeiro, is the chef. He and Ben Googins met in Brazil in 1998; they moved to Austin in 2006 and started selling their food at the Downtown Farmers' Market. In 2010, they opened the cafe.

Mark introduced me to Rio's, and the owners have been so enthusiastic about helping the Sarcoma Alliance. To show my support for them, I ordered their yummy cheese breads from Foodzie, and I’m really looking forward to eating my way through the rest of their menu.

I had planned to go to Austin anyway to represent the Alliance at the annual meeting of the Society of Gynecologic Oncology, as I've done since 2006.

Nominate excellent health-care professionals

Have you gotten excellent care from a doctor, nurse, social worker or other health-care professional? If so, nominate them for the Sarcoma Alliance's new Outstanding Care Awards.

People with sarcoma or their loved ones can write nominating letters to info@sarcomaalliance.org or Sarcoma Alliance, 775 E. Blithedale Ave. #334, Mill Valley, CA 94941.

Excerpts of nominating letters will be put on our website so that new patients and new health-care providers can see what we value. On the website, we already list multidisciplinary sarcoma centers, and we help reimburse patients who have to travel to a sarcoma specialist for a second opinion. We want patients to see doctors with up-to-date knowledge and expertise in sarcoma.

But it’s time to recognize other qualities: Do they listen? Do they communicate well? Do they show compassion, kindness and respect? Do they spend enough time with you? If something goes wrong, can they take charge to get it resolved?

An example of someone who provides outstanding care is Gina D’Amato, above, a medical oncologist in Atlanta, who won the Excellence in Care Award from the Leiomyosarcoma Direct Research Foundation in 2006.

“You guys are all about supporting the patient,” Dr. D’Amato said, explaining why she recently joined the Sarcoma Alliance board. She had just returned from a medical mission trip to Peru.

“I have all the respect in the world for her,” said Al Meller of Harrison, Tenn., who lost his wife Judy to leiomyosarcoma in 2005. For Dr. D'Amato's 2006 nomination, he recalled how she took them on a tour of her research facilities, "talking about the research she was doing, introducing us to some of the technicians, and showing us the equipment, etc." He recalled two other memories, from the beginning and the end.

“The beginning was the very first meeting when Judy and Dr. D'Amato met to discuss her possible admittance into the clinical trial of AP23573 [now known as Ridaforolimus]. While Judy still felt quite well, her situation was rapidly deteriorating after being dismissed by M.D. Anderson [Cancer Center], and she didn't meet all the criteria for admittance into the trial.

“Dr. D'Amato exhibited such a caring, friendly and confident attitude, and still held out hope for the trial or other potential treatments. Her hopes were backed up by action. She went to bat for Judy and obtained the necessary clearance. A move we both were very grateful for and remained so.

“At the end, while the clinical trial was successful for Judy, she succumbed to a combination of organ failures due to other causes. But the one aspect that I shall always remember is the friendly, caring, compassion Dr. D'Amato showed to Judy and I in the final days even after Judy had been placed in an end-of-life coma and was no longer under Dr. D'Amato's care.

“Daily, she would still come and stand by Judy's bedside and then visit with me. I have every confidence that helped Judy in her transition. I know her advice to me to seek counseling was helpful. I did so and it opened doors for me to start a new life - which I have. But those six months that we experienced Dr. D'Amato's care will always hold a very special place in my heart. I know they did in Judy's.”

Most doctors who work in comprehensive sarcoma centers are attached to universities, Dr. D’Amato said. They get promotions, pay raises, tenure, travel money, better facilities, etc., based on factors such as securing research grants, publishing papers and getting patents. They must be skilled clinicians, she said, and avoid patient complaints.

“But you don’t get extra points if your patients love you.”

Last fall, at the annual meeting of the Connective Tissue Oncology Society, Dr. Lee Helman, a cofounder, also talked about academic medicine. He said many papers submitted to CTOS – maybe as many as half – did not advance the science of sarcoma.

“We know it’s irrelevant, but I understand the need to publish,” said Helman, scientific director for clinical research at the Center for Cancer Research at the National Cancer Institute in Bethesda, Md.

Although the Alliance has oncologists on its Medical Advisory Board, Dr. D’Amato is the first M.D. on its Board of Directors, said Executive Director Arthur Beckert of Mill Valley, Calif., where the national nonprofit was founded in 1999.

Dr. D’Amato is the global medical director of TRM Oncology, a medical communications company. Previously, she worked at Moffitt Cancer Center in Tampa and as director of sarcoma medical oncology at Emory University in Atlanta. She has nine publications and has spoken nationally on sarcoma research and patient care. She helped start a sarcoma patient support group, and she has long encouraged patient involvement.

Cold Hands Paddle on Sunday

If you are in the Southern California area on Sunday, head to Cabrillo Beach in San Pedro for the Cold Hands Paddle. Not only can you enjoy live music and cheer on the paddlers, but there also will be a Sarcoma Alliance booth staffed by some of the great people who volunteer for us.

The photo is from last year's event. Brrrrr.

Cold Hands is a sponsor of Ocean of Hope, a series of paddleboard and outrigger-canoe races in California and Hawaii to raise money for the Sarcoma Alliance. A stand-up paddleboard, donated by Joe Bark, will be raffled off.

Lifestyle choices: sarcoma v. carcinoma

Carcinomas occur more commonly among older individuals and can be attributed to various lifestyle choices. Smoking cigarettes, having a faulty diet, and lack of exercise can all contribute to the development of a carcinoma. In contrast, sarcomas can occur in people of all ages – from newborns, infants, teenagers, to young and mature adults. Also unlike carcinomas, a sarcoma isn’t thought to be associated with any lifestyle choices. You can’t get sarcoma from eating the wrong foods, making love, or from insufficient exercise.

-- from SARC (Sarcoma Alliance for Research Through Collaboration), a cooperative of the top U.S. sarcoma doctors

By Suzie Siegel

Let the party begin!

All joking aside, this information matters to the science of sarcoma and the treatment of patients. Scientists need to know what does and does not cause sarcoma so that we can do a better job of prevention.

People who are athletic, eat a healthy diet, don't smoke or drink, take vitamin supplements, etc., can still get sarcoma. They may say: "I did everything right! It's not fair. How could I have gotten this terrible cancer?"

No matter what their lifestyle, most people diagnosed with sarcoma will wonder what caused it, and many will feel guilt or shame that they did something wrong. One man I knew went on a very strict diet, but when his sarcoma returned, he questioned whether it was his fault for eating a slice of pizza months before.

Once, I listened in disbelief as an RN told a patient that her bad diet had caused her sarcoma, and now she had to eat better. The patient was getting chemo, and she was not supposed to eat salads or raw fruits and vegetables, unless they could be peeled.

Some chemo patients struggle with nausea and vomiting, not wanting to eat anything. I remember another woman who was dangerously thin, and her loved ones kept stressing that she had to eat only the most nutritious foods. Her sarcoma specialist and a registered dietitian told her that she could eat candy bars if that's the only thing she could stomach. That advice, plus better medical treatment, allowed her to put on weight and regain strength. Of course, she didn't eat only candy bars, but a candy bar now and then helped.

Please don't get me wrong -- I'm not saying that lifestyle doesn't matter at all. It makes sense to do what you can to strengthen your body for whatever may lie ahead. Just don't blame yourself for your sarcoma.

Watching sarcoma on TV

by Suzie Siegel

You can understand why TV writers love rare diseases. They sound exotic and scary, and if the script gets it wrong, not that many people will know.

I wrote about this in 2010 in regard to an episode of “Grey’s Anatomy” involving a ballet dancer. Last month, “Grey’s Anatomy” and its spin-off, “Private Practice,” had crossover episodes featuring a woman with gliosarcoma. I asked Ralph Lehman, a Tampa neurosurgeon, to watch "Private Practice."

"Gliosarcoma ... is a rare variant of glioblastoma and, as best I know, they do not survive more than a year after surgery and most far less," he said. “The doctors talked to the patient as if she would be cured. You wouldn’t want to give that impression.”

Other aspects struck him as curious: "I don’t think anyone puts stents into brain arteries to do their tumor surgery. Sometimes one might (very unusual) put a catheter up into the neck vessels or even up into a vessel in the head itself but this is introduced from below and is therefore pulled out from below, not through the craniotomy defect (i.e., from the surgical field itself).

"The tumor was on the right side of the head and someone mentioned possible speech defects as a hazard of surgery. Unlikely unless the patient was left-handed. The postop recovery seems a bit rapid and the dressing a bit scant, but it is TV."

Here are some more thoughts about sarcoma on TV:

Understand that surgery may not be a cure-all. When a surgeon says he got all the cancer, a lot of patients think they’re cured, and sometimes they are. But doctors need to know how to deliver bad news, just as they need to know how to give hope. They need to take the time to explain your disease to you, and they need to plan for follow-up care.

You need a specialist, at least for a second opinion. The Sarcoma Alliance recommends multidisciplinary sarcoma centers and children’s hospitals with experts in sarcoma pathology, radiology, medicine, surgery, social work, etc.

“You don’t want the person running the CT scanner doing your neurosurgery,” joked Executive Director Arthur Beckert of Mill Valley, Calif.

“On TV, the same doctors see you in the ER, the OR, the ICU and the floor,” said board member Marites Tullius, laughing. She’s a nurse practitioner in a Los Angeles County hospital. “They know everything about everything.”

Last year, "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, and they were so moved that they did more research and came up with a way that he could keep his leg.

Don’t dance around – see a specialist who already knows the latest techniques.

Oncologists generally don’t treat both adults and children. For example, the ballet dancer was treated at Seattle Grace, not by an oncologist in a children’s hospital.

“It has always bothered me that regular TV doctors treat pediatric cancer patients. They did on ‘ER,’ ” said board President Joan Darling, a biologist in Lincoln, Neb., who watched the show with her daughter when the teen was being treated for rhabdomyosarcoma.

The same thing happened last year on “House,” when a teenager was diagnosed with a “lymphoid sarcoma” of the humerus. The doctors decided on amputation, but the girl refused because she hoped to set a record as the youngest person to sail solo around the world. A medical student gave the girl a medication to cause a cardiac incident, and when she was unconscious, her parents signed a consent form for the amputation.

Seek a second opinion. The Alliance has an assistance fund to help reimburse people who seek a second opinion from a sarcoma specialist. That’s what the girl with "lymphoid sarcoma" needed.

Alliance board member Gina D’Amato, a medical oncologist in Atlanta, wondered if the scriptwriters meant lymphosarcoma, which would be treated with chemo like a lymphoma, not with amputation. Or, was it a subtype of soft-tissue sarcoma that arose in a lymph node and spread to the bone, or a bone sarcoma that spread to a lymph node? In any case, she said, the parents would want to consult with someone experienced in sarcoma.

You have the right to informed consent. No one should force or trick you into treatment. Doctors should fully explain procedures, risks and side effects. Sarcoma centers also should have social workers who can help patients make medical decisions.

Test results often take time. In “House,’’ the girl’s pathology results came back within a day. In “Private Practice,” Dr. Lehman wondered how the surgeons were sure the woman had gliosarcoma before pathologists examined a tissue sample.

I've waited a couple of weeks for results. Also, sarcoma often is misdiagnosed at first. Mine was. You need a pathologist experienced in sarcoma to confirm the diagnosis.

For more on medical myths, see this and this.

Sarcoma Alliance seeks volunteers

The Sarcoma Alliance gives education, guidance and support, and some people want to give back.

“The Alliance has amazing, committed volunteers, but we can always use more and would love to have volunteers in every state,” says board member Alison Olig, at right, who will help revamp the volunteer page on the Alliance’s website to include an interactive application and a more extensive list of needs. “Our goal is to match an individual volunteer's skills and interests with our volunteer needs.”

Needs include: updating website content, hosting or assisting at fundraising events, shooting photos or video, starting a support group, talking to other patients, monitoring the discussion board, and writing grants, she says. “We also encourage interested individuals to propose their own volunteer ideas, as we are always open to new, creative forms of assistance!”

The latest creative idea: Some crafty volunteers have offered to sew tote bags out of sunflower material. The Alliance has made the sunflower a symbol of hope for sarcoma patients. It's looking for other volunteers, as well as sunflower material. The tote bags will include information on sarcoma and resources, such as the Alliance’s Assistance Fund, which helps reimburse patients who seek a second opinion from an expert in sarcoma.

“I think the tote bags will definitely be appreciated by sarcoma patients,” says volunteer Sandy Williams, above, of Huntington Beach, Calif., a survivor of malignant fibrous histiocytoma. She has begun the hunt for materials. “When I was first diagnosed, I was flying blind. I made many mistakes, including having my first surgery done by a general surgeon.” After he saw the tumor, she says, “he realized it was way above his abilities and he sewed me back up.

“Getting information on second opinions is life-changing and life-saving.”

New board member Kellie Flynn of Tustin, Calif., agrees. That’s why she volunteered to help administer the Suzanne Renee Leider Hand-in-Hand Assistance Fund, named after the Alliance's founder.

“This is a cause near and dear to my heart on many levels,” says Flynn, right, who had leiomyosarcoma. “I truly believe that I had a terrific doctor in that he checked his ego at the door and told me that he would not be treating me, but that he would gather the appropriate doctors and seek counsel from those doctors who were knowledgeable in sarcoma.

“Also, it is extremely important to me to support Suzanne's legacy. I am very close with Sharon Leider, Suzie's mother. I believe her vision was revolutionary in establishing the Assistance Fund.”

Flynn has volunteered for sarcoma patients for years, having facilitated a sarcoma support group at the Gilda's Club in Chicago and helping with Ocean of Hope, an Alliance fundraiser that consists of ocean races.

“I chose to participate in the Alliance because I feel that I am one of the lucky ones who survived this rare and aggressive cancer and feel compelled to make a difference in the lives of others. I had sacrificed a lot during my diagnosis and treatment, both with my health and my finances, to make sure that I had the appropriate care I needed for a fighting chance to beat this disease. It was a huge price to pay. I went in to business for myself to repay my medical debt and begin a new life for myself. I am now in a position, both personally and professionally, to give back."

Olig, of San Rafael, Calif., was diagnosed with alveolar rhabdomyosarcoma, a pediatric cancer, at age 13. “I cherish each day as a gift not to be taken for granted. I advocate on behalf of childhood sarcoma patients and raise awareness of the long-term side effects that often plague survivors.”

Board members are all volunteers. Although a national nonprofit, the Alliance has many volunteers in California because it was founded in Marin County and has its largest fundraiser in Los Angeles County.

Grant will update Peer-to-Peer Network

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

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

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

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-UK, and sarcoma centers, such as the Huntsman Cancer Center in Salt Lake City and Moffitt Cancer Center in Tampa, 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 Bruce 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.

The photo shows Dan surrounded by his daughter, Madelyn, in goggles and his triplets: Sadie in the green PJs, Avery in red, and Quinn in blue.

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

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

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.