Saturday, December 1, 2012

Facebook page to provide daily news

By Suzie Siegel

I've started following the news on sarcoma every day, posting to our second Facebook page and Twitter.

The Alliance created the page in April, and we asked our friends to "like" it, but we've just now put it on the front page of our website so that people won't have to find it by accident.

Our original Facebook page has become a place for people to exchange information, advice and support. It's popular, but news can get lost among the conversations.

Online support groups often attract people who are newly diagnosed or have ongoing health problems. Some people can't handle the sad posts and they drift away. Other readers just want the facts. Our new Facebook page will let them keep up with what's going on.

Be sure to look at the timeline because I've backdated posts to display older news that's still relevant.

The mainstream media often make mistakes when doing stories on sarcoma. What gets published in journals or by institutions doesn't always add much to our knowledge, or the writing is so technical that few patients can understand it. I hope my experience as a newspaper reporter and editor will help me choose news that's really new and put it in everyday words.

Tuesday, November 20, 2012

International sarcoma conference raises hopes

By Suzie Siegel

The annual meeting of the Connective Tissue Oncology Society in Prague attracted the most sarcoma scientists and physicians ever.
About 750 attended, along with spouses and other guests, said CTOS President Jay Wunder, surgeon-in-chief at the University of Toronto.

“We’re seeing lots of new animal studies, new markers. It’s all getting us closer to new treatments," said Wunder, an orthopedic surgeon.

"What we need is more clinical trials to test them,” said medical oncologist Scott Schuetze, director of the Connective Tissue Oncology Program and medical director of the Clinical Trials Office at the University of Michigan Comprehensive Cancer Center in Ann Arbor. Michigan hosts the Sarcoma Alliance for Research through Collaboration, which helps doctors in different institutions cooperate on clinical trials.

“A bunch of us sat together and said, ‘It’s not about us. We need a collaboration on neutral ground,'" said SARC co-founder George Demetri, a medical oncologist who directs the Center for Sarcoma and Bone Oncology at the Dana-Farber Cancer Institute in Boston.

Michael Leahy, a consultant medical oncologist for the Greater Manchester and Oswestry Sarcoma Service at The Christie in England, said he sees more cooperation and less deference to “key opinion leaders.”

"This particular year, this particular meeting, we’re moving away from the individual physician being in charge of everything to more networks with a more collegial approach in determining better treatment," he said. "It’s medicine growing up, isn’t it?”

Despite the cooperation, one difference seems clear: On average, U.S. doctors give more chemotherapy to sarcoma patients than do their European colleagues, and those in northern Europe give more than those in southern Europe.

In Europe, there is more pressure to reduce costs, said Jean-Yves Blay, head of the Medical Oncology Department at the Centre Leon Berard in Lyon, France. He also is the director of Conticanet, a network funded by the European Union and dedicated to new treatment approaches in sarcomas.

This is related to how health-care systems reimburse doctors and hospitals, said medical oncologist Shreyaskumar Patel, medical director of the Sarcoma Center at M.D. Anderson Cancer Center in Houston. Under capitation, for example, a doctor would get a set amount for treating a patient, and would have to work within that budget.

“In the U.S., it’s easier to get things paid for,” said medical oncologist Lee Helman, head of the Molecular Oncology Section of the Pediatric Oncology Branch of the National Cancer Institute in Bethesda, Md. In general, he said, health-care systems in Europe require more proof that a treatment works before paying for it. 

But clinical trials, which might provide that proof, have a harder time enrolling patients with rare cancers like sarcoma, as opposed to common cancers, said Paolo G. Casali, a medical oncologist who heads the Adult Sarcoma Medical Oncology Unit at the Istituto Nazionale Tumori in Milan, Italy. He coordinates the European Action Against Rare Cancers for the European Society for Medical Oncology.

Regulators should accept a higher degree of uncertainty with rare cancers, just as “we share this uncertainty with our patients at the bedside,” he said.

European doctors are more willing to stop treatment, Leahy said. "We do have a much more conservative approach in Europe, and England certainly. I always feel like I’m walking a tightrope between over-treatment and under-treatment. You don’t want to be nihilistic, but you don’t want to give false hope either."

European patients don't seem to demand as much treatment, said medical oncologist Sant Chawla, director of the Sarcoma Oncology Center in Santa Monica, Calif.

“If they’re 80 years old and have had a heart attack, stroke, etc., we shouldn’t be giving them chemo. They’ve lived their life." But others can be cured or get more years. “We need to shoot for the stars,” he said.

The argument over how much treatment is too much applies more to adults, Helman said. "Pediatric sarcomas, in general, are more responsive to chemo. You’ll try anything for a kid.”

“I fail all the time, but if you don’t try, you’ll never succeed,” said Robert Benjamin, chair of the Department of Sarcoma Medical Oncology at M.D. Anderson. CTOS gave him its Herman Suit Award, and he talked about how he has learned from his patients.

His lecture brought tears to my eyes. I sometimes hear from people who think doctors are just in it for the money, or they already have the cure for cancer but are keeping it secret so that they don't lose their jobs. I wish they could see how much these doctors care about their patients.

Pathologist Stefano Sioletic, a pathologist who researches the c-jun oncogene in liposarcoma under Demetri, has gone to other conferences on cancer research.

“I don’t get any stimulus from them, and they don’t care what I do,” he said. At CTOS, “I know I won’t get a question like, ‘What is liposarcoma?’ You find out what people are doing around the world.”

The Sarcoma Alliance was well-represented at the conference. In addition to our executive director, four board members paid their way. For more information on CTOS, go to The page also has searchable abstracts.

Wednesday, September 19, 2012

No. 1 in the Catalina Classic

By Suzie Siegel

Competing in the Catalina Classic Paddleboard Race for sarcoma patients last month, Steve Shlens took first in the stock category, for boards no longer than 12 feet.

"I put a lot of time and effort into this year's race and it fortunately turned out well. I managed to finish in 5:56:03, just 32 seconds short of the all-time stock board record set in 1999 by Gary Fortune. I believe it's the third-fastest stock board crossing in the race's history."

The 32-mile race from Catalina Island to Manhattan Beach in Los Angeles County began in 1955. This was the first time that Steve, above, raced as part of Ocean of Hope, the Sarcoma Alliance's biggest fundraiser. It started at the Catalina Classic in 1999, and now consists of paddleboard and outrigger-canoe races across the country.

"This is THE race, the original distance paddleboard race which started in 1955. This is the one to which all others are measured, judged, and compared," Steve wrote on his blog.

"I was completely spent by the end of the race," "But I know anyone who is fighting a sarcoma, or any disease, would have gladly changed positions with me. It's why I joined O2H in the first place, hoping I could help others and make a small bit of difference for them.

"I had a goal of raising at least a thousand dollars and was thrilled that I met that goal. My contributors are all very special people so this meant a great deal. I also was honored to place the names of real fighters on my board -- to paddle with them across the channel.

"I'm thrilled to have been a part of this team effort!"

If people raise $3,000, they can have their name on a paddleboard. Steve had Suzanne Leider's name on his board. O2H co-captain Aimee Spector had Bob Chambliss and Tracey Talley, and Phil Ambrose had Wendy Sommers and Josephine Schiavo. I was thrilled to have my name on Steve Shikiya's paddleboard. All of the boards also carried a sticker for Laura Sardisco, who had surgery for breast cancer. She is the wife of co-captain Fred Sardisco.

Of the 77 paddlers, Steve Shikiya was 23rd overall, paddling in the unlimited class, which dominated the water. Mike Rogers and Joel Pepper trained this year, but injuries kept them from racing.

Mark Schulein, former team captain, is the top fundraiser, with $12,025 so far. Next is Aimee, with $5,305, followed by Phil at $1,851.

Phil came in 62nd, just under 7 hours. With perfect conditions, paddlers were setting personal bests.

"In the middle of the channel, the water was very warm and super clear. Seeing the fish below me, I was mesmerized, but I had to take my eyes off it," he says, and focus on the race.

"It felt like I was really racing, not just participating and finishing. I felt really good. I was racing against myself. I feel like I could do it all over again," he said the day after the race. "I feel strongly about doing better next year."

Aimee did what few women have. She was one of seven women in the Classic, the most ever, and she placed third among them.

"I felt honored to be out there with so many incredible athletes. I will definitely be out there again ... in a couple of years."

She finished just after famous board shaper Joe Bark, who donated two paddleboards to the Ocean of Hope this year, as always. One was raffled off after the Classic; the other had been claimed at the Cold Hands race this spring. They brought in $3,000.

To donate to Aimee, go to For the other paddleboarders, visit

Thursday, August 16, 2012

Catalina Classic: The guy who finishes

By Suzie Siegel

For three years, Phil Ambrose has raised money to help sarcoma patients. This year he helped one by telling her about the Sarcoma Alliance.

"Six weeks ago, a friend's wife was diagnosed with sarcoma," says Phil, in the photo with his son Caden after a tandem event. "It was quite the life-changing event.

"Things are looking great for her now, but in the first few weeks I put them in contact with SA and they were stoked with the response. They were very happy with the information on second opinions."

Phil paddles in the Catalina Classic Paddleboard Race for the Ocean of Hope, the Alliance's largest fundraising campaign. Joining him this year will be Joel Pepper, Steve Shikiya, Steve Shlens, Tyler Resh and O2H co-captain Aimee Spector. Fred Sardisco, the other co-captain, and Mike Rogers will be helping on the beach.

The race will be Aug. 26, and O2H will have food and merchandise under its tents on Manhattan Beach in Los Angeles County until 3-4 p.m. Anyone who wants to help with the set up should come at 8 a.m.

I went last year, and it was great to talk to other sarcoma survivors and hang out on the beach. Board shaper Joe Bark donates paddleboards each year for our raffle, and they are a work of art.

People who raise $3,000 can have their name or the name of a loved one on a paddle- board. In the photo, Phil's board carries the name of Wendy Sommers, one of the founders of the Sarcoma Alliance.

“This year things are very busy for me with work and family, but O2H has drawn me back in,” says Phil, who lives in Rolling Hills Estates and works as a firefighter and paramedic. He also has his own hazmat-training company based on a patent-pending training system. “I’ll find time to train for the Classic, I’ll finish the race, and I’ll pray that there are no new names to put on our boards."

He fits in most of his training when his two sons are in school. He has less time in the summer -- when most paddleboard races are held. "Do the math," he says.

"I'm hardly the super athlete. I'm the guy who finishes." 

Boats bring the paddlers to Catalina Island in the predawn dark, and the 32 miles to Manhattan Beach is a "super marathon." 

"It's not like someone walks 5 miles to raise money. The crossing has unpredictable currents. And sharks. But boats are the biggest problem. In the back of the pack, there are more boat wakes and, as time goes by, the conditions may worsen. Good news is I don't have to ask for directions.

"I call it the last frontier."

"My first year, I was dead last ... well, the last male." He had heat stroke by the time he came ashore. During the second race, "I vomited for the first three miles. Last year, I got seasick on the way over."

"My mother had leukemia, and now she's doing great. Crossing the channel, even on the worst day, is nothing compared to what people with cancer go through."

Phil learned about O2H and the Sarcoma Alliance after noticing the logos on paddleboards and asking Fred, "a great guy." 

"It's a true volunteer organization. I'm proud to be a part of it." He says he also enjoys "the common bond with the ocean-centric group.”

"Water is my passion. I love getting in the water."

Follow the fun on Facebook. Donate to the paddlers here:

Wednesday, August 15, 2012

Volunteering in Hawaii

Ocean of Hope volunteers will do almost anything to get the word out - even "selling" the Sarcoma Alliance on Craiglist.

"Each year, the Sarcoma Alliance holds an Ocean of Hope (O2H) campaign in California that has raised over $600,000 in support for sarcoma patients and their families," read the ad. "This year, the Sarcoma Alliance & the Ocean of Hope will be coming to Oahu to host a tent at this year's Molokai 2 Oahu Paddleboard World Championships race. Come join us - be a part of this volunteer-based event and support the worldwide paddleboarders at the finish line!!!"

Danmerle Capati, O2H coordinator for the Islands, listed the July 29 event on the Aloha United Way website and placed the Craigslist ad.

"I thought it was a perfect (free) way to communicate that a Sarcoma Alliance community can be built locally in Hawaii," said Danmerle, adding that the listings brought in several people whose lives had been changed by sarcoma. "The Ocean of Hope campaign has some amazing athletes, and the paddling community has recognized their efforts. That's been a milestone."

A new O2H member this year is Steve Shlens, a lawyer from Santa Barbara, Calif. Chris Aguilar took the photo of him, above. Dan Van Dyke took the one below.

"Managed to get first in my division with paddle partner Dan Van Dyke of San Diego. We had a lot of fun with no expect- ations, so the award was a little bonus. This was my second Molokai race but the first time with O2H. I like the group, the cause, and feel proud to hopefully shine a bit of light on it."

This photo shows Dan, Steve, O2H co-captain Aimee Spector, volunteer Liz Lee, Danmerle, and Stephen Caldwell, a k a "Reno" and "The Redondo Rocket."

Growing up in South Bay, Steve Shlens said, "I paddled as a teen, got out of it, and began paddling again at 38.

"I did compete in a number of other races this year. Seven in all, I believe. Generally did well with second to Jack Bark in five and first in the others."

Next up is the Catalina Classic Paddleboard Marathon, "the grand-daddy of paddleboard races around the world. The original long- distance paddling endurance race."

O2H members Steve Shikiya of Palos Verdes Estates and Joel Pepper of Redondo Beach, who competed in Hawaii, will join teammates Aug. 26 for the Classic in Manhattan Beach, Calif.

O2H started in 1999 -- the same year that Mercedes "Mercy" Capati of Oahu's Ewa Beach was diagnosed with leiomyosarcoma.

Born in the Philippines, Mercy married a Navy man and settled in Hawaii, where she worked for the Defense Finance Accounting Service. Her kindness to another Navy wife was detailed in the story "Mercy" in "Chicken Soup for the Military Wife's Soul." Like others with metastatic disease, she had tough times, "but she had some really good times as well," daughter Danmerle recalled.

"She was such a fighter. I have always been proud of her."

Danmerle began volunteering for O2H in 2009, two years after her mother died.

"I'm all about patient advocacy and empowering people who need help the most," said the social worker and musician who now lives on the North Shore. She called the Alliance's Assistance Fund awesome for helping reimburse expenses for patients who seek a second opinion from an expert. She also praised the Peer-to-Peer Network, explaining that emotional support "is a huge part of treatment."

Wednesday, July 25, 2012

Congressional resolution supports July as Sarcoma Awareness Month

By Suzie Siegel

A resolution has been introduced into the U.S. House of Representatives to designate July as Sarcoma Awareness Month. It may not pass this month, but we need to keep working to get cosponsors, in hopes that it will be approved before next July.

"Given that sarcomas represent a group of deadly, orphan cancers, raising awareness is of particular importance," said R. Lor Randall, MD, FACS, past president of the Connective Tissue Oncology Society. "Affecting the young and old indiscriminately, sarcomas can arise and spread to any part of the body. Funding for sarcoma research and care is disproportionately scarce. So, to wax awareness by choosing July as Sarcoma Awareness Month is a step in the right direction to help us better battle these nefarious and often publicly clandestine diseases."

Dr. Randall holds the L.B. & Olive S. Young Endowed Chair for Cancer Research and is director of Sarcoma Services & Chief, SARC Lab; and professor of orthopaedics at the Huntsman Cancer Institute & Primary Children's Medical Center, University of Utah in Salt Lake City.

"We wholeheartedly support this resolution," said Matt Alsante, executive director of the Sarcoma Foundation of America. "Patients often don't know that sarcoma nonprofits exist that can provide resources -- and hope."

In 2007, the Sarcoma Alliance worked with the SFA, its sister organization, as well as the Northwest Sarcoma Foundation to gather support for July from other nonprofits.

I live in Tampa, in the district of U.S. Rep. Kathy Castor (D-FL), at left. The Alliance gives great thanks to her for introducing House Resolution 722, as well as to Reps. Joe Baca (D-CA) and Patrick Meehan (R-PA) for cosponsoring the resolution.

Brandon D. Ibarra, the Barbara Jordan Health Policy Scholar in Rep. Baca's Washington office, had contacted the Sarcoma Alliance to ask for our support of House Resolution 652, the Claire Frick Rhabdomyosarcoma Awareness Act. We told Rep. Baca, at right, about our resolution, and he quickly cosponsored it. This is what he said about Claire:
"Claire was only 16 years old when she was diagnosed with Stage 4 alveolar rhabdomyosarcoma, and lost her battle with the disease on March 1, 2012, at the age of 18. She fought for 20 months while continuing to sing in her school choir, participate with speech team debates, travel across the country, and maintain excellent grades, which placed her among the top in her class.
"During this time, Claire endured 35 rounds of chemotherapy, 58 days of radiation, 70 days in the hospital, seven surgeries, several MRIs, PET scans, bone scans, and bone marrow biopsies. She serves as a true inspiration to not only other children facing cancer, but to adults everywhere as well."
Because the Alliance hopes for bipartisan support, we were delighted to receive this message from Maureen Keith, communications director for Rep. Meehan, at left: "Congressman Meehan is honored to cosponsor the resolution in memory of Daniel Schultz’s life and his dedication to sarcoma awareness."

Dan, who lived in Bryn Mawr, Pa., had contacted the Sarcoma Alliance last year, offering to help get a resolution passed. This month, I messaged him with the good news that a resolution had been introduced, only to get a reply from his wife, Susan, saying he had passed away in June.

"I would do anything to help promote awareness," she replied. "Each day seems to get harder right now as reality sets in."

She sent what Dan had written about Sarcoma Awareness Month a year ago on his CaringBridge site:
"Such a designation will help elevate the status of sarcoma with the American Cancer Society and in other ways, which will bring information to light in more relevant/visible places. Many of my family and friends have outreached to our congresspersons.
"Sarcoma is a rare and nasty cancer," wrote Dan, who had undiffer- entiated pleo- morphic sarcoma. Doctors often misdiagnose sarcoma, it's hard to treat and "tends to be deadly or disfiguring." He got a miracle: a good response to chemotherapy for months.
"We have also been fortunate to have, between Penn and Mayo, access to world-renowned health care and to have fantastic, ongoing support from everyone around us.
"So after waking up to my morning ritual of self-reflection yesterday morning and asking for God’s strength as I enter into my 8th round of chemo for this drug regimen on Monday, He granted me one of the best reminders of what life is really all about. We celebrated our 15-year reunion from Villanova with some old college friends. Spending the day connecting with great friends and watching our children play together was an honor and a blessing. Yesterday I met my objective...I had fun with my wife and kids, I listened to my friends talk about their joys and sorrows and I realized all that is great in my life!"
In December, I featured Dan and Joni Freedman of Palm Harbor, Fla., who's now in hospice. Compared with the blog photo in December, there's a poignant difference in 9-year-old Madelyn's expression in the more recent photo above. The 6-year-old triplets are, from the left, Avery, Quinn and Sadie.

Joni's representative is Congressman Gus Bilirakis, R-FL. We are eager to hear if he can support the resolution, too.

To read more about Sarcoma Awareness Month, click here. Emailing, writing and calling are the most effective ways to get your representative to cosponsor our resolution. But we also have started a petition here. If you fill in your information, an email will be sent to your representative. Only your name, state and comment will show up on the petition site.

23andMe Sarcoma Research Initiative

The 23andMe Sarcoma Research Initiative is very close to reaching the 1,000 patient recruitment milestone. They currently have 986 individuals enrolled. They are making a final call for participants over the next week so this is the last time for anyone who has considered participating to do so before enrollment closes. It is very simple to participate; only a mouth swab is required. They are very excited about this progress and look forward to continuing to work with the Sarcoma Alliance, patient partners, and their scientific advisors to analyze the data and move the research forward.

For more information visit:

Tuesday, July 3, 2012

A successful swing

By Suzie Siegel

The Swing for Sarcoma was a great success, netting about $2,000 for the Sarcoma Alliance as well as connecting sarcoma patients and advocates.

About 70 people attended the concert at the First Unitarian Church of Dallas. Up first was Stevie Stix & the Uptown 6, the church's acclaimed jazz combo, followed by Merry and the Mood Swings, a 2010 Grammy contender.

Church member Mary Hestand (above), who sings in both bands, helped organize the fundraiser.  The other Mood Swings are: Michael Byron, Martha Germann, Mary Guthrie and Diane Harris. Jazz band members are: Steve Crozier, Fred Garza, Dickey Johnson, Tina Malone, Bill McDonald, Stephen Potter and Jack Reed. Alan Tubbs ran sound.
In addition to Mary, the other organizers were Francoise Colley of Coppell, on the left, Jean Walton of Bedford on the right and me in the middle. Jean's husband Dennis, daughter Amelia and granddaughter Maddy helped with the set-up.

We three donated items to the silent auction. Below, Arden Tubbs looks at a Christian Dior scarf.

The Sarcoma Alliance was honored to have representatives from three nonprofits based in the Dallas area. We talked about ways that we could collaborate.

Mac and Lisa Tichenor run the QuadW Foundation in honor of their son, Willie. They give grants for sarcoma research, among other causes. Carol and David Basso created the 1Million4Anna foundation this year in their daughter's name. They raise money for Ewing's research and give scholarships to Ewing’s patients.

Also new this year is the Eric D. Davis Sarcoma Foundation, founded by his daughter Nia and wife Zanetta. (Nia's cousin, Carlton Trigg, also attended.) The foundation raises money for research, and its Provide the Assist program gives travel grants up to $500 to patients who go to the University of Texas-Southwestern Harold C. Simmons Comprehensive Cancer Center in Dallas or the UT M.D. Anderson Cancer Center in Houston.

This complements the Sarcoma Alliance's Assistance Fund, which also gives grants up to $500 to reimburse the expenses of getting a second opinion from sarcoma experts.

If you live in the Dallas-Fort Worth area, drop by the Applebee's in Garland on July 14 for a Flapjack Fundraiser for the Davis Foundation.

Speaking of delicious food, the Main Bakery in Grapevine was our most generous donor in that regard: three trays of mini-sandwiches stuffed with chicken salad, turkey and Swiss cheese, and tomato and pesto; and a tray of lemon bars, brownies and raspberry nut bars.      

Brinker International gave us appetizers from Chili's: buffalo wings, crispy chicken with ranch dressing, nachos with cheese, chips and salsa, and chicken and vegetable egg rolls. Costco's gift card bought croissant sandwiches with turkey and Swiss, roast beef and cheddar, and ham and cheese. 

Mary Hestand and her family made two hefty pots of bean and pozole stew. Susannah Garza made cake balls, Ellen Guiling donated the Asian snack mix, Cyndi Damon donated cookies, and Patricia and Phil Macmillan donated bottled water. Mr. and Mrs. Pat Daly of the Coppell Community Gardens donated fresh sunflowers, a symbol of hope for sarcoma patients. Lisa Warner and Kaz Ferns worked the door.

Our great thanks to the church, the businesses and all the people who helped out in one way or another. As a sarcoma patient myself, I can say: We can never repay what so many kind people have done for us.


Tuesday, June 5, 2012

Swing for Sarcoma in Dallas

By Suzie Siegel

Celebrate — or recover from — Father’s Day with live music to raise money for the Sarcoma Alliance 5-9 p.m. June 17 at the First Unitarian Church of Dallas.

Stevie Stix & the Uptown 6, the church's acclaimed jazz combo, will perform first, followed by Merry and the Mood Swings, a 2010 Grammy contender.

In D Magazine, Darryl Smyers said: "Merry and the Mood Swings, a gifted quintet of women ... plays new wave, blues, soul, and '60s- and '80s-inspired [music], all with an irreverent and whimsical lyrical bent ..."

I swear you'll have fun, but then again, I'm biased because my good friend Mary Hestand sings in both bands. I'm indebted to Mary, who spent much time with me when I had my first surgery in Dallas, my hometown. She lives in Dallas, but has flown to Tampa, where I live now, to help care for me when I've been sick. She also has played guitar and sung for other sarcoma patients. I'm grateful to her bandmates for volunteering their time, too.

Mary is a senior administrative associate in the Department of Molecular Genetics at the University of Texas-Southwestern Medical School in Dallas. She has been there 17 years. She's in a yoga class with Francoise Colley, who worked 12 years there. She retired a year ago as administrative coordinator in the Dean's Office.

Leiomyosarcoma is supposed to occur in only one person in 4 million. But Mary ended up with two friends with LMS: I was diagnosed in 2002 and Fran in 2008.

"At work, everyone was super kind and supportive and, of course, my family and friends lifted my spirits," says Fran, who lives in Coppell. Fran and I talked by phone and email before I met her in person in 2009, along with her two sisters, Martine and Christine. Fran is now seeking donations of food and drink for the June 17 fundraiser.

"I am feeling well despite the fact that I have [metastases]. So, why not use my time and energy in a helpful and benevolent way? Last June, my sister Martine, who had been my great cheerleader, passed away very quickly after being diagnosed with metasticized pancreatic cancer. She refused to give up hope and continued to make plans for the future. Martine's courage has given me a new life force!"

How many LMS survivors does it take to put on a fundraiser? At least one more: Jean Walton of Bedford also has volunteered. She, too, is in treatment for metastatic disease. She and I were connected in 2009 through the M.D. Anderson Network. (The Sarcoma Alliance also offers a Peer-to-Peer Network.) After many conversations on the phone, I look forward to meeting her!

For a silent auction, Jean is dona-ting jewelry and beautiful vintage clothes.

"Instead of lamenting about my future, contributing to the Sarcoma Alliance fundraiser makes me feel as if I’m giving back for all the support I have received on this cancer journey," she says. "The Sarcoma Alliance online support group and reliable information has made it easy to stay connected when I have been on chemotherapy. Sarcoma is rare and the fact that the Sarcoma Alliance offers financial assistance so that people can seek a second opinion from a sarcoma expert may be life-saving for that person.

"Giving back makes me feel more like a survivor!"

The church is located at 4015 Normandy Avenue. Tickets are $30; add $10 if you want two tickets for beer or wine. To pay by PayPal or credit card, enter the amount here. Keep clicking and you should get a comment section. Type “Dallas.” Checks also can be made out to the Sarcoma Alliance, with “Dallas” in the note section, and given to one of the organizers or mailed to Sarcoma Alliance, 775 East Blithedale #334, Mill Valley, CA 94941.

Sarcoma survivors can attend for free or donate whatever they can afford. We want to meet you!

If you would like to help us, or you have something for our auction, please email me at suziesiegel at

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.

Thursday, April 19, 2012

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.

Friday, April 6, 2012

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.

Thursday, March 15, 2012

Austin fundraiser March 22-23

By Suzie Siegel
Artist Mark Goad and Rio’s Brazilian CafĂ© 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.

Monday, March 5, 2012

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 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.

Saturday, March 3, 2012

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.

Thursday, March 1, 2012

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.

Friday, February 24, 2012

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.

Sunday, February 5, 2012

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.

Tuesday, January 10, 2012

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.