Dogs help fight sarcoma in humans

By Suzie Siegel

Dr. Stephen Withrow

By treating dogs with cancer, veterinarians gain important insights into improving treatments for humans.

This has special significance for people with sarcoma because "sarcoma is five times more common in dogs than humans," said Stephen Withrow, DVM, professor of surgical oncology at Colorado State University in Fort Collins and the founding director of its Flint Animal Cancer Center, the largest such center in the world.

The many sarcoma subtypes diagnosed in people are well represented in dogs, said Christina Mazcko, a biologist who manages the National Cancer Institute's Comparative Oncology Program. The subtypes include osteosarcoma, chondrosarcoma, synovial sarcoma, leiomyosarcoma, gastrointestinal stromal tumor (GIST), hemangiosarcoma (angiosarcoma) and other soft-tissue sarcomas.

Dr. Withrow is the only veterinarian admitted as a member of the Musculoskeletal Tumor Society. The surgeon also belongs to the Children’s Oncology Group. He's proud that he has served as a resource for surgeons who operate on humans.

"Physicians are not always aware of what's happening in animal studies, but some have realized we see more sarcoma cases than they do."

Colorado State's veterinary school is one of 20 across the United States and Canada that work with the NCI in the Comparative Oncology Trial Consortium, said Dr. Withrow, past president of the Veterinary Cancer Society.

"We can do so much more together than we can as single institutions."

Nine clinical trials have been completed, and two are underway. More than 150 pet owners have participated, and board-certified veterinary oncologists supervise the dogs' care. What veterinarians learn is then integrated into studies of cancer biology and therapy in humans, Mazcko said.

"Along the way, the dog has helped with imaging; the safety and efficacy of chemo delivery; radiation dose responses; and giving chemo in arteries," Dr. Withrow said. 

Treating dogs with cancer also has been useful in discovering what doesn't work or doesn't work as well as hoped, he said. "We proved hyperthermia had only mild improvement in local control.

"Fighting sarcoma is like slogging through mud. It's not a sprint. There are no home-runs but we've made progress.

"A major breakthrough in osteosarcoma was MTP-PE [mifamurtide], an immunotherapy popularized by a vet." Half of the dogs who received it benefited, but when it was tested in humans, only 15 percent got a response. "The drug was sold to a company in Europe, and it's no longer available in the U.S." He calls the stalemate between pharmaceutical companies and the FDA "sick."

"For pharmaceutical companies, the target is humans, where they can charge these inordinate prices." In general, people won't pay as much to treat their dogs. Plus, companies fear that, if they test their drugs in dogs first and side effects occur, the companies will have a harder time getting approval for clinical trials for humans.  

Clinical trials for dogs cost less money and give quicker results than those in humans, Dr. Withrow said. "It's money well spent."      

"Of the estimated 72 million dogs in the United States, up to 1 million are diagnosed with cancer each year," Mazcko said. Mice are commonly used to study cancer, and they are inbred to develop tumors. They are injected with cancer cells grown in the lab. In contrast, veterinarians are studying cancers that occur naturally in dogs and that "are very similar to those seen in human patients."

The strong genetic similarity has been demonstrated by the recent completion of the canine genome (the entire set of genetic material in dogs) and the increasing availability of biological and genomic reagents (substances used in a chemical reaction to analyze other substances), she said.

Like people, dogs experience recurrence, resistance and metastasis, she said. Dogs and humans are exposed to similar environmental risks. Dogs are large enough that their imaging studies can be compared to those of humans, and dogs can often tolerate multiple forms of treatment, such as chemotherapy and radiation.

When their cancers have not grown much or spread far, dogs can get experimental treatments not yet approved for humans -- even though the new drugs may be less harsh than conventional chemotherapy, she said. 

"Although the treatment options and approaches are comparable in dogs and humans, there is no requirement to pursue standard treatments as a first-line option for dogs."

This gives researchers a chance to answer questions about the drugs that could not be answered in conventional mouse studies or human clinical trials, Mazcko said.

In the 1970s, veterinarians had only crude treatments for animals with cancer, Dr Withrow said. In the next decade, vets began using imaging studies and treatments also used on humans.

In the mid-1980s, Colorado State partnered with the veterinary school at North Carolina State University and biostatisticians at Duke's cancer center. The National Cancer Institute awarded them a prestigious program-project grant to do clinical trials, and the funding continued for about 15 years, he said.

This partnership pioneered the idea that clinical trials in veterinary medicine would provide better information for cancer treatment in humans than mouse models, he said.

Dr. Chand Khanna

"It really was Khanna's brain child," he said, referring to Chand Khanna, DVM, PhD, now director of the Comparative Oncology Program, which the NCI's Center for Cancer Research created in 2003. He also heads the Tumor and Metastasis Biology Section of the NCI's Pediatric Oncology Branch. "Fortunately, his boss was Lee Helman," who supported his work. 

About 10 years ago, federal grant money started drying up, and the vets doing the research had to look for money from  pharmaceutical companies, others health-care companies, foundations and nonprofits. It was a terrible blow, Dr. Withrow said.

"The Comparative Oncology Trial Consortium is limited only by funding. Great science is all around us."

Information on COTC clinical trials is available at: https://ccrod.cancer.gov/confluence/display/CCRCOPWeb/Home.

Making sense of the palifosfamide failure

By Suzie Siegel

Sarcoma specialists mourn the loss of palifosfamide, a promising new drug that could have improved the quality of life for their patients.

Dr. Gina D'Amato

"It is such a shame that a great drug will not be approved," said Alliance board member Gina D'Amato, MD, a sarcoma medical oncologist at Georgia Cancer Specialists in Atlanta.

Ziopharm has reported that palifosfamide in combination with doxorubicin didn't show any significant difference from doxorubicin alone in a phase 3 clinical trial called PICASSO. Because FDA approval now appears impossible, the company has said it will no longer study its drug in sarcoma patients.

Dr. Charles Forscher

Soft-tissue sarcoma patients have gotten the chemotherapy drug ifosfamide for years, often combined with doxorubicin (also known by its brand name Adriamycin). Palifosfamide was developed to be as effective as ifosfamide, but not as toxic. 

In the randomized PICASSO trial, doctors didn't know if they were giving patients palifosfamide or a placebo, said Charles Forscher, MD, medical director of Cedars-Sinai Medical Center's sarcoma program in Los Angeles.

Dr. Scott Schuetze

Sometimes side effects give clues as to which patients are getting which drugs. But palifosfamide caused so few side effects that doctors couldn't tell which patients got that drug and which got saline injections, said Scott Schuetze, MD, PhD, Director of the Connective Tissue Oncology Program and medical director of the Clinical Trials Office of the University of Michigan Comprehensive Cancer Center in Ann Arbor.  

He and other sarcoma oncologists say they await the full study results.

Dr. Robin Jones

"The provisional results ... add to the evidence that doxorubicin alone could be considered standard systemic treatment for metastatic soft tissue sarcoma," said Robin Jones, MD, who directs the Gilman Sarcoma Research Program at the Fred Hutchinson Cancer Research Center in Seattle.

Last year, he said, a "European trial of doxorubicin versus doxorubicin and ifosfamide showed NO significant difference in overall survival. However, the combination of doxorubicin and ifosfamide had significantly longer progression-free survival and higher response rate compared to doxorubicin alone."

Dr. Robert Maki

Robert Maki, MD, PhD, medical director of the sarcoma program at Mount Sinai Medical Center in New York City, said an earlier,  smaller study of palifosfamide + doxorubicin showed a clear benefit, and the larger PICASSO trial was expected to do the same.

"With the failure of palifosfamide in this study, we continue to have no other option than to use ifosfamide, which causes significant side effects affecting the brain, kidney, bladder, and bone marrow," Dr. Maki said. "These side effects of ifosfamide appear to be worse in people over age 60."

Dr. D'Amato said: "This study was designed to show that doxorubicin + palifosfamide would improve the PFS [progression-free survival] by three months compared to doxorubicin. This is very difficult to do. Of course, hindsight is 20/20. They probably should have compared doxorubicin + ifosfamide vs. doxorubicin + palifosfamide and the endpoint should have been noninferiority, tolerability, Quality of Life (QoL). However, I suspect that the FDA encouraged the company to do the trial as the current design and not the latter."

"An even more ambitious design could have involved three randomized arms: doxorubicin + ifosfamide vs  doxorubicin + palifosfamide vs doxorubicin," Dr. Jones said.

It also should have focused on subtypes of sarcoma that had shown response in previous studies, he said.

Another alkylating agent like ifosfamide, TH-302 (glufosfamide), is in clinical trials now, and it also is less toxic than ifosfamide, Dr. Maki said.

"The trial is still enrolling patients," said Dr. D'Amato, "so it will take some time before we have any answers as to whether TH-302 has a chance to be approved."

"We can still hold out hope for TH-302," Dr. Jones added.

Hugo Chavez and rhabdomyosarcoma

By Joan Darling and Suzie Siegel

Venezuelan President Hugo Chavez may have been the most famous and most powerful person to ever have rhabdomyosarcoma.

If the disease was indeed rhabdomyosarcoma, it was very unfortunate that he chose not to make this fact public. Regardless of what one might think of his politics, Chavez was a prominent and influential figure, and his openness could have resulted in publicizing the plight of thousands of current and future rhabdomyosarcoma sufferers, especially older adults for whom there is practically no effective treatment.

Publicity brings awareness, and awareness brings demands for more and better treatments. By announcing the type of cancer he had, the family of Chavez, so proud of bringing political change to their own country, could have a positive impact on the lives of people throughout the world.

Before his death March 5, Chavez had undergone treatment for cancer in his pelvis for two years. He never specified what kind of cancer he had, but there was widespread speculation that he had soft-tissue sarcoma, specifically rhabdomyosarcoma, as journalist Dan Rather reported last year. After his death, Reuters and other news agencies said the sarcoma began in his psoas muscle.

Chavez and his vice president suggested his enemies might have injected him with cancer. But a healthy person's immune system would fight off such an injection.

Rhabdomyosarcoma is a rare cancer of the voluntary, or striated, muscles. About 350 children, adolescents and young adults are diagnosed with it each year in the United States, along with a small number of older adults.

Children and teenagers are treated extremely aggressively to beat what is an extremely aggressive cancer. They typically receive numerous rounds of multi-agent chemotherapy and radiation, as well as surgery, if feasible. Side effects of treatment can be debilitating and are often life-threatening.

If the cancer hasn't spread by the time they are diagnosed, young people have about a 70 percent chance of surviving. In contrast, older adults have less than a 5 percent survival rate.

Adults often have a different subtype of rhabdomyosarcoma that appears less responsive to treatment. Also, the oncologists who treat adults are not as familiar with this disease or the latest treatments as are the pediatric oncologists who treat children. Finally, just by being older, adults may not be able to withstand the rigors of the extended and intense treatment, which can take more than a year to complete.

Given political expediency, it is not surprising that a diagnosis of rhabdomyosarcoma would be hushed up, particularly as Chavez was up for re-election in 2012. It would have been very discouraging for his supportive constituency, and likely devastating to his political allies, to find out that he was facing an extremely bleak future.

Up with patient services, down with doping

By Suzie Siegel

Some people affected by sarcoma have heard of the Livestrong Foundation but not the Sarcoma Alliance, even though our missions are similar.

Meanwhile, many survivors have followed the Lance Armstrong coverage, not realizing they took legal forms of EPO.

Armstrong has admitted blood doping, including the use of erythropoietin, commonly called EPO. The hormone regulates the production of red-blood cells. Erythropoiesis-stimulating agents, or ESAs, increase red-blood cells, which deliver more oxygen to muscles, increasing endurance. These drugs are sold legally under the trade names of Epogen, Aranesp and Procrit.

“We used to give it all the time," said sarcoma specialist Gina D’Amato, M.D., a board member of the Sarcoma Alliance. Like me, many patients got shots when our red-blood count fell too low for us to continue on chemo. "Its use expanded until studies found that continuing to give it once blood levels were normal can cause serious complications.”

ESAs remain useful for various conditions, such as anemia in patients with kidney disease, she said.

The FDA black-boxed the drugs in November 2007. The information warns that they have “not been shown to improve quality of life, fatigue, or patient well-being.” Instead, the FDA said, they increase the risk of death, stroke, blood clots, heart attacks and the progression or recurrence of tumors. The drugs “shortened overall survival and/or increased the risk of tumor progression or recurrence in clinical studies of patients with breast, non-small cell lung, head and neck, lymphoid, and cervical cancers,” the FDA said.

The same is presumed to be true in sarcoma patients, said D’Amato, who sees patients at Georgia Cancer Specialists in Atlanta. Because of the risk, oncologists are warned to give the drugs only to patients with metastatic disease who cannot be cured by chemotherapy, not to those getting chemo in hopes of being cured.

“There’s a theory that sarcomas have erythropoietin growth-factor receptors,” and thus, it’s possible that an ESA could stimulate slow-growing tumors, she said. A triathlete, she said she would never dope, of course. “It’s a shame that there’s so much pressure on athletes in professional competitions.”

In endurance sports, "it's bad to push your hemoglobin higher for the tiny advantage it will give you," said Ellis J. Neufeld, M.D., Ph.D., associate chief of the division of Hematology/Oncology at Boston Children's Hospital, a teaching hospital of Harvard Medical School. "It is clearly dangerous."

Armstrong stepped down from the board of Livestrong last year, and the Lance Armstrong Foundation changed its official name to the Livestrong Foundation. 

People who think Livestrong raises money for research are mistaken. Like the Alliance, Livestrong advocates for research, but doesn't fund it. Instead, both nonprofits focus on patient services and awareness.

In the fight against cancer, the vast majority of money goes toward basic science research, said Doug Ulman, (right) president and CEO of Livestrong in Austin. Ulman, who survived chondrosarcoma and melanoma, responded to email questions last August.

“While research is absolutely important, the needs of patients and families today are also critical,” he said. "Even with better treatments being developed, individuals and families will still endure the diagnosis, treatment (hopefully successful) and post-treatment survivorship. There will always be a need for survivorship services.

“I think that historically patient services have not been viewed on the same level as other medical services. They have been seen as add-ons or nice-to-haves rather than critical to a patient's survival, well-being and quality of life. That is changing, and we must continue to prove the impact of these services, and the value that patients and survivors place on them.”

Armstrong founded Livestrong in 1997, around the time that Wendy Sommers started giving information and support to other sarcoma patients. She answered emails and telephone calls from around the world, said Alliance board member Kevin Plottner of Alameda, Calif., who was her husband and designed the Alliance’s first website.

She became friends with another sarcoma patient, Suzanne Leider, who had the same doctor. After Wendy died in 1999, Suzanne founded the Alliance in her home in Mill Valley, Calif.

“You are not alone” is our motto, and our mission is guidance, education and support. Like Livestrong, we help people navigate the health-care system. Livestrong refers people to a nonprofit that provides peer-to-peer support. We run a similar program. We  help people get insurance reimbursement, access good treatment, and find clinical trials. We have various ways to connect people with one another so that they can give emotional support, with resources for children and young adults. We also give grants to help reimburse people who get second opinions.

The enormous Livestrong offers help to all cancer patients, while the Alliance is much smaller, reflecting the rarity of sarcoma. To illustrate our difference in size: Ulman's salary is higher than our annual budget.

But that doesn't mean we're insignificant. The National Cancer Institute has a list of "National Organizations that Offer Cancer-Related Support Services." Search it for "sarcoma" and the Alliance will pop up. The same goes for the American Cancer Society and Cancer.net, the patient-focused site for the American Society of Clinical Oncology.

Livestrong.org doesn't link to us. A search for "sarcoma" will yield stories of survivors. (We also offer stories of survivors, as well as those who have died but whose lives still can inspire and teach us.)

Livestrong.org partners with Livestrong.com, a for-profit website on diet, exercise and other lifestyle issues. If you search the site for "sarcoma," you will get links that people have paid to appear first. Next comes an article that talks about a sarcoma diet and "sarcoma-friendly foods."

No link has been established between diet and sarcoma, as we explain on our nutrition page. (As part of lifestyle issues, we also have pages on exercise and sexuality.)

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.

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 http://www.ctos.org/. The page also has searchable abstracts.

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 http://www.active.com/donate/outriggerO2H2012/aimeespector. For the other paddleboarders, visit http://www.active.com/donate/oceanofhope2012.

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: http://www.active.com/donate/oceanofhope2012

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."

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: www.23andme.com/sarcoma

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.

    

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 tampabay.rr.com.

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.