What does hope mean to you?

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

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

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

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

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

For me, hope is part of my whole life.

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

-- Suzie Siegel

Gene Mutation Linked to Aggressive Childhood Cancer

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

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

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

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

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

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

A beautiful board

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

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

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

-- Suzie

Lucky 13

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

-- Suzie

Lanakila women heading to Hawaii

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

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

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

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

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

Gynecologic Cancer Awareness Month

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

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

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

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

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

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

More paddling for sarcoma Saturday

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

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

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

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

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

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

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

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

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

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

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

Photos from O2H

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

Remembrance & inspiration

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

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

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

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

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

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

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

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

Raffle for a brand-new paddleboard

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

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

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

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

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

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

Ocean of Hope Aug. 30

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

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

-- Suzie

ACS recognizes us

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

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

-- Suzie Siegel

Resale therapy

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

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

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

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

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

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

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

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

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

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

This is Sarcoma Awareness Month

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

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

-- Suzie Siegel

GlaxoSmithKline Recruiting for Clinical Trial

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