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 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

Gem, tax, dox and trabectedin for LMS

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

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

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

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

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

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

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

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

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

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

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

Putting the "sun" in the sunflower

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

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

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

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

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

With help from our friends

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

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

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

-- Suzie Siegel

Adjuvant chemo

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

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

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

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

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

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

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

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

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

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

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

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

-- Suzie Siegel

Different NCCN standards

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

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

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

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

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

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

      -- Suzie Siegel

SARC creating unified database

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

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

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

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

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

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

Women under-represented in clinical trials

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sarcoma & women's oncology

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

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

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

             -- Suzie Siegel

Spirit of Survival West 2009

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

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

Learn More

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

Sarcoma Alliance Attends Oncology Annual Meetings

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

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

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

Arthur Beckert, Executive Director

Miles for Moffitt

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

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

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

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

 

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

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

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

Suzie Siegel

We go worldwide

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

Don't forget your teeth

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

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

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

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

      -- Suzie Siegel

Ocean of Hope Campaign begins with the Catalina Relay

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

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

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

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

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

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

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

Talk to you soon,

Aimee

ProSolutions Software Partners with the Sarcoma Alliance

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

Letter to the National Cancer Institute

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

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

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

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

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

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

Joan Darling, Ph.D.
Sarcoma Alliance Board President

IDM Receives Approval in Europe for Osteosarcoma Drug

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

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

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

Celebrating Our 10th Anniversary

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

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

Arthur Beckert,
Executive Director

We got the 'hell' out!

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

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

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

Made Me Nuclear

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

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

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

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

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

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

Dave Murphy
Sarcoma Alliance Board Member

Medicare reform

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

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

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

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

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

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

-- Suzie Siegel