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