Thursday, September 11, 2008

International Sarcoma Patient Advocate Network


The International Sarcoma Patient Advocate Network (iSPAN) held its second meeting on October 31, 2007 prior to the annual meeting of the Connective Tissue Oncology Society annual meeting in Seattle, Washington. iSPAN is open to all patient advocacy organizations and committed individuals with the goal of fostering communication and collaboration to improve the lives of those diagnosed with sarcoma. iSPAN serves as a common voice to support sarcoma patient advocacy, legislation and research. This year over 20 individuals met
representing over a dozen organizations. Additionally, the meeting was generously supported by CTOS and by Novartis Pharmaceuticals, Inc.

The meeting began with a brief presentation from Arthur Beckert summarizing the history of iSPAN and the goals the meeting. One tangible outcome of the first meeting of iSPAN was the first comprehensive directory of sarcoma organizations. He hoped that advocacy groups would agree that many issues could be better addressed if sarcoma advocacy groups would work together. These include raising awareness, assuring that all sarcoma patients receive the best care in the most appropriate setting, increased funding for research,
giving more flexibility for drug research and approval for rare diseases, tissue banking, and patient registry.


Chappie Conrad, MD an orthopaedic surgeon at the Seattle Cancer Care Alliance and founder of the Northwest Sarcoma Foundation welcomed the group. He complemented everyone’s efforts and believes that it is very important for the provider community to support and work closely with patient advocates. Although there have been improvements in sarcoma care, he believes that the grading system needs to improve and there needs to be new and better drugs.

Raising Sarcoma Awareness

The group next talked about raising awareness about sarcoma in general and about the unique needs of sarcoma patients. Currently there are a number of sarcoma awareness events in the US, mostly in June and July. One step in raising awareness would be for the sarcoma community to agree on a common time for awareness events. Bruce Shriver of the Liddy Shriver Sarcoma Initiative gave a presentation about Team Sarcoma in July and the incredible growth this has had during the past few years.

The group agreed that designating July as Sarcoma Awareness Month would give everyone a long period of time to put together events to bring attention to sarcoma. Everyone agreed that there was no pressure or need for any organization to modify their existing calendar. However it is hoped that organizations would organize events and activities that would generate local, regional or national press coverage. These events could be coordinated with existing activities such as Team Sarcoma or could be held on their own. Events could include walks, runs, picnics, educational session at hospitals, and even include governmental proclamations of July of Sarcoma Awareness Month.

ARIAD – Upcoming Phase III Trial of Deformlimus

Camille Bedrosian, MD of ARIAD next gave a presentation on the upcoming Phase III trials of Deforolimus (formally AP23573). The trial will be open to those with metastatic soft tissue and bone sarcomas. Deforolimus is an mTOR inhibitor that affects cell growth, division, metabolism and angiogenesis. By blocking mTOR the cancer cells will starve and die. ARIAD recently received FDA approval for the Phase III study design and is starting to centers through out the world to conduct the clinical trial. They hope to enroll 650 patients
at 125 sites. More information can be found at

Advocacy Initiatives

Mark Thornton, MD next gave an overview of the Sarcoma Foundation of America and it efforts to improve the FDA’s drug approval process for rare diseases. SFA along with the Alliance Against Alveolar Soft Part Sarcoma has petitioned the FDA to modify its drug approval process for rare diseases. This “Citizen’s Petition” can be approved through an administrative process and does not need changes in current regulations or law. Briefly this petition outlines a streamlined process for testing and approval for new agents for rare cancers. (Please contact the Sarcoma Alliance if you would like more information about this initiative)

Estelle Lecointe, AFPS, Ensemble contre le GIST gave a presentation on activities of the GIST community in France. The most important is their support of two studies.

What’s Next?

Everyone agreed that it is important that the advocacy community work together on the many issues of common interest. It is equally important that iSPAN serves as a vehicle of support for the sarcoma community so that every organization can continue to grow and prosper, retain their independence and stay true to their mission.

Mission Statement - March 2008

iSPAN is compromised of individuals and organizations from around the globe that desire to work together to improve communication, share information and address legislative and regulatory matters affecting sarcoma patients, medical professionals, and researchers. iSPAN members complement and benefit each other through shared communication and networking. In return, iSPAN serves as a common voice for sarcoma advocacy utilizing our strengths and diversity.

Gynecological Oncologists Welcome Sarcoma Advocacy

Gynecologic oncogists welcomed the Sarcoma Alliance to their 39th Annual Meeting in March in Tampa. For the first time, the Sarcoma Alliance had a table in the exhibit hall, and our organization and its mission were listed in material distributed by the Society of Gynecologic Oncologists (

During the conference I was able to talk with many physicians about sarcoma and the advocacy community. A prominent gyn oncologist thought uterine leiomyosarcoma (ULMS) was completely different from LMS outside of the gynecologic area. He had never heard of sarcoma departments at cancer centers, nor did he know about SARC (Sarcoma Alliance for Research through Collaboration at He saw no point in a gyn onc talking to a medical oncologist in a sarcoma department. Another gyn onc who doesn’t do chemotherapy had never heard of the c-kit mutation or Gleevec. One doctor was reluctant to take a pamphlet, saying there’s little that can be done for ULMS. A few others expressed sadness, and perhaps futility.

But many others took an assertive stance to sarcoma, and welcomed pamphlets, pins, pens and wristbands. A few put on ribbons or wristbands right then. A common comment was: “I’ve got a patient who will be really interested in this!” A Brooklyn doctor loaded up on merchandise, saying LMS is so prevalent in the New York City area that someone should do a study. A doctor from West Virginia said the same. I assured doctors from outside the United States that their patients could use our services if they read English and have access to the internet.

Coding for insurance reimbursement continues to be an issue. Some health-care professionals code sarcoma by the site of origin, instead of using codes for “soft-tissue sarcoma.” This can result in the denial of treatment. Another issue is aromatase inhibitors for LMS patients. Some doctors prescribe these drugs, while others await further study.

Some of the gyn oncs research sarcoma. Although the meeting’s agenda listed no discussions of sarcoma, at least 14 posters mentioned it. Following is a summary of these studies.

Radiographic Studies

Doctors at Columbia University Medical Center in New York concluded that the cost of CT scans didn’t justify their use before surgery for uterine cancers, except in high-risk cases such as sarcomas. Doctors who saw a CT before surgery were more likely to handle a patient differently if she had a uterine sarcoma. An issue for patients is that doctors may not know a tumor is a sarcoma before surgery.

Korean doctors at the Asan Medical Center in Seoul studied uterine sarcoma. “PET or PET/CT was highly effective in discriminating true recurrence in patients with suspected recurrence and was highly sensitive in detecting recurrence in asymptomatic patients.”

Predicting Outcomes

A University of Miami study found ethnicity has little value in predicting stage, grade, histology, recurrence or survival of women with uterine sarcoma.

Doctors at Stanford and the UCSF, and UC-Irvine analyzed 831 cases of endometrial stromal sarcoma. Removing or preserving ovaries did not affect survival, nor did adjuvant radiation therapy. The poster also noted: “The excellent survival in patients with grade 1 and 2 disease of all stages supports the concept that these tumors are significantly different from grade 3 tumors.”

At Baylor College of Medicine and the M.D. Anderson Cancer Center, both in Houston, doctors examined
uterine smooth-muscle tumors of uncertain malignant potential, called STUMP. They found that recurrence was more likely in younger women, and they urged more research on menopause status and the use of hormones.

Another Baylor study found that removing ovaries did not affect the survival of young women with stage 1 ULMS. It suggested surgeons leave ovaries alone if they look normal.

A ULMS study at Stanford and UCSF found metastases in the lymph nodes of 6.6 percent of the patients who had their lymph nodes removed, and those patients didn’t live as long. Removing ovaries didn’t appear to affect patients’ survival.

UC-Irvine did a 20-year review of ULMS patients and found that they were less likely to have a pelvic recurrence if they had radiation after surgery. Patients who got radiation also were a little more likely to make it to the 5-year mark, but overall, they didn’t live any longer than women who didn’t get radiation. Patients who got Gemzar plus Taxotere lived longer than those who got other forms of chemo.

This last poster underscores the need to update the uterine sarcoma pages on the Women’s Cancer Network (, which were last updated in the fall of 2006. They still mention only two chemo drugs for LMS: Adriamycin and Temodar. The site was created by the Gynecologic Cancer Foundation (, which is affiliated with the SGO. The GCF also
published the 2007 State of the State of Gynecologic Cancers. The report is geared toward initial treatment. Reading the report, a patient might not realize she needs routine imaging to check for recurrences, and if the
disease does recur, she might benefit from chemo or more surgery.

As is true for many cancer publications, “cancer” often refers only to carcinoma in the GCF report. A woman like me, with a gyn cancer in a site other than the uterus, might be confused by the list of causes, treatments, etc.

For more information on gyn sarcomas, please see my 2006 articles at:

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