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By Suzie Siegel
LMS survivors are working with other sarcoma advocates on common goals, through the international Sarcoma Patient Advocate Network.
Sharon Anderson, who assists LMSdr, helped organize iSPAN in 2005. It held its first meeting that winter at the Connective Tissue Oncology Society conference in Boca Raton, Fla.
About 20 people from the United States and Europe attended the second iSPAN meeting Oct. 31, 2007, at the Fairmont Olympic Hotel in Seattle, Wash. The meeting preceded the CTOS conference, which attracted sarcoma doctors from around the world.
Leaders of the Sarcoma Foundation of America the Sarcoma Alliance and the Northwest Sarcoma Foundation volunteered to work on a mission statement, an organizational structure and some initial activities for iSPAN. One such initiative would be designating July as Sarcoma Awareness Month.
Those in attendance with a special interest in LMS included Lora Bennett, Oregon chapter leader for the Sarcoma Foundation of America; Dave Murphy, a Sarcoma Alliance board member; and me, who was there as a representative advocate to report back to LMSarcoma Direct Research Foundation.
The Sarcoma Alliance (www.sarcomaalliance.org) prepared a directory of nonprofit sarcoma organizations, including LMSdr. Dr. Ernest “Chappie” Conrad, a CTOS board member, said he would ask the CTOS staff to distribute copies to all members.
In the past, LMS advocates have asked CTOS to make its membership public so that patients could find a sarcoma doctor more easily. Dr. Conrad said he would take that request back to the CTOS board.
In the meantime, the Sarcoma Alliance for Research through Collaboration (SARC) has made its membership public. http://www.sarctrials.com/public/pag22.aspx (SARC is different from the Sarcoma Alliance, an advocacy group.)
Sharon Anderson had made flags to represent different subtypes of sarcoma, including LMS, and they decorated the iSPAN meeting room.
“I love your subtype flags,” said Dr. Conrad, an orthopedic surgeon who heads the sarcoma service at the University of Washington Medical Center. “We’re just beginning to understand the molecular genetics of subtypes.”
Although their development may take a decade, he said, he looks forward to treatments that target specific genetic profiles. Having a bank of sarcoma tissues is critical to developing targeted therapies, he added.
Samples from primary tumors are not enough. Researchers need to study the biology of metastases, which can differ from primary tumors, he told iSPAN.
At the CTOS conference, Lee Helman encouraged more studies on subtypes. “Until we start looking at individual diseases, we’ll be having the same talk at CTOS 20 years from now,” said Dr. Helman, scientific director for clinical research at the National Cancer Institute in Bethesda, Md.
Dr. Chibon Frederic of the Institut Bergonie in Bordeaux, France, presented a paper on the “molecular classification of sarcomas with complex genetics.” He said LMS that arises in an extremity differs from that which arises in the trunk. Doctors may need to consider these two different types of LMS when doing clinical trials, he said.
Dr. Robert Benjamin, chair of sarcoma medical oncology at the M.D. Anderson Cancer Center in Houston, commented that uterine LMS (or ULMS) is “distinctly different” from other LMS.
With partners in Sweden and Denmark, Dr. Keith Skubitz of the University of Minnesota in Minneapolis analyzed gene expression patterns in high-grade soft-tissue sarcoma. Someday, he said, doctors may use such profiling to figure out which patients will do better with which treatments. He noted that differences within subtypes, such as LMS, make it difficult to treat patients. These differences also make him wonder if it makes sense to use control groups in clinical trials.
It is harder to do clinical trials on sarcoma than more common cancers. Nevertheless, the FDA, other government entities and insurers generally expect the same level of proof for a drug used to treat sarcoma. This means it may take much longer to compile enough evidence for approval. Very few drugs have been approved for sarcoma. Some doctors try drugs approved for other cancers, but insurance may not pay.
For example, Dr. Benjamin has argued that Medicare should consider Gemzar/Taxotere (gemcitabine/docetaxel) as a standard chemotherapy for metastatic sarcoma. Nevertheless, Medicare refuses to pay for Gem/Tax in Texas, although it does pay in other states.
Dr. Mark Thornton, president of the Sarcoma Foundation of America (www.curesarcoma.org), wants to streamline the U.S. regulatory process for the approval of sarcoma drugs. SFA has petitioned the FDA to draw up a new template for the approval of drugs for rare cancers. He said he would write a letter and send it to iSPAN so that members can write the FDA and Congress.
In a similar vein, he said he is working with the American Society of Clinical Oncologists on a project called “No Cancer Patient Left Behind.”
The Iraq war has been so expensive that cancer research, especially in sarcoma, has been hard hit, Dr. Conrad said. Dr. Benjamin echoed that sentiment, saying: “Sarcoma paid a greater price.”
Dr. Benjamin said he appreciates advocates who write letters supporting funding, but he wishes they could raise money for clinical trials.
Clinical trials were discussed in CTOS, including two kinase-inhibitors, pazopanib and perifosine, that have shown some benefit to LMS patients. Doctors also showed interest in anti-angiogenic drugs such as Sutent (sunitinib) and sorafenib.
A poster from Dr. Sant Chawla at the Sarcoma Oncology Center of Santa Monica, Calif., concluded that the cytotoxic drug trabectidin (Yondelis or ET-743) could help patients with metastatic disease, with manageable side effects.
Chemotherapy remained a hot topic in CTOS. Some researchers have looked at case histories to see if patients who got chemo lived longer. One doctor said there might be a greater statistical advantage for chemo if researchers looked at patients with the worst prognostic factors, such as high grade and vascular invasion. In other words, giving chemo to patients who have a better chance of being cured by surgery makes less sense -- and it lessens the statistical advantage. It would be better to look at the benefit of giving chemo to people who are more likely to see their sarcoma spread.
No matter what the advantage is on average, some individuals do seem to benefit from chemo, said Dr. Laurence Baker of the University of Michigan. He also pointed out that it’s difficult when a number of sarcoma subtypes are lumped into the same study.
Dr. Helman noted that chemo increases the likelihood of survival for breast-cancer patients by an even smaller percentage than for sarcoma patients, and yet, chemo is a standard option for breast cancer.
“There seems to be a disconnect,” he said, in regard to chemo for sarcoma patients.
Some doctors wondered if chemo is more effective early on. That idea is reflected in a clinical trial that gives adjuvant chemo to ULMS patients soon after their surgeries.
Dr. Robert Maki of the Memorial Sloan-Kettering Cancer Center in New York reported on a phase II clinical trial for high-risk ULMS. Patients get four cycles of Gemzar/Taxotere and four cycles of Adriamycin (doxorubicin.) Patients who can’t tolerate Gem/Tax can still do Adriamycin, he said. So far, he said, no one has had a recurrence.
Doctors are considering a phase III trial to compare patients who get chemo to those who don’t. They also might add pelvic radiation or open up the trial to people with LMS in other parts of their bodies.
Dr. Peter Hohenberger from University Hospital Mannheim in Germany said doctors should consider aromatase inhibitors (AI) if patients have a recurrence and their LMS was receptive to estrogen or progesterone.
In a separate interview, Dr. Ian Judson, president of CTOS for 2007, said doctors have some good data on the effectiveness of hormone therapy for endometrial stromal sarcoma (ESS), but not for LMS.
“Just because it is receptive doesn’t mean it is dependent” on hormones, said Dr. Judson, of the Royal Marsden Hospital in London. The most important part of the debate has been getting women with LMS to stop taking hormone-replacement therapy, he said. One woman got several years of remission just by stopping HRT.
(For more on this debate, see http://liddyshriversarcomainitiative.org/Newsletters/V04N03/ctos_q_cp.htm)
Doctors in gynecologic oncology as well as sarcoma treat women with gyn LMS. At the iSPAN meeting, Dr. Conrad said gyn oncologists are the only surgeons who also supervise chemotherapy. He said he would welcome more collaboration between gyn oncs and oncologists who focus on sarcoma, but these relationships are “very politically and academically challenging.” Different departments and disciplines have different rules and budgets. But collaboration benefits patients, he said, because the gyn oncs “are pretty much disconnected from the sarcoma world.”
One exception is Dr. Matthew Anderson of Baylor College of Medicine in Houston, one of the few gyn oncologists to ever attend a CTOS conference. He researches ULMS.
Gynecologic oncologists write treatment guidelines for uterine sarcomas for the National Comprehensive Cancer Network, while doctors in sarcoma programs write the guidelines for other kinds of sarcoma. LMS advocates have questioned this. In 2005, Dr. Benjamin said sarcoma doctors would take over the writing of the guidelines for uterine sarcomas. At the 2007 conference, Dr. Baker, who is president of SARC, said Dr. George Demetri of the Dana-Farber Cancer Institute in Boston is working on new guidelines for uterine sarcoma, with help from colleagues in sarcoma. Meanwhile, gyn oncologists wrote the 2008 guidelines for uterine sarcoma.
These guidelines are for professionals. For some types of cancer, the NCCN also publishes patient guides, in which the medical language is "translated" into English that regular people can understand. Denise Reinke, a nurse practitioner at U Michigan and vice president of SARC, said SARC is working on patient guidelines for sarcoma, but it will not include uterine sarcomas for now.
For more information on the SARC and CTOS presentations, go to:
http://www.sarctrials.com/upload/Broadcast16.pdf
http://www.ctos.org/meeting/2007/07mtgProgram.pdf
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