Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear ASPS Community Friends,
Because of Brittany's recent devastating aggressive and extensive disease progression, her radiation oncologist is urging us to have her undergo a currently available systemic chemotherapy treatment instead of waiting for her to meet the ARQ-197 C-met Inhibitor Clinical Trial eligibility requirements which include three months of proven brain met and central nervous system met stability. He is advocating the use of Temodar because it is one of the few chemo treatments that can cross the blood brain barriar, but we are extremely reluctant to subject Brittany to this treatment which has shown only a 10% success rate with other kinds of cancer, and for which no results data is available for ASPS patients. According to our research, Temodar has very negative side effects including weakening the immune system, permanent infertility, hair loss, nausea and vomiting, and possible death. We would deeply appreciate it if any one on this Web site who has had any experience with Temodar, or who knows of any ASPS patients who have been treated with it, could please contact me (BonniHess@aol.com), or provide the information on this Forum. Thank you for your help and special caring.
With special caring thoughts and continued Hope,
Bonni Hess

Dear Bonnie,
After my son had whole brain radiation in July 2006 for multiple brain mets, he did a cycle of Temodar (I think it was a six week cycle). The report for his follow-up mri of early Sept. indicated disease progression to some of the mets. Afterwards, he had a right parietal craniotomy to one met that had progressed, and cyberknife in Nov. to another. It appears the temodar didn't help him. If your physician would want to make an inquiry, my son's doctor was Dennis Preibat at the Washington Hospital Center (Washington, DC).
my prayers are with you,
Beth

Beth, hi, do you know from the surgical/pathology report if there was any chemotherapy induced necrosis in this removed brain met or it was 100 % useless.

Dear Beth,
Thank you so much for reaching out to share this very helpful and invaluable anecdotal information. I am so very sorry that the Temodar was seemingly unsuccessful in treating your dear son's brain mets and in stabilizing their growth. Prayerfully the craniotomy and Cyberknife treatments were very successful in completely removing/destroying the treated tumors, and the WBR has worked to prevent the growth of any new brain mets. Your graciously shared information regarding the discouraging and heartbreaking results of your son's Temodar treatment provide additional data and rationale for our probable decision to not subject Brittany to the risks and debilitating side effects of treatment with this chemo which has unproven success with ASPS. We will continue our aggressive and relentless search for a treatment which WILL work. I continue to hold your dear son and your family very close in my heart, my most caring thoughts, and my very special prayers, and to hold tight to Hope for the miracle of an effective treatment and cure and for complete healing for him and all of the ASPS patients.
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni

Just a quick reply-- Bonni, thank you and my hopes and dreams are with you and with all of us too, and Olga, I have never seen in any of my son's surgical/pathology reports the word necrosis.