Cure Alveolar Soft Part Sarcoma International (iCureASPS)

What I felt was different was the use of radiation AND chemo after the primary resection? At the age of 10 years old


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3860144/

I do not see them mention radiation AND chemo after the primary resection. As I read it, they started chemo after the lung mets were found. Do not see if the radiation was done initially or not?

I guess this was the second documented case of long periods of time between resection and metastis in an ASPS patient

This was the first
http://www.ncbi.nlm.nih.gov/pubmed/8253458/

Olga the radio chemotherapy reference from the above link

Our patient had been diagnosed with alveolar soft-part sarcoma of the lower extremity 20 years ago and was initially been successfully treated with complete resection of the tumor and adjuvant radiochemotherapy. Due to the extensive tumor manifestation at actual presentation with pleural infiltrations and bilateral lung metastases, a surgical option was not considered. Systemic chemotherapy with doxorubicin and ifosfamide was initiated

Dear Debbie, Thank you for sharing this very interesting and significantly important article which documents the heartbreaking fact that ASPS never actually completely disappears and that it can unfortunately reappear and progress at any time despite many years of sustained disease stability. With Brittany having now had six years of sustained disease stability on Cediranib many people have asked us if she is "cured" and why she doesn't discontinue the Cediranib, but as Dr. Sawyer told us in his great wisdom, she may be macroscopically tumor free, but unfortunately probably not microscopically. This is why all ASPS patients need to be vigilant in having regular and adequate scans to monitor the status of this unpredictable disease, and not become nonchalant even if their disease appears to be stable, in remission, or "cured". Sadly at this time there does not seem to be a permanent cure for ASPS, and it requires pro-active, ongoing, and long term monitoring and management. It is my greatest Hope that someday very soon a permanent cure can and will be found. With special caring thoughts, healing wishes, and continued Hope, Bonni