Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Unfortunately she now has two new brain tumors, one of which is causing a midline shift, the plan is surgery, followed 2 weeks later by resuming the chemo, which is hopefully going to shrink the abdominal tumors and then radiation where the brain tumors are going to be removed, her left upper extrem...

Thanks, she started her first infusion of this on January 30, we’re hopeful

Thanks for the Journal article, when the primary was removed from her thigh 9 years ago no molecular studies were done. We are speaking with the Oncologist Tuesday about Yondelis, given the rarity of ASPS I don’t expect there will be any studies specific to ASPS , maybe some use in sarcoma in genera...

The plan has now changed and rather than Doxil, they want to start Yondelis, which is given as a 24 hr infusion, it has been used with leiomyosarcoma —- is anyone aware of its use with ASPS ?

After 2 cycles of Tamador they did scans and the abdominal tumors have increased significantly, now the plan is to start Doxil next week —- anyone have experience with the efficacy of Doxil with abdominal and pelvic tumors ?
We are at a point where we are searching for something to work. Thanks

She has been on steroids, thanks

First gamma knife —- 2 areas where tumors excised and 2 more small ones
Second——- 3 small ones
Headaches, Drs saying may be from the radiation, losing hair at areas of treatment, otherwise doing pretty well

Diagnosed at 24, now 33, primary was in thigh, quadricep area , large 13x5x4 cm. Tumors did seem to remain stable when on Keytruda and were only in lungs , only after stopping for IVF egg harvesting did follow up scans find lesions outside lungs Started second cycle of Tamador two days ago, dose upp...

To answer an earlier question, before the IVF egg harvesting break from treatment, she was on Keytruda

Thanks for the comments, she had a gamma knife treatment last Thursday and starts next round of Tamador on December 19,Drs are focusing on the brain mets, at meeting with oncologist last week Dr said was hopeful the Tamador would impact the other, pelvic , abdominal, tumors, We’ll ask again about im...

Thanks again, first treatment was aTKI, then immunotherapy, I don’t recall specific one , , nodules in lungs have grown, last scan, few weeks ago described largest as 2.1cm x 2.4 cm, two others described about the same size, also described enlarged nodes in mediastinum, 2.1 x 2.0 cm Treatment has be...

Thanks for the responses. She had been on immune checkpoint inhibitors, previously had been on TKI drugs but developed severe neuropathy. Went off everything for a course of IVF egg harvesting. Went back on immunotherapy but this summer found the multiple brain lesions. After surgery and gamma knife...

Our daughter has had ASPS for 9 years, typical slow growth, small tumors in lungs,until this summer, now lesions in abdomen,pelvis and brain, had two excised from brain in July followed by gamma knife in removed areas and for two smaller lesions, follow up MRI showed response but also showed new les...