Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Ethan welcome to our forum. It is a hard blow to get when Dx with ASPS for sure. My son Ivan was Dx when he was 17 years old, he is now 35 yo, we live in Canada. His primary was in his arm and he had two consecutive surgeries to remove the primary tumor. Multiple lung metastases during first 5 y...

Hi Ethan , Thank you for your service ! I’m sure sorry to hear of your diagnosis , being dx’d , of ASPS. It really was a hard pill for our family to swallow back almost 9 years when our son Josh was dx’d .😕 So my understanding is you’ve had about 2cms of primary removed and have been on Keytruda si...

Hi Everyone, My name is Ethan and I am a 42 year old married, father of four, diagnosed with ASPS in Oct 2020. My story is strange...at least to me. I was deployed in Ashgabat, Turkmenistan with the U.S. State Department at the American Embassy when I started having pain in my leg (Aug 2020). The do...

Seems you’ve had great response so far but I would agree to maybe plan to remove the primary tumor? Maybe they can do some RT to it as well to shrink it even more and help the immunotherapy work better at the same time before removing it. Olga has already discussed the resistance issues which is ve...