Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello everyone, Happy New Year! I hope you all are doing well. I wanted to give the group an update. Around October of 2021, I developed drug-induced lichenoid dermatitis - a rash/skin irritation on my entire body & inside my mouth as well from the immunotherapy. I was put on topical steroids - ...

Hello! I hope everyone is doing well. Some positive news from my oncologist - It appears I have had a complete response in my lungs. In my latest set of scans the radiologist couldn't find any more tumors on the CT scan. My primary tumor has been stable at about 2x3 cm and I have been referred to an...

Hello Trice, Good to hear from you.😊 So you are hyperthyroid ? What treatment are you using for your hyperthyroid ? Or are you fluctuating from being hyper and hypo thyroid ? Also with your weight gain , you’ve been given council on what to watch for being and to report back to the doctors in the a...

Thanks Olga. My endocrinologist is watching my levels monthly via blood labs and we're basically trying to remain at baseline. We've reached that level now, however, I feel that maybe my original baseline may be lower than what I need it to be currently as my diet hasn't changed much and my weight g...

Hi Debbie, thanks for checking in on me! Sorry I've been absent on the forum. Since my last post, I've had positive progress. Thyroid issues have resolved and levels are back to normal, I am currently taking thyroid replacement for the foreseeable future. My weight is back normal, even higher than p...

Hi all, I've reached my first scan results since starting my treatment of Odivo (nivolumab) and Yervoy (ipilimumab) and I wanted to provide an update for you all. The TLDR version is that my lung mets are still innumerable, but have reduced in number and size significantly. My primary tumor has also...

Olga - I hear you on the pros and cons. Doc let us know we can stop at anytime we'd like which is reassuring Debbie - Thanks for the info on Dr. Kummar, we will ask about her! The Keytruda and axtinib would be off label, luckily the specialists at Stanford said they don't typically have any issues w...

Hey Olga thanks for the reply, That's great to hear that your son is doing well. My primary tumor is about 7cm. With regards to the clinical trial, there are no financial advantages that I can think of. It was a suggestion by the sarcoma specialist (meeting later this week) to the oncologist that I ...

Hello everyone, my name is Trice. I am 33 and was recently diagnosed with stage 4 ASPS with the primary tumor located on my right shoulder about the size of a grapefruit with innumerable lung mets on both sides. I noticed the primary tumor about a year and a half ago and was unfortunately misdiagnos...