Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi everyone, Apologies for the delay in update. I'm still on the trial and it's been going really well. Here are my progress since last post: Feb 2016 - tumor on jaw(submental mass) decreased from 2.4 x 1.3 cm to 1.3 x 0.8 cm. Other tumors stable, with a few lung nodules shrinking slightly. May 2016...

Thanks Luke, I will prob. reorganize that later opening separate sub-forums for Keytruda and Opdivo etc. I was thinking about your neck area met that grew rapidly. Is it on the same side where the primary was, in proximity to the resection site? I was wondering if it might be the local recurrence a...

Hi D.ap,

Thanks for the reply. How is Josh doing now? I hope he's doing well!

Hi everyone, Apologies for the delay in update. I'm still on the trial and it's been going really well. Here are my progress since last post: Feb 2016 - tumor on jaw(submental mass) decreased from 2.4 x 1.3 cm to 1.3 x 0.8 cm. Other tumors stable, with a few lung nodules shrinking slightly. May 2016...

Luke In their defense They weren't trained to know what they were looking at Such a rarity We need to educate the medical folks Josh in 2012 thought he had a pulled muscle in his upper thigh .. not so ASPS journey began We are so lucky even tho it feels not so to have all the technology , and docto...

I am Luke from China and I am currently participating in this trial. I was diagnosed in April 2013, a year after i graduated from college. I was in the US at that time and have been receiving treatment in the US from then on. Here's a brief timeline of my treatments: April 2013 - Surgery to remove p...

Dear Luke, I am so sorry for your ASPS diagnosis, but am very grateful that you found your way to our Web site and that you have reached out to graciously share the detailed information about your ASPS journey and treatments. The diagnosis of your primary tumor in your tongue is indeed extremely ra...

Hi ntran, My doctors did consider a surgery. But after they reviewed the MRI images, they believed that a surgery would be too damaging (they said at the very least I would not be able to speak again), and there's no guarantee that they would be able to remove all of it and prevent it from coming b...

Hi Olga, Thank you for your reply and I also wanted to thank you for creating this forum and making it possible for patients to share information. The tumor on my neck actually managed to deceive a MRI test too, along with the CT and ultrasound test. Sorry I didn't make it clear in the post. I think...

Hi arojussi,

Hope you'll have great results! Stay strong buddy!

Hi ntran, My doctors did consider a surgery. But after they reviewed the MRI images, they believed that a surgery would be too damaging (they said at the very least I would not be able to speak again), and there's no guarantee that they would be able to remove all of it and prevent it from coming ba...

Hi Debbie, Thank you for your fast resply. My primary tumor was at the base of my tongue. I was told by my surgeon that I'm probably the 3rd person in history to have this sarcoma started on that location. He believed it was a benign tumor until he resected it and sent it to a pathologist, so he did...

Dear ASPS Community Friends, I am Luke from China. I was diagnosed with ASPS in 2013, and have been fighting it ever since. My dad discovered this forum and shared with me many posts from here, which inspired me to stay strong and believe in the future. The past 12 months have been especially diffic...