Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Does anyone know why Keytruda is only funded for up to 2 years in Canada (British Columbia) specifically. The messaging I'm getting is that even if patient's disease shows stability or continued response on the drug and exhibits no side effects, the treatment ends approx 2 years after first infusion...

Ivan wrote: ↑Tue May 30, 2023 6:08 pm Hello everyone. I continue to be in good health, and my scans are NED.

Congrats Ivan! Love to hear that! Thanks for the update.

Hi Cass, I'm sorry for your diagnosis. My heart truly goes out to you. I signed in, just to chime in re this question of yours: "Good family friend highly recommends to get a second opinion at Mayo clinic. It's very costly. Do you think it's worth it?" I'm not sure if your doctor has menti...

Hi Ethan, First of all, I wanted to say I'm sorry about your diagnosis. I feel for your post very much, probably because I see a lot of parallels between your case and my partner's. He was diagnosed with ASPS in June 2020, primary mass in his leg, and a few suspected mets in his lungs. The mets are ...

Thanks for all the responses, everyone. We appreciate the kind words, as well as your input on the scan schedule. It gives us added confidence when we head into the oncologist appt later this week to discuss the path forward. Everything will depend on the CT scans Brad went for today. He had head, c...

Hi everyone, It's been a few months since my last post. A bit of a rollercoaster these last few weeks, but in a good way. Brad's been doing well. Back to full time work and feeling good about it. He cannot wait to start the mountain biking season. Like mentioned in my last post, he had a follow up C...

Another update on Brad's journey. His surgery to remove the primary tumor from his lower leg went very well. He’s recovering at an exceptionally speedy rate. After only a week and a half, he’s almost off crutches and has been riding a stationary bike to keep things moving! We’re all proud of his str...

Ivan,
Your progress is amazing and so glad to hear all scans have come back with no concern. What an amazing feeling that must be. Thank you for keeping us updated, it gives hope to those in the thick of it.

Haven't updated for awhile. Took a break from 'cancer talk' over the holidays. Hope everyone here had a good one. Brad successfully completed radiation therapy to the primary tumor in his leg on Dec 16th. It was a long 5 weeks, but he got through it with minimal side effects. Mostly just a lot of fa...

Hi Kyle, Agree with Olga here! The mets shouldn't have to be biopsied to start immunotherapy. Typically, I don't think lung biopsies are even possible until the met is bigger than 1cm - and even then, a lot of dr's are hesitant. The beauty of immunotherapy is if it begins working, the biopsy was nev...

Thanks for the lead, Janice!

Hi Janice, Just caught myself up on Alex's journey. I'm glad to hear that whatever is in the lungs has remained stable over several scans. Just wanted to echo that I know what you mean about scan measurements. I've noticed the same with my partner's reports. Especially the measurements between MRIs ...

There have been some updates and changes to Brad’s treatment plan I thought I would share. First off, Brad’s MRI results of the primary tumor in his leg came back. It did not show any drastic change in dimension, but the report reflected it seemed like less "activity" is going on inside of...

Hi Debbie/Olga, Thanks for the well wishes. To answer the questions from your last posts: - The 3 resolved nodules were much smaller in size than the largest. They ranged from from 3.5-6mm. - Scans were done just prior to his 4th cycle of Keytruda, meaning he had only completed 3 cycles at that time...

Just wanted to say congrats on this positive news and good luck with Keytruda pushing forward!
We will all be thinking of you!