Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I just wanted to let anyone who follows this know that I'm doing alright, no changes to report.

I don't have any meaningful updates. Doing fine, no issues related to ASPS. Scans are coming up next month, if anything is unusual I will post another update.

For anyone doing immunotherapy, some good information here: https://docs.google.com/document/d/1iu0Hw-Bk1gORwR5Q4kqufZ6L7vadvlZr8gFHiKmwMMw ...

I just wanted to say that everything is well with me, and I continue being NED. Next scans are coming up soon.

It will be 5 years since the end of all treatment in Feb 2025.

Random nodules growing in the lungs post ASPS diagnosis.. yeah, right. Long odds of that.

Hi,

PD-1 therapy is not available in your country? Just do cryo. There's no need to do an open thoracotomy for so few, and so slowly growing nodules.

Ivan

Once again, I had my latest round of scans. Everything is NED. In a few months, it will be 4 years since I've stopped PD-1 therapy in Feb 2020.

Hello everyone. I continue to be in good health, and my scans are NED.

Dear ASPS friends,

Happy to report that my latest scans are clear. They were insanely delayed since last October when I had my last round. After a huge struggle, finally completed them end of June. Brain, abdominal, cardiac MRI and CT scans is what I had done. While I don't have the reports in hand ...

Any trial you can join for this: https://www.nature.com/articles/s41586- ... _83ByovlpY ?

It's very promising

Hi Martin,

I suggest you get copies of your own scans, and look at the nodules yourself across multiple scans. It is not complicated. This software https://www.microdicom.com/ will view them.

Spend a few hours on them. Radiologist generally don't care enough to look carefully.

Is your leg still inflamed from the radiation? Or is that totally resolved now?

How would you say your overall condition is physically? Are you sleeping well? Are you able to exercise at all?

Have you been given antibiotics?

Thanks both. I’ll discuss with the team 👌


Lung mets tend to grow slower than brain mets, and are just less immediately dangerous. A 1 cm brain MRI could cause an aneurysm. A 1 cm lung met is not immediately dangerous and easily treatable via cryoablation.

I would say at most 6 months between ...

Hi Ap.
The Onc just suggests PET and Mri. No bone scan or CT. We’ve asked for other scans but they confirmed currently scans are enough.

In lung PET 2020 shown that no any met and also no met in 2018, 2019 compare to 2017 PET result and CT lung.

They did MRI abdomen that found 2.7 cm at post ...

Sunman wrote: Mon May 24, 2021 8:59 am She had 2 nodules removed. Each was 3mm. One came back positive for ASAP.

What kind of follow up is she on presently?

Hi Ethan,

I got a few questions.

1) Are you able to get exercise despite your leg? Something like cycling on a stationary bike to start. You need to actively work on rehabbing your leg, not just wait for it to heal. Progressive overload.

2) What is your diet like? You need to eat lots of ...