Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thanks for the update. How did his 8/28 scans go? Is he just on Opdivo now after finishing the 4 doses of Opdivo/Yervoy? How is he doing with side effects? I just had my 6th infusion of the combo (my oncologist wanted to make it 6 and not 4 since I am tolerating it so well with no side effects hopin...

It will likely be SBRT Deb, don’t want too much radiation for it to be immunosuppressive. Thank you Bonnie for the kind words and caring thoughts. Your messages are always so uplifting and I love reading them. I am very optimistic about this combination and have been wanting to do it for a while now...

Hi everyone, It has been so long since my last update. Here is the summary of what has been going on since my last update: PET scan done 3/2022 showed near resolution of the pulmonary nodules with 2 left measuring 2mm (previously 1.2x1.0cm) and a 1mm lesion. My oncologist took me off Axitinib as a r...

So happy for the good news Ivan!

That’s a great point Debbie, which I completely forgot about haha. I didn’t take Pepcid or other antacids in the beginning for that reason and only took it when I had COVID since it is an antihistamine as well and dampens the cytokine storm. I was worried that it was going to get worse but it didn’t...

Hey everyone, I got my scans a few days ago. The bone mets are all stable and some decreased slightly in size (like one in my skull). Some are sclerotic and some are lytic. I reviewed the images myself as well since they are all over my spine, ribs, manubrium/sternum, and in hip/pelvic bones. The mo...

Hi Jack, Sorry I didn't see your response until now. It makes sense then in terms of entering the trial if it is going to be closed out soon, as you can always go back to immunotherapy like your oncologist said. My case is definitely rare, and I attribute the response to the lifestyle changes I made...

Hi Jack, Seems like your lung Mets are growing slowly at around 1mm a month on average and did seem to be slower growing after the addition of axitinib. My thoughts are if it is too soon for you to give up on Pembro and axitinib since you have been working on lifestyle changes which may then allow f...

Hi everyone, I had my 3 months updated scans including MRI brain, CT neck, chest, abd/pelvis with great results. There is shrinkage in the skull met in the clivus where I was having the compression of the hypoglossal nerve leading to tongue weakness/spasms. The size went from 2.4 x 1.3cm to now 1.9 ...

Hi Katie, Welcome to the group! 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 th...

Hi Jack, when I had a discussion with Dr. Breelyn Wilky, she did say that she would use ipilimumab for some patients that don’t respond to immunotherapy drugs alone or the immunotherapy + TKI combos. Usually it is the nivolumab + ipi combo though and it’s not used with Pembro, unless there has been ...

It seems the gastrointestinal symptoms experienced is from the newly developed food allergies to eggs and avocados that I never had previously. It all started around February when my eosinophil count became elevated and has remained elevated since then since I wasn't aware that I had developed the a...

Such great news Shayna and brad! Hopefully the scans this month will show stability. Since they are not sure if the lung nodules are actually mets or not (as I can understand), I agree with you that repeating the scans in a year sounds a bit too far, especially after he was diagnosed only last year ...

Hi Jack, Welcome to the forum that I'm sure no one wants to be a part of, but glad that you found it since there is a lot of support and great information here. I'm glad they were able to remove your primary tumor, hopefully with negative margins? The lung mets are common and it's great that you don...

Hi everyone, The last 3 months were eventful. I experienced some flare up of symptoms including locking and spasming of my tongue as well as frequent abdominal pain. The tongue issue stems from the base of the skull (clivus) lesion found 2 years ago that was treated with gamma knife in New York. The...