Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I'm sorry to hear that you, like me, have a heart metastasis. However, I am glad to hear that you were able to successfully stop and restart PD-1 :) 1) Eat lots of fiber 2) Take vitamin D 3) Get lots of sleep 4) Do cardio 5) Lift some weights to gain muscle If that can all be done, I bet you're gonn...

👍🏼 Thank you Ivan We are still on Keytruda and have had prior reports of adrenal gland reduction reports in 2016 , with Opdivo . https://cureasps.org/forum/viewtopic.php?f=4&t=750&p=10252&hilit=Adrenal#p10252 We will report to the powers that be . Also make sure your MRI of brain includ...

I have discontinued PD-1 after 26 months with sustained response. If there's a recurrence, I intend to resume it. I'll keep getting brain / abdominal / cardiac MRI and chest CT every 3 months or so for now. Presently, the main problem I have is adrenal insufficiency that has developed over the last...

D.ap wrote: ↑Sat Feb 22, 2020 2:49 pm Hey there 😊
The gated MRI ?
Thanks for the update !

Yes, the one with EKG synchronization and 100 breath holds.

D.ap wrote: ↑Sat Feb 22, 2020 2:45 pm Ivan ,

I’m overjoy to hear of your news!!
Will echocardiograms be performed routinely as well ?
Love ,

No, just cardiac MRI. They are higher resolution and more detail. The only thing is, they take like 1.5-2 hours LOL...

I have discontinued PD-1 after 26 months with sustained response. If there's a recurrence, I intend to resume it. I'll keep getting brain / abdominal / cardiac MRI and chest CT every 3 months or so for now. Presently, the main problem I have is adrenal insufficiency that has developed over the last ...

Ps I like this utube presentation by Dr.Kevin Jones . He and others of the Utah institute , help to discover the lactate transport that ASPS can utilize in its progression . https://m.youtube.com/watch?v=fVKiQnOCsU0 This is kind of weird. ASPS primary may grow in high lactase areas. But primary isn...

Hi Debbie, Thank you so much ..and really great to hear your son is healthy .. Hi Olga, The primary 3x3x4 cm was resected and Rt by 6 months 2016 before chemo. Before Pet scan , we done lung Ct which they were reduced in size from 0.4 cm to 0.1 cm , no new met and other scan shown clear and PET sho...

I just want to tell everyone that Domenic has successfully undergone surgery as planned and is recovering well.

It's truly a tragedy. Especially considering Jussi & family did pretty much everything that could have possibly been done. He tried many things, and has advanced our understanding by his example. He was always nice to talk to. It was a long journey for him. At least his suffering is also finishe...

Other than the high potassium levels which I keep having issues with, everything is well. The cardiac MRI shows continued stability, trending towards very slow shrinkage. I am consulting an endocrinologist regarding the potassium issues. I have a suspicion that it has something to do with my damaged...

Hi everyone. Thought I ought to reply since I haven't written in quite a while. I contacted one of the doctors who did the cryoblation but he didn't think he would be able to do it and suggested Dr. Rolle, who had already said my mets were too large for him. So I started the clinical trial at NIH -...

Also, off label is way better than trial. No need for unnecessary biopsies etc. More flexibility with treatment without being taken off etc.

This is a tricky situation. Please find out the approximate date of growth of this met. I would contact Dr Littrup as a backup. If he says yes than perhaps we can think about it. If he says no, there's nothing to think about.

Since Dec 2017. Gadolinium I believe. ALL GOOD NEWS Ivan!! Thank you for sharing and providing strengthened Hope to those of us in the ASPS Community. CELEBRATING with you and your family, Hoping for continued good scan results with more met shrinkage/disappearance and stable disease. and reaching o...