Cure Alveolar Soft Part Sarcoma International (iCureASPS)

The abdominal MRI is clear. One of the two cardiac metastasis were reported to have shrunk a few mm. The other one is stable. The tumors are not enhancing with contrast.

Nhi, the side effects of pd1 for me are nonexistent. A little bit of dry mouth and my tongue gets a bit irritated sometimes.

Professionals will only do fecal transplant for treating recurrent c. Deficile infection regularly. Not saying it's not possible to convince them but it's definitely not an indicated medical use of FMT. Nhi, I'm gonna copy paste a section of the microbiome document in working on below. It's prelimin...

Latest data confirms what many of us have already known for some time regarding diet and PD-1 response: Diet, supplements may affect immunotherapy response among patients with melanoma “What we found in profiling patients prior to therapy is that certain features of the gut microbiome were associate...

Yeah they aren't fast by any stretch of imagination here. Either way, it doesn't make much of a difference. I am not too nervous about the results currently. There is substantial evidence that lifestyle factors like sleep, stress, diet, and exercise can all play a very important and interconnected r...

Well goddamn. Radiologists like these make me absolutely furious. Lazy excuse of a human who absolutely 100% fails at their job and should be held criminally liable for missing a >1.5 cm tumor. Tom has a long standing battle with a spinal tumor, and he's been stable on PD-1 for 2 years now, I believe.

Now that you have more active disease I recommend every 6 months for brain MRI. A new nodule could grow to over 1 cm within a 12 month scan interval - not good. It really depends on the wether the ablation is complex or not. You need to consult with some local doctors first. If it is indeed a comple...

I second sending a scan to Dr Littrup for consideration.

I just want to provide an uneventful update. I feel well, and there's no changes.

There's been a bunch of scans. Brain and lungs are totally clear. Abdomen and heart - results in a couple of weeks.

arojussi wrote:I greatly appreciate support from this forum. I am just cranky, because I am finally dying.

It's not over till it's over, so let's do everything we can.

If it's from stiffness in the muscle in addition to just pinching it and holding the sternocleidomastoid for active release, you can try something like a PNF stretching - https://stretchcoach.com/articles/pnf-stretching/ But I think massaging it is the best option. You would work the whole muscle fr...

Easy enough as do it yourself. There's a guide on YouTube. I can see it as one of the best paths forward.

Why not try a fecal transplant after antibiotics?

IMO if you're truly stable and you're tolerating OK I wouldn't have surgery at this time. You're not going to resect all the tumors likely (since there's probably many more microscopic ones not visible) so the value added is dubious. The inflammatory responses after surgery are scary to consider if ...

6 weeks to 3 months mark is what some guidelines name as reasonable controls for pseudo progression if I'm not mistaken.

I think a cardiac MRI would be timely to do soon. Pseudo progression typically lasts for a limited time, so things should start moving in the shrinking direction shortly with a response.

How long have you been on the current protocol now, Jussi?