Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Debbie,

From what I just read in those posts it seems that there was increased pain and / or intestinal bleeding that led to the finding of intestinal mets? Am I correct?

So are you saying it's difficult to identify or find mets/tumors just via Abdominal / pelvic CT with contrast?

Hi Debbie, Recap - I've been on the anlotinib clinical trial since late December 2017, so I've been on it for over a year. Last CT shows overall 'stable' but they found some new mets in my glutes that are subcutaneous or maybe in muscle. --- Upset Stomach: I get upset stomach or IBS whenever I take ...

Jussi, Sorry to hear about the sleeping issues and what not. Hang in there

Great info guys, thank you.

But if there is presence of IBS...high fiber diet is still suggested?

Ivan wrote:Pretty simple for the diet Jen. Eat lots of different fruits and veggies like 5 to 10 different kinds per meal. That should be good for microbiome abundance. And not the same 5 to 10 for every meal either. Variety is key.

Got it thanks Ivan

D.ap wrote:Hi Jen
maybe not Cabozatinib too soon after surgery ?
It can impare healing . After surgery

L

Hi Debbie - Yes we know. I would need 30 days in between before starting cabo

I already have access to Cabozatinib so that's probably the drug i'm going with after I stop anlotinib. Given that it's not ICI, I guess surgery would be fine since there's no known synergy between cabozatinib and sbrt.

It seems like everyone on this forum is leaning towards me getting SBRT radiation for my para spinal muscle met even though I'm saying I want surgery resection. The only reason why I even looked into the surgery option was because someone on here said radiation isn't as good or there's a chance it i...

Having the right diet and microbiome would be very important to getting a response in addition to radiation. hi ivan - what's a good diet you suggest? My gut and micro biome is all jacked up right now...been like that for the past couple months. My stomach is sensitive lately and can get upset kind...

Jen, I found an interesting clinical trial in your neighborhood ClinicalTrials.gov Identifier: NCT03396211 Study to Evaluate Apatinib (Also Known as Rivoceranib) Plus Nivolumab in Patients With Unresectable or Metastatic Cancer https://clinicaltrials.gov/ct2/show/NCT03396211?term=Apatinib&cntry...

From the article that Deb posted, It looks like it would be beneficial to combine the Cabozatinib with some ICI drug. The manufacturer could provide it to you on a compassionate basis, in US it is done. Hi Olga - I already have compassionate access to Cabozatinib. I just haven't started it. Prior t...

Yes, primarily in lungs. The ones in brain have been treated with SBRT effectively. Met in liver was treated with y90. couple small mets in my ribs though and a few small ones in my glutes.

plan is to Cabozatinib (TKI) after surgery.

I've actually haven't had much luck with ICis

No bone involvement for surgery...I think.

I would need to confirm that with the surgeon....

Doctors consensus is that they think it's better for me to do SBRT...even tho they can do either SBRT or surgery resection of the paraspinal back muscle met. SBRT radiation is obviously no recovery time and easier. However I feel like with surgery, I'll know that it's completely gone and resected (e...