Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello again Jen
Whars your plan for Med treatment after either surgery or SBRT?
If immune therapy then it might be better to try the abscopal effect technique ? With sbrt then ici?

plan is to Cabozatinib (TKI) after surgery.

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

Jen
It looks like in reading briefly might I add , on Cabozatinib
It works well with immunomodulating type procedures ?
Vaccines are one . And correct me if I’m wrong Olga,Jussi but sbrt would be creating an antigen, vaccine like affect ? Cabozatinib Is especially shown to be affective in the lungs too, and it’s my understanding Jen that’s where the majority of your tumors are located ?

https://www.ncbi.nlm.nih.gov/m/pubmed/25388653/

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.

Jen, probably you are missing the point of what I said re. SPRT+ICI
It is not rare that people do not have any response to ICI but adding some local treatment to some of their met allowed the immune system to discover the tumor in that treated met and to form a tumor specific memory and attack it elsewhere. Dr.Razak sai to us - he starts with ICI first and if it is obvious that immune system does not see the tumors (they have their immune surveillance escaping ticks), then he adds the SBR to some tumor and then the immune system can see them and others too - called abscopal effect. Discuss that with your treating team, Dr.Razak might answer to them too directly. We added the radiosurgery to one of Ivan's mets just for that. The met was in a glute.

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.

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/NCT ... =US&rank=2
you can call them and ask if Nivolumab is provided as a part of the study?

Olga wrote: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 to Ivan doing SBRT or radio surgery to glute met, did he have good or no response to ICI? After SBRT or radio surgery was done, was it successful in creating abscopal effect?

Olga wrote: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/NCT ... =US&rank=2
you can call them and ask if Nivolumab is provided as a part of the study?

Interesting..thank you for showing that to me. I have medicare hmo and can only go to UCLA....
unfortunately, this trial is at the santa monica sarcoma center which my insurance does not cover.

We did not wait to see if there is going to be a response to Keytruda, Ivan's ICI drug. The scanning is done once in 3 months, he started Keytruda and the radiosurgery was done with the second dose 21 day later. We do not know if there is an abscopal effect or it would worked anyways.
Re. clinical trial - people with rare cancers successfully fought the HMO before to have their treatment covered out of network - besides some items are covered by the clinical trial sponsor, contact them and ask.

The immunotherapy started working even before radiation for me. It was obvious from my symptoms, as they improved substantially in the first month already. It likely resulted in a stronger response though.

Having the right diet and microbiome would be very important to getting a response in addition to radiation.

Ivan wrote: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 of easily. I bought prebiotic pills (over the counter) but I haven't taken any yet because i hate taking pills unless i HAVE to.

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 isn't effective....so now I'm confused as to what I should choose...surgery vs sbrt....

I advocate the SBRT in case you'd get the ICI drug with it. Otherwise I do not see an advantage. I am not sure if there is any synergy with Cabozatinib and SBRT.