Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Its a very good news apparently - you were scanned intensively and no new metastatic sites are found, and the cluster is shrinking. Its unlikely that you would be able to get all the scans if not for the clinical trial preparation, good to know and to have a clean base line scans for the future. Per...

Its for her daughter she was 12 yo in 2016, 6 years ago so she should be 18 now. Ellie is still on cediranib, in UK

Amazing result, hoping for more the same for you!

My thoughts were about the biopsy skewing the immune response. I would avoid any interventions in the middle or end of the cycle between the infusions and to move them all toward the infusion */- few days, in that way the inflammation from the biopsy itself may attract the immune cells to a tumor an...

perhaps you did have some response to immunotherapy based in what you described, on the other hand having a vaccine during immunotherapy can cause this effect as well as your checkpoint were blocked. Looks like your immune system does work apparently overall. As of now, there is no other choice for ...

Hi Mamdy, is it really necessary to get nivolumab as a part of the combo/clinical trial? It shows good results in ASPS along with another drug of the same immunotherapy group pembrolizumab. The cluster of mets can be also cryoablated as Deb said and it is a relatively easy for the patient if the dr ...

Thanks Deb, it sounds amazing, the progress they make with the mRNA nanoparticles. The advances in this technology could be used in any gene therapies.

Good to hear re. procedure went well, it always pays to get the complicated procedures like this with the lung punching performed by the very experienced interventional radiologists. The procedure sounds interesting, we had someone who had this type of treatment done to a heart metastasis in China, ...

Hi Mandy, Ivan was on another ICI (immune checkpoint inhibitor type of drugs such as nivolumab) drug pembrolizumab, for two years, it worked well for him. It does not seem to be any advantage for ASPS patients to have the combo with the addition of ipilumimab. Please find and consult an intervention...

Might be Anlotinib side effect, unfortunately. Most clinical trials show the following side effects: hand and foot skin reactions, hypertension, fatigue, and lipase elevation, also brothers syndrome, bleeding, proteinuria, hoarse voice, rash, fatigue, liver damage, diarrhea, and mucosal ulcer as rar...

Seth, this is very unfortunate. Lets hope you are going to have a good success with the surgery. It makes a sense to look for the best experienced abdominal surgeon in the field. Good luck.

Well, basically for the nodule to be not seen before 2020 and now its at 10 mm, it would mean it was smaller than the slice size - 1-2 mm - and grew rather fast during 2 years to reach 10 mm. Hard to find other explanation though.

May be I am missing something, but I do not see that you are the right fit for this? its not for ASPS specifically, and to be eligible, you need to have mets that are not lung mets as I understood from the description? The good news is that Dr.Littrup is working:)

Pembrolizumab After Carbon Ion Radiation Therapy for Alveolar Soft Part Sarcoma Shows a Remarkable Abscopal Effect: A Case Report https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8841365/ CIRT was a safe and effective treatment for localized ASPS. Combination of CIRT and anti-PD-1 antibody can potential...

super interesting subject, thanks, Deb. As an implication to a strategy approach, it might be beneficial to start ICI in the late Fall/Winter time before the seasonal allergy starts, and be mindful about the allergens in the household environment.