Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Tanja, it is truly generous of you. There is a forum for the travel assistance we have here: https://cureasps.org/forum/viewforum.php?f=94 perhaps you can post there your offer but select the contact method to be used as PM trough this board - the link is on the right top before your name. That way ...

Lets see what cryo dr and surgeon can/agree to do. The bigger metastasis by the blood vessel needs to be reviewed, and the ones that affect your breathing would be good to get rid of also to improve your quality of life. These are all attractive options - TKI, clinical trial, and even another ICI dr...

Hi Geeta, I realize that they can not to a definite surgery i.e. it would be unlikely any surgeon is able to remove all 50 tumors. I am talking about the palliative surgery to remove the tumors in question that are stated to prevent you from having the systemic treatment. VATS surgery or any image g...

Interventional radiologists perform image guided local treatment invasive (such as cryo, RFA, LITT etc) or non-invasive like High-intensity focused ultrasound (HIFU) may be others I was not keeping up with the new ones lately. Our point of reference was Dr.Littrup as the most advanced cryo dr in US,...

We had the contacts with Pf.Vogl from Frankfurt, Germany he is a very advanced interventional radiologist with the experience https://radiologie-uni-frankfurt.de/institut/unser_team/index_ger.html There are also dedicated centers of cryo in Italy and France, I am pretty sure they are fairly expensiv...

Contact information for specialized lung surgery hospital in Germany (as of Jan 2022)
admin dealing with the requests from the international patients:
Miss Schorm
schorm@fachkrankenhaus-coswig.de
Tel. :+49 3523 65 419

Contact information for specialized lung surgery hospital in Germany (as of Jan 2022)
admin dealing with the requests from the international patients:
Miss Schorm
schorm@fachkrankenhaus-coswig.de
Tel. :+49 3523 65 419

Immune checkpoint inhibitors are fairly expensive if you pay out of pocket, so you should explore if they are available in your country for any indications under the medical insurance coverage. If they are, you will have to make a request for off label indication as ASPS is not one of the cancer typ...

At this point you would need some kind of radical intervention to physically eliminate some of the biggest lung mets, the ones that restrict your breathing. Consult the good level thoracic surgeon re. VATS or open surgery. It would allow to continue with the treatments after the healing from the sur...

Hi Martin. The ASPS mets do not grow in a linear fashion, they can stay or they can grow faster so there should be no assumption re. what the growth rate will be in the future based on the past dynamics. The contacts for Coswig are in the Lung metastases topic https://cureasps.org/forum/viewtopic.ph...

Deb if you question re. 18F-FDG uptake in ASPS tumors is related to the subject of the article, I think it is not relevant here. This article talks about the 18F-FDG uptake in immune organs (spleen, bone marrow, ileocecal valve) not affected by the melanoma primary tumors or metastases. I.e. normal ...

Hi
welcome to our board.
I am sorry to hear re. progression. It is a hard news to get.
Where are you located? how many of the lung mets are bigger than 20 mm now?

TAMs were suspected in cases of the hyper progression syndrome that happens in rare cases with ICI and sometimes with the wrong radiation timing when it is added to ICI as an attempt to improve the immune system recognition. There were cases when adding the SBRT to ICI in the middle of the treatment...

Deb, in ASPS topic they discuss FYN720, a PP2A activator. I can not find any info re. FYN720 but multiple citations re. studies about FTY720 inhibition various cancers through PP2A activation. I am wondering if there was a typo or what

Yes as far as I know it is available...but perhaps you should not rush and just wait for the next scan, and try to keep the scanning on the same scanner with the same resolution. They are either very, very small and few or none? Besides if there are only few nodules they might be cryoablated if they...