Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear Olga,
I was unable to post the following information in the Systemic Treatments TKI topic, so am Hoping that it can be moved there.

Dear ASPS Community Friends,
I am posting excerpts from some encouraging information that I found on another ASPS site regarding a promising new TKI systemic treatment that has apparently shown success for an anonymous ASPS patient. It is difficult for me to understand why ASPS Community patients don't share their anecdotal treatment information on this CureASPS Discussion Board so that others can learn about, and possibly benefit from, promising new treatments, but I will continue to search for and share any new information that I find in Hope that other ASPS patients/family members will do the same because truly shared researched and anecdotal treatment information remains one of our most powerful weapons in fighting this extremely rare and little known disease.
With special caring thoughts and continued Hope,
Bonni

"Just heard about a ASPS'ers response to cabozantinib (aka Cometriq) ! We've posted about this drug before - it's FDA approved and combines VEGF inhibition with met inhibition. Side effects seem tolerable.
The drug shares some characteristics of Sutent and Cediranib, but also ARQ197.
Someone just told us of a response of brain and systemic mets to cabo - also received SBRT to brain mets, but untreated ones also responded. There may be a bit of a mix - 2 on the scalp may be a little bigger. Side effects include the standard VEGF type - nausea, decreased appetite."

Thanks Bonni, will keep an eye on it. I found that Cabozantinib-s-malate is approved to treat Medullary thyroid cancer, probably it is given to an ASPS patient based on its MET inhibiting properties off label, or may be as a part of some clinical trial that is going on currently?
Cabozantinib for Adults With Advanced Soft Tissue Sarcoma
http://www.cancer.gov/clinicaltrials/se ... d=11783608
lots of exclusions there incl. active brain mets.

Hi Olga,
I was somewhat surprised/perplexed that this post on the ASPS Facebook site said that an anonymous patient had "a response of brain and systemic mets to cabo - also received SBRT to brain mets, but untreated ones also responded", since it is my understanding that having active brain mets usually excludes a patient from taking most TKI treatments due to the risk of cerebral hemorrhage. It is unfortunately very difficult to obtain accurate/complete anecdotal treatment information when it is not openly shared because "this is private information from someone within our network" as described by the person who posted the information on the Facebook site. It is very sad and furstrating that people don't seem to understand/care that sharing information can and does save precious Lives, and that if everyone would share their information we could all work together to try to win this very challenging battle.
With special caring thoughts and continued Hope,
Bonni

I'm creating a new sub-forum for this new drug which could be of interest to our community

Thank you for doing that Ivan. It is much appreciated
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni

Bonni, ASPS diagnosis can make anyone crazy and depressed and tired and hopeless so I would not expect any of us to behave in an ideal way. I am perfectly OK with any number of the alternative ASPS web-sites/pages as long as they are open to read (so they do share the info just not at our board) and there are people actively working to study ASPS and its current up to date management, it is still very helpful versus just sitting there doing nothing. For example this new information about Cabozantinib appears to be extremely interesting option for the people with the unresectable bone and soft tissue mets (see my entries at http://www.cureasps.org/forum/viewforum.php?f=66) and we could have missed it if not for the other group. So kudos to them and Bonni for re-posting it!

Dear Olga,
I agree that it is extremely important and beneficial to have as much ASPS information as possible being researched and shared. I just think that It is unfortunate that the information is spread out among several different sites rather than being posted and available on one cental ASPS site where people can more easily find it rather than having to use valuable time monitoring all of the sites as I do. However, if people are unwilling to participate on one main ASPS site for whatever reasons, I am certainly grateful that the information is at least publicly shared.
With special caring thoughts and continued Hope,
Bonni

Thank you Bonnie for re-posting the info for us
I completely agree with you the info should be gathered at one centrer like here. Maybe they don't know this website? I don't know if it's polite and feasible to tell them about here.
Cabozantinib does looks promosing especially for patients with brain mets. I know a lot of experiences of Lung cancer with Cabozantinib. I'm sure if the info is useful for us.