Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear ASPS Community Friends,
For those of you who don't already know, the NIH ASPS Phase 2 Cediranib Clinical Trial was thankfully re-opened for enrollment last Friday, and new patients are now being screened for enrollment and participation in the Trial. Hopefully those patients who have had their screening appointments and have been accepted into the Trial will keep this Board updated on their Cediranib experience and results because shared anecdotal treatment information is so vitally important in our shared battles with this extremely rare disease. My best wishes for a very successful response to the treatment with sustained long term disease stability and tumor shrinkage/necrosis are with everyone participating in the Clinical Trial. Take care everyone and keep in touch as you are able.
With special caring thoughts and continued Hope,
Bonni

Hello everyone!

I just returned from my last trip to NIH and I am happy to say I was enrolled in the trial! So far things are going well. I'm getting ready to fly back again on Sunday (seems like this is going to have me on the go a lot). I've experienced some signs of side effects but nothing too bad as I have not been on the drug too long. I'll just be hoping for some good results and some tumor shrinkage I'll try to keep the board updated as new things happen or any changes that occur! Hope everyone is doing well.

Jordanne

Dear Jordanne,
Thank you for thoughtfully updating this Board with the wonderful news about your enrollment in the NIH Trial. We so much enjoyed getting to meet you and your mother yesterday and sharing special time together with both of you . Our special healing wishes, most positive thoughts, and greatest Hope are with you for a VERY successful response to the Cediranib. We will be staying in close touch and closely following your Cediranib treatment experience and your continued ASPS journey. Take care, stay strong, keep believing, and have a good trip and safe travels when you fly back to Bethesda.
With warm hugs, special caring thoughts, and continued Hope,
Bonni