Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Just a quick update to say we did start sam on Gleevec.
So far no real side effects. He will have a CT scan
in January to evaluate his status. We will also meet with
his surgeon too. My prayers are with each and everyone
of you this Holiday Season!
Hopeful,
Cindy

Hi, 'F', Our cases do sound very similiar with regards to when to do surgery. Sam's CT scans had been stable for a year. I hope we have not missed our opportunity for surgery. Both dr.'s want to try systemic treatment. We have an appt. with the ortho. oncologist first of Dec. so I want to revisited ...

Olga, 'F', and Bonnie, Thanks for sharing your knowledge with me about ASPS and Treaments. As for our latest update, The ped oncologist and the orthopaedic oncolosgist showed our scans to their thoracic surgeons and both agreed to wait on surgery. However, we were not at those meetings. I do know sa...

'F', Thanks for the info with Gleevec. The oncologist wanted to try it since it was the "cousin" to Dasatinib. I was also concerned with how effective it would be since I did not see it mentioned here. Our oncologist said he has consulted with other ped oncologist since we our his first AS...

Just curious if anyone was treated with Gleevec.
Our ped oncologist prescribed 600mg. We were going
to try Dasatinib but there was no known dosage to
work with. Sutent was not rec at this time either?
Blessings to All,
Cindy

Bonni, I am so sorry to hear of your heartbreaking news. It is so frustrating that the insurance companies have a right to determine what treatment should be used. In our situation, there should be more understanding of unconventional treatments that may need to be used. Thanks for keeping us inform...

Thanks for posting the info on Dasatinib. Our oncologist is very interested in this one so we are possibly looking into this clinical trial. I also wondered if anyone was given Gemcitabene(chemo). I want to try something that will help my son but also provide answers to present and future patients. ...

Hi fellow ASPS fighters! My son sammy was diagnosed last year at age 12 with ASPS. He had no systoms. We just happened to find the lump on his left thigh. After 3 mos. ct scans there now seems to be a change in lung mets, so our oncologists are discussing medicines and or future surgeries. \ I just ...