Gleevec

[jcs2007]

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

[Fictional]

This post should probably be filed under the anti-angiogenesis agents topic.

I think there have been a few people who had been tried on Gleevec unsuccessfully. Ashley Charron had very aggressive disease and she was on Gleevec with some other medications (patient registry, alveolarspsarcoma.net) that did not work. It does not mean it would not work for any patient though. I think Gleevec was not recommended as a first line try for ASPS at Dana Farber because ASPS doesn't have ckit. ASPS does have VEGF and PDGF, and there have been a few reports of ASPS response to Sutent, but also risks too. Our daughter was on Sutent for about 6 months. It might have stabilized the growth of the primary and made it easier to resect, but it did not prevent the development and growth of a least a few lung metastases.

Is it possible your peds onc is not specifically familiar with alveolar soft part sarcoma?

[jcs2007]

'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 ASPS patient. HOwever, our surgeon has
seen ASPS patients before. He mentioned trying Gemcitabine.
This disease is baffling. However, I am thankful for this website
and the fact right now Sam is feeling so good. I guess that is
pretty normal though.
Thanks again,
Cindy

[Olga]

Cindy- why wouldn't you open a new topic for the Sam in the Personal updates with the short description of the situation so you can add the treatments/surgeries if it will be done later on to keep us up to date. I am very vague re.his current lung situation and it makes harder to suggest if any clinical trial/or off label treatment sounds reasonable for him. Surgery is a first line of treatment for ASPS patients even in the metastatic state and it should be evaluated further, also you have to know the speed of growth of the lung mets etc. We all looking for a systemic treatment for ASPS but you should be very careful in your attempts, starting something that is suboptimal can exclude him from the clinical trial or he can miss the time when the lung surgery can be done with the minimal tissue loss etc.

[Bonni Hess]

Dear Cindy,
Thank you for writing. Based on my knowledge of other ASPS patients' experience with Gleevec, I agree with Olga and 'F' that you should proceed with caution before moving forward with this treatment for Sam. Although the detailed anecdotal patient information is unfortunately no longer unavailable from the TAAASPS Web site since it was inexplicably removed from that Web site by the TAAASPS administrator two years ago, I remember that several ASPS patients discouragingly had an unsuccessful response to Gleevec. However,this doesn't necessarily mean that someone else might not have a successful response, but I think that it is very important for you to research as much data as possible before making this treatment decision, and make sure that your oncologist is extremely knowledgeable about the use of this drug for ASPS, and can provide you with up to date statistical data and information regarding the results of its use with ASPS patients. Since there is heartbreakingly currently no completely effective systemic treatment available for ASPS,these treatment decisions are especially difficult, and require extensive research to select the one that offers the best chance for a successful response based on documented data and anecdotal experience. Please know that my best wishes and special thoughts will be with you, and keep this Forum updated as you are able.
With special caring thoughts and continued Hope,
Bonni Hess