Neurofibromatosis Support Group

I do not know anything about it but I know it is a cancer/lukemia drug.
maybe if you search under that you can see some of it.
I think it is a pretty strong drug, one that is used in the last case scenarios but again do not quote me.

Gleevec compared to traditional cytotoxic chemothearpy drugs has pretty low well-tolerable side effects. It only 'attacks' the bad cells.

It's currently approved for treating chronic myelogenous leukemia and gastrointestinal stromal tumor. It's the first line treatment for CML and toted as a 'wonder drug' b/c before Gleevec, people with CML didn't do well. But not over 80% of people respond to Gleevec and their CML stays undetectable.

I heard about it too it would be nice to try but im afraid side affects

I'm prob gonna do a Gleevec trial... hopefully it'll shrink my plexiform

I just got the Gleevec last night for my daughter. I have heard good things about this if you have bad plexiforms. At this point I have no options as my daughter's plexiforms are wrapped around her heart arteries and they can't surgically remove them... They tried 8 hour surgery turned into 10 and they couldn't remove any of them as they were to deep. I will let you know how this goes!

Rabidmama will absolutely say a prayer for your daughter. Really hope this drug works at shrinking the tumors. I have heard that this is only for plexiform tumors. I don't know if it wouldn't work on neurofibromas or if the side effects just don't make it worth the risk. Please keep us informed of how she does.

Hi all,
I am hoping Rabidmama will respond and let me know how she received the gleevec for her daughter's plexi. My nine year old son also has a plexiform tumour in his chest/neck region that is inoperable and we are currently looking for the best treatment. I like the fact that gleevec has already been used by many patients with leukemia, so the side effects have been monitored for years.
I didn't notice the gleevec trial in the list of trials I have found so far.

Thanks for anyone who responds with the trial information.

Gleevec is also known as Imatinib Mesylate. I had heard that the one for kids was closed?... the one for adults with MPNST is still open I believe.

http://www.nfinc.org/clin.shtml

http://clinicaltrials.gov/ct2/show...

Thanks for checking into the gleevec studies for me!
I wondered why I couldn't find it with the other trials.
I see an oncologist March 13th, hopefully he will help us find the best option.

Even if the trial is closed ask your doctor about it anyway...I had heard that a couple of doctors were going ahead and providing it on compassionate grounds. Not sure how that but its worth asking about.