[edit] Jessica
7 Aug 2008
Subject: starting something new
Hi all Just thought I'd let people know that my oncologist managed to convice a drug company to give me access to a IGF1R drug. This drug hasn't been used in GIST yet but has shown promise in invitro trials in wildtype gist. We hope to start next week. Will keep you all posted as to how things go. Jessica
6 Aug 2008
Hi Jessica,
I hope the drug works well for you!!
From what you described earlier, you do not have wild type GIST in the strict sense as folks like Becky Bens. You stated that you have NF-1 related GIST with a "mutation in exon 18" which I presume is the PDGFRA gene. So you have two known mutational defects...one at the cell surface PDGFRA and one inside the cell in the MAPK pathway...that becomes hyperactive in NF-1 GIST.
Has your oncologist considered a drug or combo that targets the Ras-Raf activation state (which is the problem in NF-1) as well as something that blocks PDGFRA? A combination of sorafenib and tipifarnib for example?
http://clinicaltrials.gov/ct2/show/NCT00244972?
Marina