Hi all,
My husband is being treated for his second GBM
relapse. He's receiving irinotecan and Avastin at the moment and his
last two MRIs have been stable, interpreted as radiation necrosis. The
tumor size hasn't changed at all (close to 4cm in diameter) and he's
experiencing neuropathy on his right side, speech difficulties and major
brain fog on some days, but overall doing okay. In fact, he has
improved significantly since July, when he could barely form sentences,
was losing function of his right side and was very sensitive to noise
and light. Now he's going on daily walks, can spend time around our
rambunctious kids, and his speech is much better-- we are feeling very
grateful.
I'm considering adding to his
cocktail but I'm not sure what to add and what we should prioritize when
talking to his doctor. Here's what I'm considering, I'd be open to any
suggestions beyond this as well. His tumor is MGMT-methylated and
IDH1-mutant.
-Chloroquine-- Is this
something we would have to source on our own? And if so, is it still not
available in the U.S.? Has anyone purchased from the vendor in Canada?
-Mebendazole-- What is the recommended dosage for this? Is it potentially more effective than chloroquine?
-PARP inhibitor-- Is there off-label use approved with olaparib in the U.S.? And can this be used with his current treatment?
-Disulfiram- Is this potentially a bad idea if he's already experiencing neuropathy?
-Sodium
phenylbutrate-- I haven't read too much about this one other than a
couple of successful case reports. I'm assuming this is something we'd
have to get his doctor to prescribe but I'm not sure if it's worth
pursuing.
-Sativex (or similar)- Where is this available? And what is the recommended dosage?
I think I'm most interested in introducing mebendazole, disulfiram, Sativex and a PARP inhibitor, if possible. Interested to hear others' experiences with any of these.This blog/community is an excellent resource-- thank you in advance!
