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Hi, I write again seeking advice. I have very much appreciated comments/advice over the years and the expertise of those on this blog. Unfortunately, for some weird reason I cannot respond to responses, but am very appreciative!
My 26 y/o son has had another recurrence of his IDH1+ secondary GBM in L frontal lobe..
To summarize his past history, he had an AA3 diagnosed when he was 18 y/o treated with GTR and proton therapy only (clinical study) and had 5 good years where he graduated from college (with honors), worked and started medical school. His tumor recurred his 1st year of med school as a very small area of IDH1+ low mutation GBM (unmethylated) treated with aggressive GTR and then started on BGB-290 and TMZ study. He was on study from 4/18 thru 7/19. He completed a year of med school successfully while on chemo, but pretty low doses of TMZ used due to anemia (needed a few transfusions). A 3 mm "scar" seen on 5/19 scan grew into a large tumor by 7/19. So, since not great options, we opted for immunotherapy given his hematologic issues with preceding therapy--he was enrolled in IL-12 + Veledimex +PD1. His recurrent tumor was found to be hypermutated and now methylated (?)--so thought it turned out to be an appropriate choice. He had another GTR 8/19 with excellent neuro recovery. His MRI showed a strong inflammatory response around meninges/spinal cord, which study group felt was due to treatment (and they were correct). Anyway, MRI at 2 months after surgery showed a large L frontal lobe mass--thought was that it could be pseudoprogression, but surgical path showed all tumor (don't have final path yet).
So...he had another GTR (fabulous neurosurgeon) and has no obvious cognitive deficits (he is tutoring Latin grammar at the moment). He starts radiation next week (has been 7 years since proton) and will likely still have immunotherapy and ...something else. (Immunotherapy--likely Keytruda which is FDA-approved for mismatch repair deficient tumors?)
His current neuro-oncologist seems excellent, but the question is what else?
Options that have been considered--olaparib--radiosensitizing and might work with IDH1
--CCNU--old standby--don't know how long will tolerate
--regorafenib--superior to CCNU in one study--fewer blood probs?
Interestingly, his tumor did not grow at all in the 2 weeks before surgery, so wonder if immunotherapy was starting to kick in, though I was told that tumor growth is not always linear.
I know that this history is long and somewhat technical, but also that there are some very knowledgeable people on this blog. Any insights of those on immunotherapy, CCNU or regorafenib would be appreciated. I would also be curious if anyone has been on olaparib--it was tolerated well with radiation in elderly patients in British study.
Thank you so much for any help you can give....Anne
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This time, hopefully can give benefits to all of you. well, see you in posting other articles.
You are now reading the article with the link address https://polennews.blogspot.com/2019/10/hi-i-write-again-seeking-advice.html
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