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Title : IDH1+ GBM recurrence--any help appreciated!
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IDH1+ GBM recurrence--any help appreciated!

Hi,  I have found Stephen and many of you to be great sources of information over the years and would really appreciate any help.  (Unfortunately, I can post but not comment thru some weird glitch.)  I have given my son's background before, but briefly he is a 26 y/o with secondary GBM (IDH1+) which was found to have recurred on a scan today.  He was diagnosed with AO2 (or perhaps AA3) in 2011 and had not quite total resection, "left-over" resected in 2012 and then had proton therapy as part of a clinical trial.  He did well for over 5 years--graduated from college and started med school.  He had a very small recurrence found 1/18 that had mutated to GBM (hypomutated with no actionable mutations other than IDH1 per Foundation One) with a very total resection.  He had never had any chemo and we opted to use a PARP inhibitor (BGB-290) with temozolamide--started 4/18.  He returned to medical school on chemo--tolerated both pretty well.  Today found out that 3 mm area of "uncertain significance" found 7 weeks ago is now 2.6x2x2.7 cm and near a ventricle (though some of size likely incorporates scar).  So, trying to figure out the next step. 

He was offered TMZ and radiation as options.  He wants to have the tumor "debulked", which seems supported in the medical literature.  (His tumor is left frontal lobe.) 

Options we have considered:  TOCA (thru IST program maybe?) with proton
                                                 LITT  with pembro
                                                 AZD-1390 trial --since ATM/ATR inhibitors useful if IDH1?
                                                 Duke Poliovirus--only works 21% and no better if mutant
  (Of course, I don't know if he will qualify for any of these.)

Would very much appreciate any suggestions!     Marcia

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