Everything started Aug 20, 2014. My son has had 3 stable MRIs after two recurrences, two craniotomies, one gamma knife surgery, started using Optune in April 2015 (not as faithfully later on because of quite bad lesions and burns), irinotecan chemo, and avastin every two weeks infusion since March until about Sept 4 when he had to stop chemo because he was going to have to have the Oomaya Shunt surgery -- so he was off chemo a total of about 7+ weeks and then had a new MRI before starting chemo again. He also had to be out of PT/OT to rest up after the shunt surgery so he became weaker (he is paralyzed on left side of body since his 2nd craniotomy). So the new MRI showed extreme progression -- new tumor in the other hemisphere - too large for gamma Knife -- also disease attached to the ventricles. Now it is a matter of time until the inevitable the NO says when asked. He said he is sorry that he had to be off chemo for the shunt -- this is exactly why I initially said no to the shunt process. I think the NO wasn't quite fully up front with us about this. He wanted to aspirate spinal fluid through this method rather than spinal taps because spinal taps can lead to infection -- well here we are with full blown new tumor! I can't say I am happy with our NO right now and have always been in the past. If feels like he was experimenting with Michael because Michael was/is his worse case of GBM. Experimenting without stating the facts to us. I previously told him I knew the GBM would grow even doubling in size every two weeks with no chemo. I told him also that I had read that Avastin when stopped can cause terrible migration of new tumor and was told not so.
The tumor board recommends 10 doses of radiation at a higher dose than when doing the standard 30 which he had a year ago.
He is unmethylated, has the Tp53 mutation, has the TERT mutation, and some other mutation (not very good prognosis from the start. They did not do genetic testing at all until just about the time progression appeared on the first MRI after radiation and temador were completed. I had to stomp my feet and scream (not literally) to get the testing done. I had to argue with the NO that temador doesn't work well for unmethylated. Of course the Gold Standard had to fail before non traditional agents could be tried.
So now we are down to starting radiation again that can certainly do more harm than good but also that could also do more good than harm I'm told. This is to prolong the inevitable the NO said. I would just like to know what I should absolutely be sure Michael is taking to help the radiation to do the most good.
Michael is experiencing significant mental confusion, disorientation to time and space, short term memory just not working -- all of this got really bad since last Tuesday when he had the topotecan for the first time through the Oomaya shunt. But he had been experiencing forgetfulness. For example: not remembering what city the NO is in and his own street address and such. But now it's really extreme. I had tried giving him DCA before the bad memory problems for only a total of about 8 days and because of confusion I felt I could not risk giving it to him. Though at this time I'd really like to give him the highest safe dose but am afraid to. I did not give DCA 8 days consecutively but rather 3 days and stopped and then 2 days and 2 days and finally decided it was too risky.
The last craniotomy that caused severe left side paralysis also caused blindness in the left visual fields of both eyes. But now his vision is getting blurry and he has been on chloroquine and accutane so am stopping those now just in case they are contributing to the blurry vision. He has a neuro oncologist who says his eyes are not affected by the chloroquine etc. But he doesn't seem really knowledgeable about these drugs. Since starting this post I received a note from Rich stating Chloroquine and Valproic acid should be used during radiation.
So bottom line is tell me what is important to make the radiation as effective as possible.
Thank you all.
Joan
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