GBM case, debrief

I’ve barely visited this site since my wife passed in August.  My introductory post was:

http://btcocktails.blogspot.com/2016/06/introduction-and-introductory-thoughts.html

There may be lessons or clues to share that could be of use to others. 

Diagnosed with L tempo-parietal 4cm GBM 5/16 after a stroke-like episode.

Gross total resection, with near-total resolution of all symptoms.

Stupp protocol of radiation+temozolamide.  Poor tolerance of TMZ.

Experimental Nivolumab/Opdivo.  Tolerated well at first. 

Follow-up MRI showed severe cerebral edema of much of the L hemisphere.  Clearly an Opdivo effect.

This necessitated halting Opdivo.  Avastin/Bevacizumab produced dramatic, immediate improvement in cerebral edema, far more effective than Decadron, which had to this point had little apparent effect on edema.

Avastin was well-tolerated initially, but after 3+ doses at q 2w intervals, started to suffer abdominal symptoms.

Recurrence diagnosed 4//17.  Almost got into an NIH CAR-T trial, but deteriorated too quickly to qualify.

https://clinicaltrials.gov/ct2/show/NCT01454596

Steady downhill course after that, ending in home hospice care. 

Throughout this time, I gave a supplement cocktail roughly equivalent to Ben Williams’:
http://btcocktails.blogspot.com/2015/07/ben-williams-supplement-list-for.html

Plus ketogenic diet.

One possibly useful addition was Celebrex.  In addition to anti-tumor properties, I note that animal studies show comparable effectiveness of NSAIDs and decadron for cerebral edema.  No oncologist is going to use Celebrex instead of decacron for this purpose, because of lack of human trials.  But we’re all going somewhat off-script here already anyway.

My strong impression (from this N-of-one study) is that during the time she was on the full cocktail and NOT on decadron, there was little or no sign of progression. 

My impression is that Avastin didn’t accelerate her course directly, but that it led to GI symptoms that made her tolerate poorly all the supplements I wanted to give her.  I believe progression accelerated off the cocktail.

My impression also is that Decadron helped little with any of her signs or symptoms, but it caused terrible side effects and (I believe) faster progression.  She developed some psychotic symptoms at a dose of 4mg/d of decadron.

We didn’t do genetic studies (beyond methylation status) on the tumor.  Money was tight and (given the typical genetic heterogeneity of GBM), I’m skeptical that gene-specific approaches are likely to yield more than a few weeks of added survival.

Checkpoint inhibition seemed to have potent effects.  It would seem careful dose titration against cerebral edema effects may be important.  Alas, dose titration wasn’t possible on the study protocol—all or nothing only.  Avastin might prove a useful treatment for resultant cerebral edema in other cases.  But I’d recommend shorter-term use of Avastin, primarily to treat edema.

We were lucky to have long-term care insurance to help with caregiving in home hospice.  We were also lucky to have supportive friends and family.  This is a phenomenally expensive disease to manage--financially and emotionally.  Her passing was ultimately about as humane as it could possibly be.  She is missed.

Best wishes to all,

Steve