I’ve barely visited this site since my wife passed in
August. My introductory post was:
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.
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
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
Hello, you are right. This is a terrible disease.
ReplyDeleteThank you for your reflections, which are very valuable.
Decadron is easily prescribed by the doctors, but certainly not always a solution for the patient.
As related to the immune system modulation with Opdivo, I believe that the immune system is more an on/off phenomenon, so that dose titration is not directly possible.
Avastin can indeed act as an anti-edema treatment in the context of immunotherapy, but remains having the risk for tumor cell migration/infiltration.
I am sure with all the efforts that you described here, you did all what was possible for a human to help your wife. This idea already will help you further in future to continue life.
Thank you indeed for sharing your experience. It is very valuable to us.
ReplyDeleteAs written above...thank you for sharing your experience and very sorry for your loss.
ReplyDeleteThank you for your very valuable insights.
ReplyDelete