I lost my dear husband after 32 years of marriage to a GBM that his
colleagues at MD Anderson recognized as so genetically virulent, they
did not give him more than a few months, at most, after diagnosis. I
will never forget sitting in a room, surrounded by the large group of
oncologists who were his close friends, waiting on the results and then
seeing them cry as his case was discussed.
Against their
wishes, we started him on a course of supplements to accompany the chemo
and radiation. It included pycnogenol, cannabis oil, curcumin,
Leukozepin, Vit. D, turkey tail mushrooms, boswellia, artemisinin, and
more, plus organic smoothies. He had 2-3 acupuncture treatments per
week. It caused an uproar. He was a traitor to modern science. Every
consult was a battle. Didn't we realize that free radicals were our
FRIENDS?? And we would answer back our retort, and they would argue back
theirs. It was awful...the whole experience was a nightmare because he
dared to think outside the box and at MD Anderson's Dept. of
Neuro-oncology, that is a sin. There were times the pressure was so great, he actually stopped the supplements for awhile, or stopped some of them. And did it help? No. The tumor took advantage of the "rest" it got and grew even faster. So he'd go back on them, having lost ground.
He was even ok'd for a
clinical trial as n-of-1, with the supplements having been ok'd by the
principal investigator, but the head of the NO department said that no
one would go on any trial in his department as long as the patient took
supplements, not even a pre-approved n-of-1. The fact that my husband
had been a researcher "in the family" for 30 years, who had done his due
diligence, and made the decision to go forward, meant nothing. And as
the department head made this proclamation, he smiled a Mona Lisa smile
that said, "It doesn't matter, you know, you are going to die before
long anyway."
It is something I will never forgive.
My
husband lived almost a year after his diagnosis, to the surprise of all
who knew his profile. And in the last few months, I have relived every
decision we made along the way. May I share my hindsight with you?
Who knows, it might help someone.
1. First of all,
kudos to Stephen and the rest of you, for asking so many questions and
thinking of novels ways to attack this monster. If the NOs won't think
outside the box for all of the
insurance/funding/politics/training/messy-science/too-many-variables
reasons, then we are on our own. Keep it up. This is a
glioblastoma...time for a new paradigm, folks.
2. If
we had to do it all over again, he'd have gone through the resection,
but not the radiation. The only thing the radiation did was to make the
beast bigger. Yes, it was floppy and full of holes. But it was
MGMT-promoter gene unmethylated. That radiation + Temodar just kicked
it in the shins a little. When that -blastoma beast regained its
strength and got back to the business of evolving, it handily filled in
those holes and started to grow again with newer, more efficient
angiogenic pathways, but now
starting from the larger border! And with each new chemo agent, it created another new angiogenic pathway that was even better than the one before. In what universe is this a good idea?
3.
We would have started him on all of his supplements, immediately after
the resection, especially cannabis. You can get it, you just have to
try. Go to the Facebook GBM cannabis blog and put it out there...
hey! I'm in an illegal state! Help me, please???
and you will be helped. But get someone to tell you how to dose it.
We were conservative Repubs at the time and didn't know the first thing
about CO. We finally consulted, via FaceTime, with Eloise at Green Health
Consultants and she did her best but it was too little too late.
4.
Start on Optune when the tumor is small, not when it is really big like
we did. In Houston, you will have to go to Methodist Hospital to do
this. Husband's new NO, Dr. Ivo Tremont-Lukats, was trained at MD
Anderson and is willing to let you use whatever supplements you want.
He's a gem.
5. Because Husband's tumor's
MGMT-promoter gene was unmethylated, we would have gotten him on
disulfiram asap, to take along with the Temodar. I did get some on the
black market about mid-way through but it arrived two years out of
date. Dr. Tremont was willing to let my husband have a Hail-Mary trial
of it toward the end, but by then the tumor had covered most of his
brain and was creeping down his spine. Like I said, it was especially
virulent. Had his NO at MD Anderson been willing to write a legitimate
RX for it after the resection, when that puppy was the size of a peanut,
I really think my husband might've had a chance to stop, or at least slow down, its regrowth.
And every time he took Temodar after that, he would have needed to take
the disulfiram at the same time. That, along with the carpet bomb effect of the supplements and Optune, would have given him better odds than what we were dealt at MD Anderson, I'm convinced.
That's it. That's all
I have to offer. My rage at the medical establishment is something I
will be working on for a long time. I have a couple wonderful of
"forgiveness" counselors who are helping me with this via phone sessions
and I am slowly getting better, I think.
Best of luck to you and may
our Lord bless you and keep you in His hands.
