Kudos and Hindsight's 20/20 Thoughts

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.

Suggestions?

Hi,

My dad is due to finish up his first round of TMZ and radiation on Wednesday. Over the last few weeks he has declined considerably. The nausea and vomiting kicked in and he is very weak. His balance and mobility are limited at best. He has been in a rehab facility for a few weeks because he fell at home and ended up there. We tried to get him back home last week, but he is unable to perform basic functions on his own and/or with help from my mom. There will be people (including the rest of us) stopping in to help him once he gets home, but it will not be consistent, so the two of them need to be able to manage.

At this point he is not taking much in terms of supplements because the nausea and lack of appetite prevent him from putting much in his mouth. He is also eating very little and nothing healthy.

Once the chemo and radiation end and the steroid stops (he is at 2mg as of tomorrow), I want to give him whatever I can to build up his strength and breathe some life into him. Any suggestions?

I know it will not happen over night and that there is no magic pill, but I want him to come home. He desperately needs to be at home, and he needs to build up his strength for that.

Thanks,
Stephanie