Tuesday, 25 July 2017

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.


  1. I am so terribly sorry for your loss and for what you went through.
    I'm sorry i don't know your name so I could be more personable. :(

    We are fighting the same battle and there are times I think I should stop with the medication but after reading your post I will not do this.

    I am going to stay on the medication. Thank you for helping me in a way you may never know about.

    God bless you and your husband.

  2. condolences,
    I am sorry to hear what you went through. :(

  3. Your second point is a potential very important one. There is an abstract case report from an adult treated with multimodal immunotherapy after complete resection of GBM, showing long disease-free survival. Maybe we have indeed to re-consider the antitumoral weapons in function of the concrete situation. If the body gets control with help of immunotherapy, then we can spare the radiotherapy for later if needed, meanwhile gaining life time with good quality of life.

  4. Thank you so much for sharing. My husband is 5 months out and we are doing many of the things you have mentioned although he feels like a lab experiment. I agonized over the decision about radiation and Temodar for the same reasons you had concerns. My husband is also unmethylated. In the end I was too scared not to do radiation. I am still questioning the adjuvant TMZ. He is about to start his second round. We will be adding the disulfiram and copper. He has been very tired and dizzy and sleeping much of the day in the last two weeks and I am constantly weighing quality of life as many of the additional treatments have their own negatives. Thanks again for sharing. You did the best you could as we all are and the more I read and am a part of this community the more I believe that it is all rather random. Our NO is supportive enough of our trying other treatments and believes that the future will be more multi-targeted and I sense that he is frustrated by what he can offer.

  5. Many thanks for all of your comments and love. Jacki...Do Not Give Up. Take everything you can think of. There is nowhere to go but up. As we said to the nay-sayers at Anderson, who argued that one of the snake oils might be negating one or more of the other snake oils, So? You have a better idea? Let's hear it!

    Dianne and SVG, you have hit upon an aspect I neglected to mention: quality of life. The radiation that only aided the beast's growth in the long run also robbed my husband of the ability to read. Think about this...a 62 year old medical researcher at a top cancer institute became a functioning illiterate. There is only one word to describe it: cruel. As he tried in vain to write out the alphabet, tears would run down his cheeks, and I would feel so much rage at the arrogant radiologist who gave us such attitude if I dared to question anything, that if she had been in the room at the time, it would have been hard not to deck her. After the radiation, he fell into such a depression, he was in his own, personal hell. I hasten to add that not all patients end up with such severe radiation brain, but if a tumor is unmethylated, and the doc has no intention of aiding the Temo uptake with p-53 nanoparticles (the n-of-1 trial) or disulfiram, why risk it at all?

    One of my biggest regrets, Dianne, is that I did not do the best I could. I felt in my gut that radiology was not the way to go and I let myself be bowled over by the assertiveness of those like that radiologist. I could be a pretty strong advocate for my husband, and yet I chose their advice over my gut instincts. Man, if I could do it all over again, I'd listen to that gut and we would have walked out.

  6. First of all my condolences and thoughts go out to you and your family

    This post really rings close to home, my father was recently diagnosed and I took my entire family (father, mother, brother and uncle) down to Houston. I had done tons of homework in prep for the MD Anderson meeting I wanted to create a cocktail approach to combat the tumor. I was floored during our appointment when every idea and question I had about any medicine or supplement that was outside of the box got thwarted by the NO.

    The hardest thing was to fight to win back the trust from my family in wanting to try a cocktail approach - I have convinced my dad to switch to a local NO who is doing SOC + some additional meds, supplements and diet and is very open, it was extremely hard on me because in my mind (being a physician myself) I kept thinking 'am I really going against MD Anderson?'

    know that this post has resonated with me and I appreciate and will use your advice.

    1. I know of one patient, whose father was a regular poster here and at the old cancer compass cocktail thread, who eventually left MD Anderson and sought care elsewhere because of the closed attitude towards the cocktail approach they found there.

      "My son is seen at MD Anderson and our experience is their collective mindset is one of standard of care only. I have heard this from two others as well, involving different NO. Our NO is anti Optune, anti supplements, anti drug cocktails. He is a smart guy, but if you are looking for approaches other than standard of care, MD Anderson might not be the place to go. It is possible of course that other NO at MD Anderson have a different point of view. We wanted to maintain our relationship with MD Anderson, but we have seen other NO for Optune, and a family practice MD for our drug cocktail."


    2. The above was then confirmed by another caregiver "RE MD Anderson....For GBM you won't get anything but standard of care, no novocure and no cocktail approach..."

      And from the same source: "It is true, MD Anderson just will not support novocure use. That's what we were told while there in Dec. and Jan."

      This was in 2015, and 'novocure' is of course referring to the Optune device.

    3. yes Stephen that was my experience as well - now don't get me wrong the NO Fellow and MD were extremely caring and all the staff treated us very well. They mobilized and set up the appointment rapidly and even a rad-onc doc took time out of his day to call my dad that day and the next and just chat with him about radiation (even though at that point we had decided not to go with MD Anderson - though initially this was just d/t geographic reasons)

      I can confirm optune was balked at - though they did offer to write the script just didn't recommend it.

  7. Thanks so much for that, Chris. Since you are an MD, let me get a little more specific. My husband read - and after the radiation, listened to me read - many research papers. He was brutal about his requirements for a "valid", well-run research project. It could not come from certain countries whose researchers' findings he didn't trust. It could not be in vitro unless it was followed up with in vivo studies and even then, he wanted to see results on at least primates, if not humans. Forget murine studies...he'd say, "We've cured cancer in mice hundreds of times."

    I read to him for hours and hours, every single page of projects he chose to learn about. There was not a thing on his regimen of supplements that he put on willy-nilly. That the docs dismissed his decision to add these things as a desperate act of taking snake oils was just galling.

    Of all of the things that he took, four stand out as absolutely essential, in my mind:

    1. Cannabis oil. He hated cannabis oil, or rather, THC. Type A personalities often experience dysphoria, not euphoria, with THC and such was the case with him. Dosing him was really hard. While he was taking close to the full dose of it, though, his tumor slowed to almost a halt. The reason he had to stop was that he accidentally hit his head while playing with the dog, and that started a cascade of swelling and complications which ended with him being admitted to the hospital. I was too afraid to smuggle it in there...who would take care of him if I were in jail? The CBD is legal, though, and we used it to control his seizures all the way to the end. It is a miracle plant and if we could have grown it and given it to him fresh, it would have been perfect as it's not psychoactive if eaten raw, like a salad. We did not have time to get him back to full THC dose before he died, because of complications from the meds he took to control his brain swelling from the hit.

    2. Pycnogenol cancer cocktail: saturation dose of pyc + 1,400-1,500mg shark liver oil. He had recommended this cocktail to many people with non-brain cancers with very good results. The radiologist argued vehemently against taking a free-radical scavenger while getting radiation because, and I quote, "free radicals are our friends." Uh huh. If we had to do it all over, he said unequivocally that he would not have listened to her. We both think the free radical build-up in his brain is what hurt him so badly. And it did nothing to the damn tumor. He would have let the Xrays hit the tumor and flare, let the free radicals do their job, then scavenged them later in the day by taking the pycnogenol and a combo antioxidant pill that has Vits. A, E, C, zinc and bioflavanoids.

    3. Artemisinin: There is very compelling research on this plant extract. His acupuncturist (also an MD) had experience with cancer remission in her patients who took this along with other traditional Chinese medicine herbs.

    4. Leucozepine: This is a proprietary mix of various herbs and vitamins that shore up the body to help it stay as healthy as possible. His daily fruit and veggie smoothies and juices always contained some Leucozepine, and his blood work was amazing up to the hit on the head. Platelets - perfect, RBC/WBC counts - perfect. Clinically, he presented like a healthy fellow to the absolute amazement of his docs. Yet, when he said, look there really is something to this supplement regimen I'm on, their minds shut like a steel door. You could see it on their faces. They would rather believe he was some kind of walking miracle than attribute his health to his special diet of anti-cancer foods and supplements. In-blinking-credible.

    1. Well from the bottom of my heart thank you for sharing your experience and thoughts - I will bring all of not most of those into my father's cocktail. I think the THC/CBD oils are going to be the most difficult to convince him to take because of the stigma around them however his NO is very forward thinking and I think he will like the data.

    2. You may have seen this already, but THC/CBD oral spray (Sativex) actually now has clinical trial data to support its use for GBM, which might help convince his NO.


    3. ill forward that to my dad - just to clarify my NO is not against it my father the patient is (however he is a physician as well so whenever presented with data he has been coming around)

      thanks so much Stephen

    4. SJ Firinne, thank you for your response and PLEASE do not beat yourself up. You did do the best you could. We are all doing the best we can given the information we have which is not much. It is a huge and heavy responsibility. We will never know what would have happened it we didn't do something or did do something else. We cannot know and we can think there would have been a different outcome if only...but don't do that to yourself. You are only human and you did the best you could.

      I am still agonizing over the TMZ question. We meet with his NO tomorrow and I am going to bring up going to a metronomic schedule. I will have to do some more reading on the last few treatments you mentioned, pycnogenol, artemisinin and leucozepine. None of those have been in my radar. Thanks again for your hindsight and 20/20 to help guide us. Take care.

  8. Dianne and Chris, how is it going?

    1. Hi there, I don't know how I stumbled upon your inquiry as I have not seen on this forum how to follow but I did and was thinking of you as well as we were at MD Anderson last week for a consult and we were interested in the Val-83 trial. Tim's MRI on 11/9 showed recurrence in a nearby area to his resection and he had been having some minor symptoms so we weren't surprised although we were dismayed because he had been doing so well and we were beginning to have hope. We have done all the things you mentioned above as early as we could and yet here we are. At MD they offered the Val-83, Abemaciclib and a LIIT trial. We are now at Duke and we think he is eligible for the modified polio virus trial and if all goes as planned we are planning to enroll as it sounds promising, it is a different type of solution, it is only one injection. The trial is actually randomized, half the patients will receive one dose of Lomustine as well, 8 weeks after the injection. If we do this and it doesn't work some of the other trials or drugs may still be options.Thanks for inquiring. Peace.

    2. Hi Dianne, thanks for the update, though I am heartsick to hear about the recurrence. I have some questions, if you don't mind answering when it's convenient? Did Tim take the disulfiram along with the Temodar? Did you try the cannabis oils? Was he ever on Avastin? And which supplements is he on?

    3. Dear SJFirinne
      Firstly my deepest condolences for your loss, and i think like all people on this site we have a definite understanding of just how frustrating and lonely this torturous road of cancer is.
      I also think it is even harder at times being a carer in this situation and having to watch what is happening to someone you love while continuously being confronted with barriers to make hopeless situations even worse.
      My daughter was diagnosed late 2016 and we also followed recommendations for standard care of Radiation and Temodar following total resection.
      Unfortunately we didn't know any different and to be honest i had not even heard the term Glioblastoma.
      We live in a small town in Australia and experience the same tunnel vision from the cancer institutions here when it comes to mentioning anything outside of the square other than the prospects of clinical trials.
      Unfortunately, there are no current clinical trials available here, so we have traveled extensively pursuing any available options for her.
      This led us to a vaccine trial in Buffalo NY in Jan 17 which unfortunately did not work for her, then to Hamburg Germany for Hypothermia treatments before returning to Australia.
      We thought we had this thing in some sort of control until late September 17 when she began experiencing severe headache and nausea.
      It was back and very aggressive.
      Then we found this site, and although terrified, we have followed others shared experiences and trials, and although this tumor is still very much there, we have at least managed some form of containment with her last 4 (monthly) MRI's showing no further progression.
      Previous replies continually point out MD Andersons dis approval of the Optune device.
      While on my travels in search of possible trials i met with the staff at Lennox Hill in new York who were a strong advocate for Optune and gave me as much information on its use and availability.
      Lennox Hill were unable to offer there trial for intra-arterial Avastin as they believed from the scans that i took with me, that she was not in a safe state for a long haul flight, and of course the fact that my daughter had no US health insurance only heightened the risk if things went wrong.
      Unfortunately Optune is still not available in Australia as yet.
      John Bookvar is the Neuro-oncologist that i met, and although her condition and timing didn't eventuate to treatment, there was something about the whole meeting that left me with hope.
      If by chance we do end up back in the US for further treatment, John Bookvar would probably be the person i would first contact.
      I will definitely pursue the supplements that you have listed ans also the Sativex spray that Stephen added in his comment.
      Anyway, i hope this has not been too long and drawn out because what i started out to say when i replied to your post was;
      Thank you, its the likes of people such as yourself that keeps people like us in the fight.
      Take care

  9. Martin,

    Thank you for your kind words and best of luck in your fight. I commend you on your travels, searching for a cure. It is that kind of determination that will best serve your daughter. I very much regret not packing up my husband and taking him to see one of the doctors on the West Coast of the US who are comfortable dosing cannibis oil. Since my husband was MGMT promoter gene unmethylated, there was no reason not to. I'm in Texas, an illegal state, but if I were in California, I'd invite you and your daughter to come stay. Don't give up thinking outside the box. We HAVE to think outside the box. We have no choice.

  10. One more thought for Martin. I found this video made by a lady on your side of the pond and wonder if we had tried this method, would my husband have been able to tolerate the full dose of CO? It was helping, up to the point where he hit his head and had to take the Avastin, but he hated the loopy feeling so much, he never got to full dose. I know that sublingually is supposed to be the only way to go for a GBM, but what is better...1/2 dose sublingually or full dose rectally? Here is her remarkable story: https://youtu.be/-hUoyXKf81c The Avastin, by the way, promoted the formation of a satellite tumor in his frontal lobe. One of his colleagues found this out and told me on the QT that he had stopped even considering Avastin, for this and other, very serious reasons. And I thought, great, you tell me this NOW? Geez.

    1. Thank you SJ
      I just tried the link but im thinking i might need a youtube account and i am not the most computer savvy with that kind of stuff, but i will get one of my daughters to look at it for me tonight.
      We are an illegal country but i know people are obtaining CO without to much fuss, and anyway a stint in jail couldn't possibly be worse than the current situation.
      I sincerely appreciate the offer to stay if you were in California, and we may well of taken you up on it had that been the case.
      I know the US fairly well as we actually bought a small cattle farm in Tennessee back in 2011, but have not spent hardly any time there since this thing started.
      If you don't mind me asking, what was the symptoms related to your husbands satellite tumor?
      My daughters left side mobility has become extremely weak, and has deteriorated noticeably week by week over the past two months.
      Her oncologist seems almost confused as her MRI's keep coming back as no further disease progression.
      It made me wonder whether your husband experienced any difficulty in walking as a result of the satellite tumor?
      As we have all experienced, i am unable to tell her of the alternate drugs and supplements that Stephanie is on, as i know she would probably refuse to treat her, so i remain silent.
      Due to her already pre-determined prognosis, we have our MRI's done in the private sector at our expense.
      Because of the same prognosis she either can't or won't refer her scans to a neurologist for review,(waste of government money) so i guess i rely on the bits i can understand from the radiologist report.
      I will probably have to travel to another state and engage a neurologist privately.
      Not insurmountable, just another hurdle i guess.
      Take care

  11. Oh dear, I'm so sorry to hear about this! I don't recall any symptoms as a result of the satellite tumor. In fact, he was doing so well, we were upbeat enough to think the scan would show a shrinking of the main tumor. Seeing that little blip in his frontal cortex was like a sock in the stomach. We had NEVER been told it was starting to look like Avastin caused satellite tumors. That was somewhat new to the scene but not so new that his buddies didn't know about it. The Dept. of NO at MD Anderson is not quick to react, not quick to adjust, not quick to accept anything. Where other depts are understandably "cautious", the NO dept is more like quagmired in "that's how we've always done it", even when "it" ends in death 100% of the time. Thankfully other depts there are not as hard-headed.

    I must be honest about the CO's effects on my husband, though, and it sort of mirrors what you are seeing in your daughter. It did make him fatigued and unsteady because even though most of the THC was given at night, in the morning he was still loopy, and at least a little bit of THC had to be given during the day too. As soon as he got used to a dose, too, I'd increase it a bit, trying to get to the recommended dose for his GBM. That was slow and difficult, and made more difficult by the fact that I'm allergic to it. Cannabis is rich in hevein, the protein found in latex that makes me itch and break out in eczema.

    He never had one-sided weakness but because his tumor was in his left parietal lobe, his deficit was in finding his words. Then, after radiation, he was completely illiterate, not able to either read nor write.

    I seriously considered taking my husband to see Dr. Courtney who advocates eating cannabis raw, like a salad. Then it has zero pychoactivity. Here is another link for your YouTube-savvy daughter: https://www.youtube.com/watch?v=DE4pK0U4NJo&feature=share&app=desktop

    Yes, another hurdle, then another...I so understand. People ask how we can just keep going and I know the answer is, How can we not? Go Dad, go.