CBD + ALA combination (GBM)

Hi

Do you have any thoughts on combining CBD with alpha-lipoic acid (ALA)? I haven't found any specific research on a combination. I am particularly interested in IDH-wild



Also... I would like to link some interesting stuff :

Concomitant Treatment of Malignant Brain Tumours With CBD - A Case Series and Review of the Literature
https://pubmed.ncbi.nlm.nih.gov/31570484/
"a total of nine consecutive patients with brain tumours are described as case series; all patients received CBD in a daily dose of 400 mg concomitantly to the standard therapeutic procedure of maximal resection followed by radiochemotherapy. By the time of the submission of this article, all but one patient are still alive with a mean survival time of 22.3 months (range=7-47 months)".

Inhibition of autophagic flux differently modulates cannabidiol-induced death in 2D and 3D glioblastoma cell cultures
https://www.nature.com/articles/s41598-020-59468-4
(CBD + chloroquine + radiation)

RelA-activity is essential for Cannabidiol-mediated cytotoxicity
https://academic.oup.com/neuro-oncology/article-abstract/21/Supplement_6/vi70/5619524?redirectedFrom=fulltext (no full research report available)
"We observed therapeutic efficiency of CBD in a subset of GBM, obtained genetic markers indicating CBD-sensitive GBM and found that the p53 status segregated cell-death modes".

Additionally - if somebody is considering CBD, CBG, or FECO, there is a new report you might be interested in (sadly, no real specifics, that's commercial research):
https://thegreenfund.com/mcg-pharma-cannabinoid-formula-to-treat-glioblastoma

Alternative to Bosellia Wokvel?

I've seen previous posts explaining the rationale behind the recommendation of Boswellia (WokVel) preparation. However, this formulation is currently out of stock from all suppliers in my area (UK). I note from Ben Williams' book that the dose of boswellia used in the cited German trial (showing reduced oedema) was 4200 mg/day, which is much higher than the 999mg suggested on this site. What's the best alternative to WokVel, given that I am unable to source it? I assume that taking it alongside Celecoxib is tried-and-tested?

Cocktail approach during radiation

I am about to start radiation and temozolomide for the next 6 weeks and I'm not sure which specific drugs can be combined with TMZ during this stage. Can someone point me to a reference or if you have the knowledge on hand? I couldn't immediately find such a reference specifically for the radiation phase. 

My neurooncologist told me that I should be very careful about taking additional drugs during this radiation as different combinations don't have proven efficacy (TMZ may decrease in efficacy) and the toxicity of combinations can also be unknown. So I've looked into this, but I would appreciate any feedback. 

I understand that a different blog post (Rich cocktail), which might be a bit dated (3 years ago), is focused on treatment in general and not specifically for the phase of during radiation. 

Here is the list that I would like to try out during radiation. Is there anything you would add/modify? 

• Valproic acid (because I'm currently on Keppra, I may have to switch off of Keppra to take Valproic acid since I may not need multiple anti-seizure medications?)
• Metformin
• CBD Oil
• Iron supplement
• PSK 
• Alkylglycerols (possible liver side effects)
• Green tea
• selenium
• magnesium
• Boswellia serrata 
• Chloroquine phosphate

I'm MGMT unmethylated so I believe the TMZ efficacy doesn't seem as concerning. 

Treatment options post-RT/TMZ phase for IDH1 mutated, MGMT unmethylated GBM

Hi all,

I was diagnosed in late September with a GBM (frontal, left, with large cyst, IDH1 mutated, MGMT unmethylated), which was subsequently successfully operated (gross total resection) at the end of September. I guess as many/most here, I eventually stumbled across Ben William's book, the Glioblastoma Treatment options guide and ultimately this invaluable blog and community, which I have been studying and following closely since. I recently concluded the first phase of my treatment, following standard Stupp Protocol (6 weeks concomitant RT/TMZ) and am currently planning next steps (plus waiting for first post-RT MRI next week...).

While I did not get 'smart' in time to save my tumor material from being paraffined post-OP (unbelievably, this is still standard practice here in Germany in most hospitals), I did actively supplement my first phase of treatment with what I think is a reasonably aggressive 'cocktail' approach, including the following components:

--------------------------------------------------------------------------------------

Meds:
- Chloroquine, 1x 250mg
- Celebrex, 2x 200mg
- Disulfiram, 1x 250mg - 500mg (+4mg copper)
- Sativex (THC/CBD spray), ca. 3-4 sprays (approx. 15-20mg)

In general, I tolerated these medications without any major problems or side effects, with a few exceptions. Notably, towards the end of the treatment I developed some peripheral neuropathy in my left foot, which has now almost recovered, however (took around 3-4 weeks to recover). Nevertheless, it cause me to cease the Chloroquine and Disulfiram shortly before the end of my RT treatment phase. In addition, I found it a little hard to tolerate Sativex as I wasn't too keen on the psychoactive effect, which gave me some anxiety / mild panic attacks from time to time at night. As a result, I took it only for around 3 weeks or so.

Supplements:
- Berberine: 1000mg
- Boswellia Serrata: up to 4400mg (gradually increased dosage over course of RT to protect from Edema)
- CBD oil (8%), 5 drops (started after ceasing to take Sativex)
- PSP, 2100mg
- Curcumin (Longvida), 2000mg, increased to 3000mg towards end of treatment
- Green Tea Extract, 3625mg
- Lycopene, 20mg
- Matiake D-Fraction Pro, 65mg (3x 23 drops)
- Melatonin, 20mg
- Omega 3 DHA/EPA, 3528mg
- Probiotics, ca. 40bn units
- Pterstilbene, 250mg
- Resveratrol, 500mg
- Selenium, 200ug
- Silymarin, 1500mg
- Soy extract, 3750mg
- Vitamin D, 9000IU

In general, all of the above were well tolerated without side effects. I'd also like to mention I was able to avoid any kind of Edema / Cortisone use during my RT therapy, which I believe may have been at least in part facilitated by Boswellia in combination with Celebrex.


Other:
- Ketogenic diet, max 40 g Carbs per day; generally constant medium to high Ketone bodies when measuring. Started 1 week before RT, and continued to last day
- Caloric restriction, lost ca. 8 kilos in 6.5 weeks of RT, which I think equates approx. 600kcal or so in daily caloric restriction
- Daily morning smoothie, with variety of hopefully beneficial things like berries, broccoli sprouts, spirulina, tumeric powder, Matcha green tea, cocoa powder,  etc.
- Daily walks of ca. 1 hour to combat radiotherapy fatigue and keep fit

Ketogenic diet was somewhat difficult to maintain psychologically, but possible due to my partner's kind help in continuously seeking out new and often tasty dishes to keep things interesting. Caloric restriction much easier, since Temodal anyway caused me lack of appetite. I believe daily walks were very helpful to avoid RT fatigue, which affected me only in very minor way and much less than I expected.

--------------------------------------------------------------

NEXT STEPS & QUESTIONS

I am currently considering next steps, and having talked to various NOs and other Brain Tumor specialists, I am still not entirely convinced what the right way forward is. As expected, most doctors do not want to deviate from the Stupp Protocol (i.e. follow up the RT/TMZ phase with 6 months of 5/23 TMZ cycles). However, I am not convinced such a treatment would necessarily add much benefit in my case, since my tumor is MGMT unmethylated.

One of the leading specialists in Germany told me that the unmethylated MGMT status is irrelevant in the case of IDH1 mutated tumors like mine, since a study (NOA-4) showed that there was no significant difference in responsiveness  between MGMT methylated or unmethylated IDH1 tumors.

https://www.ncbi.nlm.nih.gov/pubmed/19901110

However, upon further research I stumbled across the following interesting study from China, which seems to suggest that IDH1 mutated tumors might in fact be particularly resistant to TMZ (3-10x more resistant in cell culture test). The study also notes that in China they observed relatively little additional benefit of TMZ cycles for the IDH1 mutated group of patients compared to RT alone, and the authors argue that survival benefits for IDH1 mutated tumors may simply be the result of a less invasive / more benign type of tumor relative to wildtype. It makes me wonder if the fact that MGMT doesn't seemingly play as big a role for IDH1 mutated tumors is simply the result of the fact that neither responds well to TMZ...:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4747376/

I'm therefore a bit hesitant to simply go ahead with TMZ therapy hoping for the best, and would like to consider other options.
One approach I am considering is Immunotherapy at the IOZK clinic in Cologne, which is not far from my house. However, because I don't have frozen tumor material, they would have to make a personalized vaccine using a liquid biopsy approach. This, in turn, could make the treatment even more unproven than vaccines anyway are even when made from tumor lysate. An additional option which could possible materialize down the road (but not yet, as no trials are running here presently to my knowledge) is to try to get hold of an IDH1 vaccine on a compassionate use basis.


My immediate next step is to see the MRI results next week, but I'd be very grateful for any advice on how to proceed from here. Especially, I'd like to try and resolve the following questions:

1. Would it be unwise to not do any additional TMZ cycles? Are there any obvious chemotherapy alternatives perhaps?

2. Would the immunotherapy using liquid biopsy at IOZK clinic be a good alternative for ongoing chemotherapy cycles? Would it be advisable to start this right away (i.e. without any additional TMZ cycles), or should I do some TMZ cycles first just to hedge my bets?

3. Any other recommendations in terms of maintenance strategies. E.g. what medication(s) could make a good maintenance therapy, without concurrent chemotherapy?


Thanks in advance for any comments, and wish you all a very happy and most importantly healthy 2018!

Best,
John

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.

Update Post Avastin, 18 months post diagnosis

My husband, diagnosed May 2015, with inoperable tumor in his right frontal lobe, had the usual radiation/temodar protocol, post radiation chemo only four months. Important to note; 60% of his brain was radiated because of the placement of the tumor(s). After much urging from his UCLA neuro-onc, he had four infusions of Avastin, starting end of August 2016. The results were not what we had hoped, he got weaker after each infusion, to the point that he was back in his wheelchair after being ambulatory post shunt in early July. He is just now clawing his way back from the effects of Avastin, which also include fatigue, and fogginess. It is too soon to tell if Avastin will have any beneficial effects for him. His post Avastin MRI showed a sizable reduction of his tumor and much less inflammation. It also showed possible necrosis.  Two weeks ago he had a major seizure, his neuro-onc can't explain it. I also asked my husband's neuro-onc if he was experiencing aphasia and her response said no, that the EEG showed a slowness of the brain. I'm not sure what that means.  I asked if conflating thoughts, ideas, imagining experiences that didn't occur, word confusion be defined as slowness? And doesn't an EEG just map one moment of time? Would the results of an EEG be different without medication, morning vs afternoon, etc? I need help understanding and also to set my expectations on remapping and what I thought was a pliable brain.  I thought these symptoms would have been a left temporal lobe issues, not right. Does anyone have a similar experience to share?
BTW, his tumor is MGMT methylated and IDH1 non-mutated.

Hi Everyone,

Thank you to Stephen for adding me to the forum. We very much appreciate a place where we can discuss things with likeminded people. My father (Adrian; 58, UK) was diagnosed with GBM at the beginning of May this year. He had total resection and has had no detrimental effects so far from either the GBM or the surgery. He is currently in week 4 of chemoradiation and we have started him on a cocktail of drugs after reading through information on this page, Stephen's page, and reviewing the literature (we have a science but not a medical background). We wanted to post our list in part to introduce ourselves and also to get any advice you guys may have. Dad's tumour is IDH1 negative. I post below what Dad is taking and post a couple of questions below. His GP is open to prescribing drugs if we provide him with some evidence of effectiveness. Thanks for taking a look.

Adrian’s Daily Cocktail (updated 20/07/2016, last few days of chemoradiotherapy)

Prescription while on Radio and Chemo therapy for 30 days:

Hydrochloride Dihydrate - Anti-Sick (Ondansetron 8mg tablet) started 1x morning, reduced to 1/2x morning
                        - 20/07/0216 stopped after 25 days caused constipation and minimal sickness feelings
Temozolomide (Temodal - Merck Sharp & Dohme 140mg capsule, BMI based dosage) 1x morning
Co-Trimoxazole (Anti-Biotic 480mg tablet) 1x morning every other day
Levetiracetam (Keppra 500mg tablet) was 1x morning and 1x evening, reduced mid term to 1x morning, and a week later reduced to 1/2x morning, recommended to stop(?)
                        - 20/07/2016 stopped after 20 days (as no fitting experienced)

Prescription Chemo therapy after Radiotherapy (expected):

Temozolomide (Temodal - Merck Sharp & Dohme 140mg capsule, BMI based dosage) 2x morning for 5 consecutive days every month following Radiotherapy

Ongoing Prescription by special request:

Celebrex (Pfizer 100mg capsule)    1x evening
Chloroquine (Avloclor - Alliance Pharma 250mg tablet) 1/2 tablet twice a week in morning (available off prescription)
Cholecalciferol 800IU (Fultium D3 - MA Hodder Internis, equiv. to 20 micrograms Vitamin D),   1x capsule in morning (available off prescription under other brands)

Ongoing Supplements:

Cannabinoids (CBD Brothers CBD Oil Blue Edition)    2x drop morning, noon and evening
Turkey Tail (Immune Support 500mg capsule)     3x morning and 3x evening
Melotonin (Eurovital 10mg tablet)     1x evening
Fish Oil (Omega 3 - Solgar 950mg capsule)     1x morning and 1x evening
Boswellia (Solgar capsule)     1x morning and 1x evening
Curcumin (Super Bio-Curcumin - LifeExtension 400mg capsule)    1x morning
Optimized Resveratrol (LifeExtension 250mg capsule)    1x morning
Berberine (Swanson 400mg capsule)     1x morning and 1x evening
Milk Thistle Fruits (Silamarie - Bio-Health 450mg capsule)   1x morning and 1x evening
Ashwagandha (Solgar 400mg capsule)   1x morning and 1x evening
Senna (Senokot - Reckitt Benckiser, 154mg tablet),    1-2 as required, evening, to offset Anti-Sick tablet constipation.


1) Is there anything else we should be taking at the moment or anything we have currently that we should be taking at higher dose or specific times of the day? He is having radiation late afternoon, Monday-Friday. Not being a medical expert I am wondering if we are covering enough bases or doubling up unnecessarily? Would be great to get a basic understanding of the processes so can get a better feel of the literature.

2) Should we stop taking levetiracetam completely at the moment as oncologist recommends?  I read one paper Kil et al 2011, that this drug may be helpful in sensitising the cancer cells during chemoradiation. I see also that is useful as a sensitiser when he will be on the high dose chemotherapy.


Thank you

Sam & Adrian

Vadym and Tania. Please, help start correctly!

Hello everybody!
Thank you, Stephen, for having added me-)
My name is Tanya, I'm from Ukraine, Kiev. My husband Vadim, 46 years old, has been operated glioblastoma and 28 March 2016. Now he  gets radiotherapy and temozolomide.
Please, help us in the development of a strategy for the further treatment of Vadym.
We have the results of histology and immunohistochemistry:
1.Histology.
this is a very cellular glial neoplasm consisting of pleomorphic, atypical gemistocytic astrocytes which diffusely infiltrate the cerebral cortex and subcortical white matter, forming secondary structures of Scherer. Mitotic figures, including atypical forms, are readily recognized, as well as prevascular lymphocytic infiltrates and foci of microvascular proliferation. In addition, there are large areas of confluent necrosis with early organisation and some trombotic blood vessels.
2.Immunohistochemistry:
ki-67 ( sp6)- positive tumor expression to 15 %
Bcl-2a Ab-1 (Clone 100/D5)- tumor expression weakly positive,
p53 ( clone Sp5) positive expression to 5 %/
And another part of brain (left temple)/
ki-67- positive expression to 5 %
CD 45/T200/LCA Ab-2 ( clone PD7/26/16 +2B11)- positive expression in abscess,
GFAP glial fibrillary Acidic Protein Ab-6(GFAP) positive expression.

Conclusion :
Pleomorfhic glioblastoma ( ki-67- to 15 %) with a plot of abscecc.
Our protocol:
radiation and TMZ 180 mg 1х per day.
1. Metformin 2,5 mg per day (1+0,5+1)
2.Chlorochine 250 mg х 1 per day,
3. Levetiracetam 1g х 2 per day ( he has no seasures),
4. Dexametaxone 2 mg ( we are going to replace it for boswellia)
Supplements:
1 Boswellia serrata 6 caps. per day ( 1500 mg) http://ua.iherb.com/Himalaya-Herbal-Healthcare-Boswellia-60-Veggie-Caps/3689
2. Boswellia serrata 6 caps. per day ( 600 mg) http://ua.iherb.com/Life-Extension-5-Lox-Inhibitor-with-ApresFlex-100-mg-60-Veggie-Caps/40487
3. Curcumin 2400 mg per day http://www.ourkidsasd.com/products/2510%7CEnhansa%20(enhanced%20absorption%20curcumin)-Lee%20Silsby
4. Milk Thistle 150 mg х 3 times per day http://ua.iherb.com/Jarrow-Formulas-Milk-Thistle-150-mg-200-Capsules/127
5.Maitake 3 pills х 2 times per day ( Maitake body powder 3600 mg, Maitake Fruiting Body Extract PD- Fraction 1440 mg ) http://ua.iherb.com/Grifron-Maitake-Mushroom-Wisdom-Maitake-D-Fraction-Pro-4X-120-Veggie-Tabs/17000
6. EGCg 3 capsules x 2 time per day ( 2400 mg) http://ua.iherb.com/Now-Foods-EGCg-Green-Tea-Extract-400-mg-180-Veggie-Caps/11598
7. Iron 1 capsule 25 mg per day http://ua.iherb.com/Solgar-Gentle-Iron-25-mg-180-Veggie-Caps/10625
8. DHA 500 mg per day ( we are going to increase).

My most important question is, what can i add to protocol during radiotherapy?
Are the supplements, my husband takes, permissible with radiotherapy?


I would be wery gratefull for any your comments!
I wish you all good health! Thank you and especially to Stephen!
PS. Excuse me, please, for my english....it is wooden.
Tania.

Radiation 60% of Brain

My husband was diagnosed May 1, 2015, with GBM, right frontal-lobe and had 60% of his head radiated under the usual protocol of 30 days + chemo. One year out, and though his tumor(s) are stable, his deficits seem to be more pronounced. I was wondering if there is anyone here with similar, right frontal lobe, lots of brain mass radiated, who could tell me what to except one year out with this level of radiation. I know radiation impacts good brain cells, but is it permanent, and is there anything that could be done to rebuild. So far cognitive therapy hasn't worked much.

Keppra and Temozolomide

Hi Everyone!

I'm new to this blog. I've read many posts and this is a great help to me, as I'm a beginner in the drug coctail treatment.

Our story briefly:
1) My father, 55, was diagnosed with an unknown brain tumor in October 2015 (the biggest dimension 43 mm). Craniotomy was carried out 3 days after the diagnosis. Preliminary histopathology - astrocytoma III, final result - glioblastoma IV.
2) First MRI after the surgery in December, right before chemoradiation, showed still a big tumour. According to the oncologist - radical recurrence. According to another neurosurgeon (we consulted the MR image in another hospital) - first craniotomy improperly done (!!). I'm not sure who's right... the other neurosurgeon, specialized in gliomas, was very convincing.
3) We decided for another surgery (by another surgeon). The resection must have been deeper as afterwards my dad's sight is worse (he sees everything darker, has problems with reading, seeing details etc., however he's getting better, it's been 6.5 weeks since the surgery).
4) Now chemoradiation. First cycle of Temodal during radiation for 42 days on a daily basis.
5) Tumour unmethylated, IDH1 negative. Other genetical tests of a frozen sample in progress.

We are at the very beginning of the drug&supplements treatment. It's very difficult to collect all the prescribed drugs. We're located in Poland. Started like that:
Temodal (150 mg/day);
Depakine (valproic acid) 2x500mg/day- prescribed by the neurosurgeon to prevent seizures;
Keppra (will start tomorrow, 2x500 mg/day)- added in order to sensitize the tumour for TMZ (prescribed by our GP on request, she agreed);
Dexamethasone (2 mg/day);
Proton pump inhibitor (1x/day) - drug called IPP20 in Poland;
"Pheonix tears" with high THC and CBD (rectal application) - 2 ml/day
Curcumin (up to 3000mg/day)
Quercetin
Vitamin C (1000 mg/day)
Sugar-free diet and radical reduction of meat. Working on reduction of gluten.


I have one question and would be grateful if anyone could advise sth:
What would be the best scheme of taking Keppra to sensitize the tumour for TMZ. Does it matter, if the first doze (500mg) is taken with Temodal on an empty stomach or he can take it later, after his daily radiation (with a meal afterwards)?
Should we add Prozac and Disulfiram, apart from Keppra, for a better chance of TMZ working?


Cheers!
Piotr

What drugs/supplements are important to take during radiation?

After going to Dana Farber and Memorial Sloan Kettering we decided to go with radiation (for the second time) and continue on TMZ. We did have an apto with CTCA but will be canceling that. Here is a little background as this might help others in similar situation.
Husband at age 28 was diagnosed 5 years ago with oligoastrocytoma grade III debatable to be grade IV (left frontal lobe). MGMT status, IDH 1 mutation, some amplification of EGFR but NOT the V3 mutation, and loss of 19q but NOT 1p (more astrocytoma behavior). Had part of left frontal lobe resected, did radiation w/ low daily dose of TMZ, had a month off from treatment then took TMZ 5/23 schedule for 1 year. Tumor went into remission. 4.5 years later (July/15) MRI revealed aggressive tumor growth going from left frontal lobe to right frontal lobe (it looked huge to me). I was desperate and started researching online, found out about Ben Williams and Cheryl Broyles, which led me to this blog eventually. The only option was trying to get into a clinical trial or do Avastin (at that tie we did not have the genetic testing done). Once we found out the MGMT status we just went for the solo treatment of TMZ 5/23 as my husband was declining (sleeping most of the day, forgetting what we did on that day, having more headaches). I started him on many supplements and a few drugs as they are hard to obtain (I'm listing his cocktail below). I also want to mention that we have been praying a lot and asking God for guidance, which in some cases he answered my questions just like I asked. My husband started TMZ in august and had MRI every two months which showed amazing results each time. If I have to picture the results, it's like being an orange transformed into average size strawberry (sorry I do not know the measurements). Then january's MRI revealed a new tumor growth (like a small grape) on the right side behind the old tumor. The old tumor still showed decrease in size. His TMZ cycle was placed on hold which scares me, but they said we needed to figure out what we wanted first. There are no spots for him for clinical trials right now according to Dana Farber, Memorial Sloan Kettering and Duke. One place said they can do radio-fraction radiation to the whole area (not just the new tumor) for 10-15 days and continue on low dose TMZ, BCNU, CCNU or PCV. They prefer to radiate the whole area because it's been almost 5 years since last radiation. Another place said that radiating the whole area could cause more harm then good, so they prefer radiating the new tumor only with TMZ low daily dose as this can act as a sensitizer to radiation and it has continued to work with the other tumor. Very confusing specially when we don't know anything about that, so I'm hoping that they choose whats best according to their expertise. I did ask about off label meds and of course no one is in favor of that telling me that there is no evidence or studies done in human, etc. They did mention the immune therapy drug but told me insurances may not approve the drug because it's extremely expensive. One of the NO was ok with taking all of the supplements but did tell me NOT to have him take any antioxidants during radiation because it can work against radiation and in favor of the cancer cells.
So what do you all know about antioxidants during radiation?? Has anyone taken any supplements during the radiation? I don't want to give my husband things that can potentially interfere or work against the treatment. I want to do whatever may help his radiation and TMZ work better. I might not be able to get some or any drugs that are helpful but I have to try it!

Can anyone tell me what drugs/supplements to take during radiation and TMZ and what drugs/supplements NOT to take it?? I'm trying to put together a cocktail approach for this new treatment approach. I'm forever grateful for any info/help anyone can provide. I know that for some doctors our loved ones are just a number, another unlucky patient, but for me my husband and my two children are all I got here and I just have do everything in my power to keep him with us longer. I know that God is in control of everything but we have to our part too. The night before his MRI I actually dreamed exactly what happened, we were in the office with the doctor and she pulled the images and told us that the MRI showed a new tumor. Everything happened the same way, even how she told us. I woke up at 4:20am , got on my knees and prayed. Told my husband that I was concerned about his MRI and told him about my dream before we left the house. I feel that God was warning me, to prepare myself so I wouldn't get desperate. And it worked! I was disappointed but I felt that maybe we can beat this too.

Sorry for the long post and thank you in advance for your input. Below is my husband's cocktail approach while he was on TMZ solo.

 Vit D 5000 u once daily

Genistein 125mg every other day
Milk Thistle 250mg twice daily,   now on 750mg daily
Fish oil 5000mg divided in 2 doses daily
Lycopene 20mg daily
Green tea Extract 750mg twice daily
 Trans Resveratrol 250mg twice daily 
CoQ10 200mg twice daily
Garlic 600mg daily
Boswellia 400 mg twice daily
Curcumin 400mg twice daily
Quercetin 200 mg twice daily
Bromelain 200mg twice daily (to help absorb curcumin)
Anti Fatigue complex daily (w/ vit D, Mag, Selenium, ALC, ALA)
Multivitamin daily
Coriolus versicolor 1800mg nightly from mushroom science
Melatonin 20mg nightly

TMZ 450mg 5 days on/ 23 days off
Keppra 500mg twice daily for seizure (had 2 in the past)
Metformin ER 1000mg daily as off label 
Omeprazole 20 mg daily (40mg twice daily 3 days before TMZ until 2 days after) as off label
Simvastatin 20mg daily as off label, but his cholesterol was high when we checked
Celebrex 200mg daily  as off label (was not faithful to this one because of his drops in PLT) taking it daily now while he is off chemo and plan on keeping it that way.

What am I missing that is very important?? I know I need to get CBD/THC but that's illegal here so not sure how to get it.