Thursday 7 July 2016

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

3 comments:

  1. Hi Sam - and welcome to the group. Wow -- you certainly are on top of it and have taken this bull by the horns. Your Dad is lucky to have you a "PCP" :-) and an advocate. I'm glad to hear that you Doctor is open-minded - I"m curious to know if he is aware of your full cocktail and has given it an OK.

    My wife is a little hesitant to jump on the cocktail bandwagon but I'm trying to start her off with curucmin (RevGenetics' MetaCurcumin Maximum Strength - supposedly the best out there for bio-availability, which from what I've read is a key factor in gaining curcumin's benefit).

    With regard to the Keppra - I'm assuming your Dad is taking it for seizures -- so if that's a concern I would continue taking it. I also read the same paper on it's positive effect on chemo.

    Be sure to stay in touch as things progress -- we all learn from each other. Wishing your Dad the best.

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  2. Welcome Sam,

    Is the 1000 mg Celebrex a typo? I've not heard of such a large capsule size for Celebrex. Most people using Celebrex off-label are taking 200 mg, 1-3 times daily.

    The clinical trials with chloroquine for GBM used a dose of 150 mg chloroquine every day. 250 mg chloroquine phosphate (Avloclor etc) contains 150 mg chloroquine and that is the dose most people are using for GBM.

    A blood test for 25-hydroxycholecalciferol (calcifediol, calcidiol) might be useful as a baseline measure.

    If he is willing to do any dietary interventions, during radiation might be the best time to do it. Ketogenic diet + radiation was extremely potent in a mouse glioma model.

    http://astrocytomaoptions.com/radiation/

    There is not only preclinical evidence in support of Keppra, but also a retrospective study to support its use during monthly TMZ cycles.

    http://www.ncbi.nlm.nih.gov/pubmed/25975354

    A new large retrospective study by Happold, Weller, et al. [http://www.ncbi.nlm.nih.gov/pubmed/26786929] disputes the benefit of valproic acid and levetiracetam as anti-tumor agents, but I still feel there's sufficient rationale from preclinical studies, and signal from the Korean study to venture that Keppra may be an MGMT inhibitor worth taking during chemotherapy even if not needed to control seizures. Retrospective studies, positive or negative, are never definitive, and this dispute will not be settled unless a prospective trial is carried out.

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  3. Hey guys thanks for your comments and kind words. I have been away a couple of days so this is the first chance I have had to reply back to you. Firstly, yes, the 1000mg celebrex was a typo, I corrected the main text so there shouldn’t be any more confusion. SoDoWarts, my Dad’s oncologist is aware of his drug cocktail, she is not bothered by any of the supplements and they like to know what he is taking so that they can interpret his blood tests. One of the oncology nurses we have seen was actually fairly positive about us adding supplements in to his diet and we were also pleasantly surprised that his GP was open to us adding extra prescription drugs. Dad and the GP were both concerned about taking too much Chloroquine because of the (unlikely) side effect of fitting particularly because GBM people may be more prone to fitting in the first place, but we understand thats the risk that you take. We have been lucky so far and has been seizure free (except perhaps the week before we realised he was ill and he passed out on the way to the bathroom). Also since the GP has prescribed the celebrex at one per day, he is cautious about taking more without consulting his GP as he is concerned he might not get a repeat prescription if he uses them to quickly. Dad also wonders if any of these drugs scale with BMI? Dad is happy with a compromise of trying lots of different things, but is slightly concerned about overloading his liver.

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