Wednesday, 12 December 2018

Mary starts to make cocktail

Hi Stephen, hi all!

My name is Mary. I have Glioblastoma with mutation IDH1 (R132H) WHO Grade IV,
MGMT nonmethylated. I'm 27 years old, 53 kg, 167.

I had resection in September, 2018. Then I had Radiation and TMZ (3 october – 15 november). So now my MRI is stable. Today I start with TMZ (5/23). I also take Carbamazepinum(600 mg per day).

I would like to ask any advise for me. I just began to research about diagnosis and complex approach, so I need some sourses for understanding components and doses.

Now I'm waiting for Curcumin, Green tea extract, Omega 3. I start with diet (in October I stopped to eat sugar, and flour meal).

1. Should I start with Metformin? 500 mg? Once per day? During TMZ too? Could I replace Metformit with Berberine?
2. Which doses are good for Curcumin, Green tea extract? Are they for every day? Where can I find recommended doses?
3. Should I discuss any additional drugs with my doctor next time? Which?

I will be thankful for any advice and studies to read.


  1. Hi Mary,

    I'm sorry to hear you are joining the GBM community, but at the same time glad to hear you found this excellent resource and group early on. Your case sounds very similar to mine - I was diagnosed in Sep. 2017, IDH mutated but non-methylated (this combination is quite rare in fact, as practically all IDH1 mutated tumors are methylated).

    I am currently slightly more than 14 months progression free - in fact, my last 3 MRIs have each shown continuous slight reduction in remaining contrast enhancement. However, I should note that I only completed RT & initial TMZ, but skipped the chemotherapy cycles and did a multi-modal immuno / virotherapy at IOZK clinic in Cologne, Germany, instead. I also take an extensive cocktail of meds and supplements , so while something seems to be working for me so far, I obviously cant be sure what it is.

    You can find my initial cocktail here:

    Apart from the immunotherapy, I have since made a few changes to the cocktail, notably:

    - Changed my meds to the Care Oncology Clinic protocol, consisting of Metformin (currently 3 x 500mg), Atorvastatin (took up to 20mg, but currently stopped due to deterioration of liver readings), Mebendazole (1 x 100mg), Doxycycycline (1 x 100mg). In addition, I am still taking Celebrex (2 x 200mg)

    More info on this protocol here:

    - Eliminated Pterstilbene & Lycopene
    - Reduced Green Tea extractto less than 1000mg
    - Added Reishi & Lion's Mane mushrooms
    - Upped dosages on Curcuma Longvida (2 x 2000 mg); in addition, now also taking 3 x 120mg Theracurmin (which seems to have the best overall bioavailability from what I read)
    - Added pretty high-dose of Sulforaphane; I'm now taking ca. 2x 150mg plus copious amounts of Broccoli Sprouts which I grow at home. I think my total daily dosage is in excess of 500mg... I'm a big believer in Sulforaphane, and once posted here on it:

    Regarding your questions:

    1. I believe Metformin can be taking with TMZ and independently as well, as it offers several mechanisms of actions (e.g. metabolism, immune support, chemo-sensitizer, ...). I started with 1 x 500mg, then upped to 2 x 500mg, and finally to 2 x 1000mg. At this stage, it started giving me nausea so I dropped down to 3 x 500mg now. No more problems at this level.
    I would also combine it with Berberine, for additional effect. I am taking 3 x 500mg Berberine presently as well.

    2. I would take Curcuma and Green Tea extract every day. Almost everyone here is taking Longvida, usually around 2 x 1500mg per day or so. This should ideally be taken on empty stomach for better bioavailability. Depending where you live, you can order it here for example (but probably on Amazon etc too):

    3. I would consider the same medication I am currently taking, as I've honestly been quite happy with it. The best thing about it is that it's pretty much side effect free for me now. So I would consider the Care Oncology Clinic protocol and Celebrex as well.

    I hope this helps. Good luck with your cocktail and the next phase in your treatment!

    Best regards,

    1. Dear John!
      Thank you very much! You gave me some points.
      Wish you good health and all best!