Wednesday 11 April 2018

Hi Stephen and community,
first i want to say thank you Stephen for your great work!
After few month of reading i wanted to ask some questions as well.
My brother has a AA3, IDH+, unmethylated. After a "full" resection and chemoradiation he is getting his 7. round of TMZ chemo(23-5).
We started with a little cocktail while radiation, mainly EGCG. We then started methadone, selenium, Curcumin and ECGC for his first round of chemo. Time after time, with the help of this blog, we added some further supplements and increased the doses. Additionally we did electro hyperthermia treatment while chemoradiation and now in chemo weeks. 
The actual cocktail contains:
·         Sativex 8 drops a day
·         Melatonin 20mg
·         Methadone 25drops twice a day
·         Keppra 2000mg
·         Alfacalcidol 2mg
·         Curcumin longvida 3000mg
·         Q10
·         Maitake
·         Reiki
·         Shiitake
·         Selenium 200mg
·         Omega 3 3000mg EPA/DHA
·         Resveratrol 1000mg
·         Milk Thistle 2000mg
·         Garcinia Cambodgia and Sodium R Lipoate 500/800mg
·         Sulphoraphan 200mg
·         Artemisin
·         Aged Garlic Extract
We are thinking about Metformin.
I would like to ask Stephen the following questions:
·         Should one of the named supplements not be used in the chemo week?
·         Should we use a schedule for taking the supplements when he does not take chemo? He takes the most pills mixed throughout the day. Only methadone (morning and evening), melatonin (before bedtime), keppra (morning and evening) and selenium (before bedtime) at fixed times and curcumin with empty stomach.
·         Should we change our schedule in chemo weeks? Usually he takes methadone, sativex and melatonin half an hour before the TMZ. ECGC, Resveratrol, Curcumin and Omega 3 with the TMZ. The rest 4 hours before the TMZ. In chemo weeks he doesn`t take Garcinia Cambodgia and Sodium R Lipoate.  One hour after the TMZ he does electro hyperthermia on the first,third and last day of chemo.
·         Do you have informations about using Sativex? I asked GW pharmaceuticals about their study but they did not want to give me any information. In which temporal context should it be taken in chemo week and between? How many drops should be taken? 
Thank you for your help!
All the best for you all!

2 comments:

  1. 1. It is recommended to take 800mg R-lipoic acid 2 times a day and 500mg Hydroxycitrate (Garcinia Cambodgia) 3 times a day.
    http://crescopublications.org/pdf/CROOA/CROOA-2-019.pdf

    2. You might consider DCA.
    The side effect is peripheral neuropathy. However, the possible benefits seem to outweigh the risks. We take 8 mg / kg 2 times a day, after breakfast and after dinner, 2/1 weeks.

    3. We are also looking for the optimal dose of Metformin. Start with 500 mg once a day, then increase. My mom now takes 850mg after dinner and 500mg after breakfast. It seems that Metformin has no side effects, if you start with a small dose.

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  2. As mentioned in my comment to the previous post today, I have questions about the use of high dose vitamin D / alfacalcidol during chemotherapy. However, according to this mouse study, it could co-operate with chemotherapy.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4888049/
    Autophagy enhancement contributes to the synergistic effect of vitamin D in temozolomide-based glioblastoma chemotherapy

    I don't know (and I don't believe anyone knows) what an optimal schedule is. Many people take things twice a day (once early, once late) to provide somewhat constant drug levels throughout the day. Some things are better taken with food (for absorption), some things are better on an empty stomach (Longvida), and for some things it doesn't much matter whether taken with food or not.

    I should probably clarify that my main job is to review the scientific literature and interpret the evidence. I'm not actually on a cocktail myself so how to actually implement and schedule is something others on the blog will have more experience with.

    If you have access to the Brain Tumor Library, click on the "Conference Slides and Abstracts" folder, then click on the 2017 folder, then scroll down and click on POSTERS. There you'll find a PDF of the poster for abstract ACTR-56 (Sativex trial).

    There's also dosing information here (up to 12 sprays per day):
    https://clinicaltrials.gov/ct2/show/NCT01812616

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