Thursday 1 March 2018

Conflicting advice from ND

Hi all,

My ND is suggesting the following things. I’ve read reports that state the opposite in these cases and wanted to get opinions. She is going to supply me with the studies she is basing her recommendations on as well.

During radiation and TMZ treatment:

No Boswellia - this is because of TMZ, not radiation. I was hoping to use Boswellia to avoid swelling and steroid use.
Fish Oil is okay during radiation. She says this can also counteract swelling.
Melatonin during radiation, she says it’s good to do.
Medical marijuana higher CBD than THC - I’ve seen advice that it should have higher THC than CBD


I have all of my files into Duke now and am hoping they’ll offer treatment alternatives. Mostly, I’m not sure I will be doing the TMZ, since the tumour is unmethylated. So some of these things may not be an issue.

Thanks.

Maria

4 comments:

  1. Hi Maria - for what it's worth, I did all of these supplements (+ many, many more) while going through the concurrent RT/TMZ treatment stage. Obviously hard to say if it helped or if it was detrimental, but I was able to go through the entire treatment without any swelling or steroid use, which I think might have been supported by Celebrex and high dose Boswellia (went up to 4800mg at some stage). For THC / CBD I was exactly in the middle, with a 1:1 mix (Sativex). I havn't heard or seen anything negative on any of these supplements you mention combined with RT or TMZ - quite in the contrary, there are studies showing positive synergy if anything.

    I would consider adding a few others, like Pterostilbene for RT (see http://astrocytomaoptions.com/radiation/), medicinal mushrooms (e.g. PSK, PSP; Maitake D Fraction...) and also EGCG (this one could be more controversial, though, due to anti-oxidant properties.... divided opinions on this I guess, but I believe positive studies are dominant).

    Good luck with the cocktail!
    John

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    1. FYI - not sure if it's useful, but you can see my full RT/TMZ stage cocktail here:

      https://btcocktails.blogspot.de/2017/12/treatment-options-post-rttmz-phase-for.html

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  2. One negative result for MGMT methylation wouldn't be enough to convince me that the tumor is indeed MGMT unmethylated, especially in the case of a lower grade IDH1-mut astrocytoma. If a second sample from a different part of the tumor also returned an unmethylated result, that would be much more convincing.

    I doubt anyone actually knows the optimal ratio of CBD:THC, clinically. It's impossible to estimate this on the basis of in vitro work alone, because there may be other, more important mechanisms of action that come into play in vivo. The only clinical trial of cannabinoids for brain tumors used Sativex (1:1 ratio of CBD:THC). Some people prefer low THC/high CBD oils because they don't enjoy, or are unable to function with a higher content of psychoactive THC.

    I'm interested to hear the reasoning for discouraging Boswellia in combination with TMZ.

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  3. Thank you Stephen and John.

    I think I’ll need to research a bit more and ask her a few questions.

    I do have a much longer list, John, we were just exploring what comes and goes during radiation and TMZ.
    I will take a look at your protocol though.

    Maria

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