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Newly diagnosed Glioblastoma

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  • Newly diagnosed Glioblastoma

    Dear community!
    Hope this post will find all of you well in these difficult times. I would like to ask your advice and help.
    Patient is my Mum, Aleksandrova Alla(28.02.1965, H/W 165 cm/60 kg), immunohistology diagnosis - Glioblastoma 9440/3 C71.9, Ki67 up to 25%, tumor was surgery removed 19.05.2020, in a period from 22nd of June up to 4th of August she has completed a standard of care treatment included chemo/radiotherapy (temozolomide 75mg/m^2+radiotherapy 60gy(total given over 30 sessions)) at the place here, in Russia.

    Since the beginning of this sad story, I'm intensively trying to find alternative treatment lines for her in addition to the SoC. We’re waiting Foundation One® results ATM (must be on hands on this Friday/next week). Since 16th of June my mum is on 4:1 ketogenic diet with an average of 1350 kcal/day and, we’ve added some usual supplements like Omega-3 with DHA/EPA and methylfolate. I’m hoping to have your advice on the following subjects:
    1. While digging the net, I've found impressive information about METRICS study (https://www.frontiersin.org/articles...019.00681/full, NCT02201381) and its retrospective results. My Mother feels well ATM and doesn't meet any exclusion criteria, so we're seriously considering a possibility of METRICS protocol applying AT HOME. (Considering the fact that we are living in Russia, frankly speaking I don't think that there is a possibility for us to participate in the study personally). Is here somebody who used it personally, or have an opinion about?
    2. Which kind of supplements or side-procedures would you suggest adding to the treatment? There is a big amount of clinical trials hold last time with possible side-treatments for GBM as addition to SoC, I would like to ask your advice on use of the following (and possible interaction effects):
    · Droppers with vitamin C while on chemotherapy;
    · METABLOC protocol (a-lipoic acid+hydroxycytrate);
    · Levetiracetam (as TMZ sensitizer + anti-seizures);
    · Boswellia (now we’re reducing the dosage of dexamethasone from 3.5mg uid);
    · SLCP Curcumin;
    · Vitamins A, D3, MK-7;
    · Melatonin;
    · Mushrooms with Polysaccharide K (coriolus versicolor);
    · Epigallocatechin gallate.
    In case if somebody has a contacts of nutritionist experienced on the subject, will be extremely appreciated!


    Looking forward and will be glad to hear any answer from any of you, the work you’re doing for this forum is great and impressive! Good health to all of you and your closest.
    Thank you in advance!
    Aleksandrov Evgenii

  • #2
    Hi
    Welcome to the group! Sorry to hear what your family is going through.
    I think the Metric study people can work remotely. They will charge you but it is probably worth going through them and asking about the other additions - they worked on this for a long time and could tell you their experiances combining the 4 main treatments with other supplements and diet. I am pretty shure they would add any other supplements if they thought it would be worth it. Don't forget: ANY random, untested drug or supplement is at least as likely to cause harm as to cause good. Think of it like your car. You can go into an auto parts store and pick any random spark plug and install it in your car. What are the chances that it will work better than the tested one?
    Let us know what they say.
    Al

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