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Friday, 10 August 2018

newly diagnoised with GBM

Dear stephen,thanks for adding me to the blog. This blog is very informative for me.I am from IRAN and I has been recently diagnosed with GBM.I have not had a biopsy or surgery yet.But I am in the list of hospital and they will call me for operation during this month.My neurosurgeon is so skilled and told me it is a GBM-multifocal tumor.I have some questions.
1. I am about to have a surgery,what should I do before that to get best result of surgery?
2. I have planned for a cocktail:
-verapamil ,3 days before chemo,during chemo days and 3 days after chemo.
-melatonin daily at bedtime.
-tamoxifen 
-hydroxy chloroquine sulfate
-accutane
-cimetidine
-celebrex
-aspirin
-and some supplements like vitamin D3, curcumin,selenium and...

I have some question about my plan:
  • how should I put them in 4 bunches?for example in the morning I have a bunch,for lunch I have a bunch and also for dinner and bedtime.
  • Are these all drugs for just chemo cycles?which of them can be used during radiotherapy?
  • which drugs should be continued after chemo and radiotherapy?
  • I have a problematic issue in my plan.I want tamoxifen and also cimetidine.But there is a severe interaction between them.How can I solve this problem.
  • Is my plan good at all?any suggestion is appreciated.thanks all of you.

8 comments:

  1. My NO believes the Keygruda works well if you have it injected prior to resection. So if that is available to you, you might ask for a couple of infusions before surgery. Normaly they are given every three weeks.


    For reference, I had a re-currence earlier this year. 3 months before resection of that re-recurrence, I had 4 infusions of Keytruda. The mass removed was about 1/2 dead. I had another debulking a couple of months later (1 infusion of keytruda between surgeries, and the mass removed was 99% dead. I am still getting infusions of keytruda as I wait for new MRI's and review.

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    1. Hi Marc.I am very happy,you got a result from this drug.keytruda is a special drug that Just an oncologist should prescribe and here oncologists do not tend to prescribe these sort of drugs before surgery.Thanks for your reply and your useful information.

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  2. Hello Bety,

    I know at least of a few cases where doctor disdiagnosed type of a brain tumor from an MRI. So I'd wait for surgery to get exact pathology and then make up a plan...some of the drugs *target* specific mutations and not all tumors have the same mutations.

    As for before surgery, I took only supplements for immune system...like PSP, curcumin, vitamin D3. Probably can't hurt.

    Best of luck on your surgery!

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    1. Hello dear Matjaz.Thanks for your useful information.My tumor is at my frontal lobe.So as you said I should wait for pathology result.You know,I was afraid,if I had some cognitive problem after surgery,what would it be like?That's a disaster!So I wanted to make a plan for my mom before surgery.😀by the way what is mutation in tumor?

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    2. Do you already have any cognitive deficits or seizures? Are you having an awake surgery or under anesthesia? At awake surgery, neurosurgeon can try to spare critical parts of your brain and avoid lasting deficits. But on the other hand, tumor itself can cause deficits, since where there is tumor there is no more normally functioning brain tissue.
      You can ask neurosurgeon what kind of deficits you can expect, it is really hard to tell via internet, since there are areas in frontal lobe which control many things. For example I had smaller tumor in frontal lobe in ventral premotor cortex - after surgery I had a bit *paralyzed* and numb left half of my face (especially mouth).
      About mutations (and treatments,...) I suggest you read Stephen's webpage, it is really well written (also for us, who aren't really good at reading scientific "mumbo-jumbo" :) ): http://astrocytomaoptions.com/genetic-overview-of-astrocytomas/

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  3. For breast cancer patients, tamoxifen requires biotransformation by the liver enzyme CYP 2D6 to the metabolite endoxifen (4-hydroxy-N-desmethyltamoxifen), which inhibits the estrogen receptor. Tamoxifen itself has little activity against the estrogen receptor.

    So in cases of breast cancer, taking a CYP 2D6 inhibitor would counteract the efficacy of tamoxifen, by preventing the conversion to the anti-estrogenic metabolite endoxifen.

    However in glioma, the anti-estrogenic effect of tamoxifen is not thought to be the primary mechanism, and so avoiding CYP 2D6 inhibitors might not be as critical when repurposing tamoxifen for brain tumors. In any case, some sources consider cimetidine to be a "weak" CYP 2D6 inhibitor, unlike antidepressant drugs such as fluoxetine and paroxetine which are strong CYP 2D6 inhibitors.

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  4. I would take hydroxychloroquine (or chloroquine) all throughout radiation and chemotherapy. I would also take Celebrex during radiation. Some doctors advise not to take Celebrex when also on corticosteroids such as dexamethasone, due to risk of gastrointestinal problems, but this is probably more of an issue with non-selective COX inhibitors as opposed to selective COX-2 inhibitors such as Celebrex.

    I would avoid Accutane during radiation and chemotherapy. I think of Accutane as more of a maintenance therapy after standard treatments, and there is some clinical evidence it may be counterproductive to take at the same time as temozolomide chemotherapy.

    I also would not combine a non-selective COX inhibitor like aspirin with the COX-2 inhibitor Celebrex. You are very likely to get gastrointestinal erosion over time with such a broad inhibition of COX enzymes.

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  5. Dear Bety,
    Did you find any Dr in Iran who accept to work with cocktail protocol? So far I could not convince anyone. If you have any recommendation please contact me at: sahell118@yahoo.com
    Many thanks,
    Sahel

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