I hope to offer some feedback and encouragement to others on their brain tumour journey.
I have not long finished six and a half weeks' (33 fractions) radiotherapy with daily temozolomide. The first post-radiotherapy scan was far better than we could have hoped for. Although I have yet to see the scans, the oncologist said he was delighted and was struggling to see evidence of residual tumour (even though we understand that there was some left in the corpus callosum). He looked a little surprised, I might add. He is now rather more interested in the supplements I am taking than he was pre-radiotherapy!
My tumour: anaplastic astrocytoma right frontal lobe, WHO Grade III, MGMT methylated, IDH1 mutation positive, ATRX expression lost, p53 wild type, Ki-67 20-25%,
Supplements/Repurposed meds:
Boswellia extract (WokVel)`
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999mg / day
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Etodolac
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600mg
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Omeprazole
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20mg od
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Curcumin (Longvida preparation)
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1000-2000mg
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CBD oil
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50mg+/day
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ECGC (green tea extract)
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Teavigo preparation, 1/day
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Melatonin
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20 mg before bed
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Omega-3 fish oils (EPA, DHA)
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3000 mg daily of EPA + DHA
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Selenium
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200 mcg daily
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Vitamin D3; or Alfacalcidol .(prescription)
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5000-10,000 IU daily Vitamin D3
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Chloroquine phosphate
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250 mg daily;
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During radiotherapy I exercised 10-15 minutes twice a day on a bicycle rigged up to a turbo trainer.
Diet-wise: I tried to avoid big, carbohydrate-heavy meals, ate lots of nuts, seeds, eggs and fish, and salad/vegetables. My energy levels actually increased during the radiotherapy (!) (I think this may have been partly because I was still recovering from the surgery when the radiation started).
I would therefore say that the above regimen has stood me in good stead so far and happy to answer any questions on my experiences to date. I have just finished the first cycle of temozolomide (at a higher dose than that during radiotherapy).
Hi Dr. Stu,
ReplyDeletethank you very much for your post. This is very uplifting to hear as I have AA as well and currently undergo chemo (radiation is done already). I'm currently only doing the non-prescription stuff as my oncologist is rather reluctant to prescribe me other medications. How did you persuade your oncologist to prescribe some of the prescription based medications?
Best of luck,
Enrico
Dr. Stu, where are you being treated?
ReplyDeleteThanks for sharing this, and so glad to hear the post-radiation scan looked better than expected!
ReplyDeleteJust a question on the pathology findings. Usually they just perform immunohistochemical staining for p53 protein, which doesn't tell if the protein is mutated or wild-type, but a high degree of overexpression is usually taken as meaning the protein is mutant (often the mutant forms of p53 are more resistant to breakdown, and accumulate, but these mutant forms have gained pro-tumor, rather than tumor suppressor function).
I just copied what was in the letter, I’m guessing they did a more detailed genetic analysis, maybe?
ReplyDeleteDr Stu - are any of these items too high on anti oxidants? About to go into radio and hoping to find a good set of supplements
ReplyDelete