A hopefully encouraging update

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A hopefully encouraging update

Hello all,

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)`
1000mg / day
Etodolac
600mg
Omeprazole
20mg od
Curcumin (Longvida preparation)
1000-2000mg
CBD oil
50mg+/day
ECGC (green tea extract)
Teavigo preparation, 1/day
Melatonin
20 mg before bed
Omega-3 fish oils (EPA, DHA)
3000 mg daily of EPA + DHA
Selenium
200 mcg daily
Vitamin D3; or Alfacalcidol .(prescription)
5000-10,000 IU daily Vitamin D3
Chloroquine phosphate
250 mg daily;

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).


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