Sunday, 31 January 2016

What would you recommend?

My mom is diagnosed with GBM. Init diagnois/surgery dec 1. Follow up surgery Jan 14 (due to delay in radiation schedule due to misscheduling).
She has EGFRv3 and unmethylated GBM and is borderline anemic.

We were planning on putting her on ketogenic diet, fish oil,  turmeric and melatonin. But due to her being borderline anemic we are shying away from fish oil, also from keto because its hard.

Im not really sure what to supplement at this point besides vaccine.

NO is only pushing for Stupp Protocol and possibly Avastin. And is trying her best to get us into the Celldex trial or possibly the CAR-T cell trial.

But as far as supplements we dont have anything. What should we do?


  1. I would research the drugs/supplements listed in the various cocktails being used. I would start with all that do not impact your mom's anemic. If you want more advice, there are a couple of paid nutritional services that will review your mom's case and lab work. I used Nutritional Solutions. They will then provide recommended supplements. Work with your doctor on the drugs listed in the cocktails to see which ones are ok for your mom's condition.

    If you do not want to go pure Ketogenic diet, then go Atkins or low sugar. I believe one of the best things that has helped me so far is the initial Ketogenic diet and then a more Atkins style diet.


  2. First point, I know several patients who are currently successfully following a ketogenic diet. It’s a lot of work. But it works for them.
    Second point, during my treatment I used a number of supplements and modified my diet. This was done to manage side effects. It worked well, and was done under the supervision of a naturopathic doctor. This particular naturopathic doctor was licensed as such by the state and had the suffix ND (as opposed to MD) after his name. He also this particular naturopathic doctor also worked hand in glove with my neuro-oncologist so that their treatments would be mutually beneficial.
    Last point, if you are considering supplements or a ketogenic diet, consider having a naturopathic doctor (or at the very least a registered dietician, although they usually dislike anything ketogenic) work with you on your team.