Friday, 7 August 2015

Our story

Hi everyone.
My name is Hyunsun. I live in South Korea with my fiance Minjung. Minjung was diagnosed with GBM this April. The tumor was about 4 cm and located at her brainstem, which made it inoperable.
The original plan was to place a permanent internal shunt, but since her tumor did not stop bleeding she had to spend entire 2 months in ICU before her tumor grew and her condition drastically worsened. At this point, our doctor gave us 2 options: either keep waiting for the bleeding to stop or have the surgery at the risk of a very severe deficiency or even worse, death. Her family and I decided that the latter at least provided some hope since we knew from research that surgical resection is one of the most important factors of long-term survival. Fortunately, our neurosurgeon, who is one of the best here in South Korea, was able to remove about 80% of her tumor. However she is not able to speak and has problems with balancing, both of which are improving. She finished her radiation therapy 4 days ago but due to edema, she's on steroid treatment. We're still waiting for our oncologist to start temodar.

I read all of Ben's articles and his book, talked to Rich and Stephen and got invaluable advice from all of them. I couldn't thank them more.

Based on what I have learned, I figured that it'd be good to have her start taking some of the pills since it's likely that chemo will start very soon.  The list of pharmaceuticals isn't complete yet because we haven't got the lab results. But when we do get it on Monday, I'll be able to do more research and hopefully come up with a more tailored list.

Until then, we want her to start take the ones that helps boost her immune system. We started with 20 mg of melatonin and 6 pills of green tea extracts/day. And we might add garlic and mushroom extracts in a few days as well.

So far, this is what we have for nonprescription supplements

1. green tea extracts
2. Maitake-D mushroom extract
3. Resveratrol
4. Selenium
5. Curcumin/tumeric
6. Omega 3
7. Vitamin D3
8. Vitamin E
9. garlic extract
10. milk thistle extract
11. melatonin

Any thoughts/suggestions on the order in which she takes them?

I'll update the list of prescription drugs once I have all the information about her gene expression, etc.


ps. There is also this book that I read, Radical Remission by Dr. Kelly Turner. It lists 9 common key factors among survivors who has experienced medically unexplainable recovery from terminal cancers.
You can find the 9 factors @ this link below

I sincerely hope that everyone participating in this forum gets to experience a radical remission.
Let us not lose hope.


  1. Thanks for joining us Hyunsun!

    Give us an update when you get the lab results.

    Your supplement list looks good, but I might reconsider the vitamin E on the basis of a study that came out recently.

    This study was a retrospective look at the use of complementary therapy by GBM patients. Statistically, users of vitamin D had prolonged overall survival compared to non-users. Users of vitamin E had reduced overall survival which was borderline statistically significant (p=0.09).

    In the discussion, the authors go on to say "There is a lack of established scientific research in the field, but one possible hypothesis is that the antioxidative effects of vitamin E may potentially antagonize the therapeutic effects of radiation therapy by interfering in the oxidative stress-induced killing of cancer cells by radiotherapy agents... A possible explanation is that vitamin E, in contrast
    to these other antioxidant compounds, is a lipid-soluble molecule. Lipid-soluble molecules are more readily able to diffuse across the blood-brain barrier and are therefore more likely to exert their effects on the brain tissues."

    The study does not address what effects vitamin E might have combined with chemotherapy.

    I will place this study in the Brain Tumor Library, and share this folder with you.

    1. Thank you for the heads up Stephen. I will further look into it as well.