First post on my two years of fight with Glioblastoma

I am a 46 year old man living in Seoul, Korea. My name is Sunny Lee. My wife was diagnosed as having Glioblastoma (GBM), one of the deadliest brain tumors, in late May 2009. Doctors told me, at different times in the last two years, that she would have only a few months or a few weeks to live .

Now 2 years have passed since the diagnosis and she is still alive although her condition is not as good as I want it to be. 61.1 percent of GBM patients survive for one year with the standard care that includes surgery, radiation, and chemotherapy. And only 20 percent of GBM patients survive for two years based on the standard care. This means that my wife is now in the small group of patients (12.4%) who survive more than 2 years.

What’s noteworthy is that my wife failed to have a surgery due to the location of the tumor which was too deep inside the brain and only had a biopsy. She completed radiation on August 13, 2009 and chemotherapy on September 22 of the same year. She was supposed to have longer chemo but the chemo had to be stopped as she had pneumonia induced by the chemo (Temodar).

Given that she only had a standard set of radiation and incomplete chemo, she should have lived for much shorter period. I attribute this longer survival to several factors.

First, I stopped, or was forced to stop conventional therapy because of too many recurrent and fatal side-effects of chemo, which helped her to regain her immunity.

Second, I began to use various supplements to fight GBM after stopping radiation and chemo. One of the most effective supplements she had has been Poly-mva. I tried about 10 supplements and made more than 1,000 research notes to find information that will be helpful for the fight.

The most successful period in my fight was from July to September 2009. During the three months, my wife walked better than I and was in about 90 percent of normal condition. Until, she began to have confusion, language problems and weaker right leg in late Septmeber 2009, I almost thought that I finally cured her from GBM.

Considering that GBM is very fast growing tumor and the oncologist told me in June 2009 that she would have only a few weeks left and again the radiation doctor told me in October 2010 that she would have about five months left, the fact that she is still alive 8 months after the last gloomy prediction makes me think that this may be something other than tumors. I strongly suspect that what she has now is late radiation damage.

At first, it was just short-term memory problems, forgetting names of things but she got steadily worse during the last 8 months. Now, in early July of 2011, she lost the ability to use her right leg and right hand, cannot have a normal conversation, and serious incontinence. I think things could have been different had I known things I know now when I first began her treatment in May 2009.

Now I almost exhausted options to deal with radiation damage and am expecting the hyperbaric oxygen therapy to work. We had 27 rounds of HBOT sessions up to now, but no improvement had been made.

I am planning to write a series of blog posts on my fight with GBM in the hope of offering some information on ways to fight GBM to people out there and help them not to make the same mistakes I made.

In the next post, I will share what I found about GBM in terms of life expectancy and eventual outcomes of conventional therapies such as radiation and chemo.