Saturday, May 12, 2012

My wife heesun died on May 2nd, 2012 at 12:05 pm. My attempt to cure her of glioblastoma was a big fat failure. Or I might say, I had a success in prolonging her life up to 34 months with unsuccessful surgery, interrupted chemo and radiation and numerous supplements. But her quality of life during the last 20 months was so bad that I hesitate to call what we had a success. Anyway, now is the time for me to move on just like my wife did.

Since my wife died, I turned my focus on to different topics. They are near-death experience and quantum physics. I want to understand the reality behind what happened to us and what she would have from the moment she left me. One recent realization that I had is time may not flow and all the past moments simply exist forever as they were in the time-space continuum in the universe. That means I can still love my wife in the past because she still exists in the frozen "presents" that are scattered in the whole continuum.

Saturday, July 2, 2011

Survival Expectancy of Glioblastoma patients

The first thing I wanted to know when I learned that my wife got glioblastoma was how long she would live from the time of diagnosis. I guess this would be the case of most caregivers.

Here are some of the information I gathered about life expectancy of GBM.

1) 13 months (Harrison's principles of internal medicine)

Treated with dexamethasone alone following surgery, the mean survival of patients <65 years with glioblastoma is 7 to 9 months.

Survival is prolonged to 11 to 13 months with radiation therapy. Focal brain irradiation is less toxic and is as effective as whole-brain radiation for primary glial tumors. Radiation is generally administered to the tumor mass, as defined by contrast enhancement on a CT or MRI scan, plus a 3- to 4-cm margin. A total dose of 5000 to 7000 cGy is administered in 25 to 35 equal fractions, 5 days per week.

Chemotherapy is marginally effective and is often used as an adjuvant therapy following surgery and radiation therapy.

* Based on this information, I calculated what I could have gotten from each treatment.

= Surgery - 9 months
= Radiation - additional 4 months (maximum)
= Chemo - the source says chemotherapy is marginally effective. The chemo drug I used for my wife, Temodar, is known to add 2 months of survival time.

As the surgery of my wife failed to cut the tumor away, the time I got from the treatments (radiation and chemo) could be 6 months at most. However, at the present she is at 25th months from the diagnosis. I should also mention that Temodar may have added 2 more months but my wife had to stay in the hospital longer than 2 months because of pneumonia (that happens to 1 among 5,000 patients who take Temodar) and other side-effects of Temodar. Looking back on it, chemo was totally useless. It just gave her pain and severely lowered quality of the life.

2) 722.98 days (about 24 months) - UCLA’s real-time survival data for GBM

This figure is for people aged 35 to 50. I used this figure to estimate my wife’s life expectancy as she is 45 years old.

Other age groups survival data are as follows.

20 to 35: 1,018.31 days (33 months)
50 to 70: 500.75 days (16 months)
70 to 100: 419.96 days (13 months)

The website link is here. It is not the UCLA website but another website having the older information of the UCLA page. The new page of UCLA website is harder to understand than old one.

* Some information on survival expectancy of GBM are median figures. To understand the difference between the Mean and the Median, read this article written by Stephen Jay Gould, an eminent scientist who successfully fought cancer based on an objective understanding of median.

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.

Thursday, October 28, 2010

Can't do anything

Speech problem of my wife is not getting any better. Everyday she fails to say exact words to describe a thing or a situation. No sign of physical difficulties as yet. But her mind seems to be not clear. I read some bad descriptions about language problems of brain cancer patients. For example, cases where the patient finally gets to the point that she/he cannot understand what is being said by other people let alone inability to express their thoughts. It just makes me shiver to imagine such situation.

I cannot get myself to work. I cannot write anything. I cannot think about the better future. I cannot make my mind calm. I cannot do anything.

Monday, October 18, 2010

Life goes on

In June 2010, the oncologist told me that my wife has only three weeks or so before she becomes fatally sick meaning 'dies'. Since then 4 months have elapsed. She is still with me. She is quite good. I am sure that this is mostly thanks to polymva I gave her since late June because I had to stop all conventional therapies like chemo or radiation last year due to too many fatal complications.

MRI taken two weeks ago showed that her original tumor did not grow. Unfortunately, there are also some bad news. Cancer is newly advancing to upper part of the brain. She also has two new small tumors in addition to existing two ones. One of the small tumors is somewhat bigger than other ones and is affecting her language ability and short-term memory.

I seem to have reaped one-third success. Stopped the original tumor from growing but failed to prevent advancement of cancer to other area and emergence of new tumors.

Strangely, I am more worried than I was in June when I knew she had only three weeks or a month at most. Maybe I have now some hope and don't want to lose it again.

I increased the dosage of polymva to 16 teaspoons from 12 teaspoons a day. And I wait. I wait for something to happen or something not to happen.

Monday, January 4, 2010

I am waiting for the radioactive

I am waiting for the radioactive oncologist at the hospital to hear his plan for treatment of my wife's tumor. The worst news would be that she will die soon and nothing can be done to stop it from happening. I can accept the news but I will do everything to make her live as long as she will be allowed to.

Saturday, January 2, 2010

A calm in the storm

It's been a while since my wife had returned home from the hospital. For now, things are almost normal. She cooks and takes care of our kids' study also meet her friends nearby.

The MRI result in December showed that her tumor neither got bigger nor shrank. I have a vague hope that it has something to do with flaxseed oil she has been eating since late November and also vegetable she eats everyday.

Of course, I don't know for sure. The median survival expectancy of 11 months looms gloomily over my head and I look at her with a feeling of uneasy fear about what may happen in the coming months. I hope for miracle but I am also afraid of the future.