MJ's in peace

Hi all,

As of Sept 4, we decided to stop all treatments for Minjung. The scan showed that her tumor has grown substantially over the last few weeks, which explains various symptoms that developed recently. We were considering whether or not to pursue chemo+cocktail treatment immediately, but all of the oncologists we met told us that with her physical condition, she won't be able to tolerate a single round of temodar and that it will only increase her pain. The doctor told us that we could put her to sleep until she passes, so she wouldn't feel the pain and suffering at least.  Her family decided that it is the best they can do for MJ at this point and agreed to his offer... and I respect their decision.

Here are some of the things that I would do differently if I could go back in time. Hopefully, it will help anyone who is in similar situation in devising their treatment plan. Her tumor is located at brain stem, which originally made it inoperable. Our initial plan was to implant shunt and start with RT+chemo protocol as soon as possible. However, we had to wait 3 months because the bleeding at her tumor wouldn't stop, which made shunt placement impossible. I kept thinking over and over that if we could start chemo and radiation right away without considering shunt option, we could have had a better chance. During that 3 month period, her condition became worse and her tumor grew... at that point, we literally begged our neurosurgeon to do the surgery because normally, neurosurgeons choses not to operate in situations like this.

Also, if your situation prevents you from doing RT+chemo simultaneously, may be doing radiation first isn't the best move, especially when your best bet is the cocktail approach. Radiation did not stop her tumor at all; instead, it grew. And by the time radiation was over, her symptoms became worse and we did not even have a shot at battling this evil disease with cocktail approach.

I still firmly believe that cocktail approach can produce miracle. Furthermore, GBM patients should try everything to increase their chance of beating this disease at every aspect of life; maintaining positive attitude, exercise, eating healthy food, laughter, releasing suppressed emotions, etc.

I also want to thank Stephen for creating this discussion venue and for helping us out with invaluable advice and information.

Please do not give up your hope.

My prayers are with all of you and your loved ones.

Sincerely,
Hyunsun