Glioblastoma - What NOW??

Question

My younger brother (36yo) has GBM grade IV since March 2006. He had the surgery, chemo, radiation in April 2006 and 2 months ago Gamma Knife treatment. At Gamma treatment the tumors returned to 4.5cm and 2 cm, with little growth since gamma treatment.(?) He is starting to require constant supervision due to seizures and overall motor skill degression. His ability to speak and put thoughts together has gotten worse.
I am his medical executor, and need to prepare my parents for the inevitable.
PLEASE provide some ideas as to what my brother could experience next. All text read does not state if "pain and suffering" is part of the process. Is a SECOND surgery worth the agony? What about quality of life? How late is too late to make a decison on the second surgery?

Thank you,
BIG DADDY
and also a BIG BROTHER..

Answer 1

I'm so sorry to hear about your brother. Unfortunately, this cancer spreads along the nerves in his brain, and has likely "seeded" to other areas which aren't visible yet.
Please don't put him, or your family, through another procedure. Another will cause more disability from collateral damage. I know the main part of the tumor is too big for another gamma knife intervention, and an open procedue is too much.
Enjoy him in the small time he has left, and please consider hospice care. The nurses are wonderful in helping the patient and family to cope with end-of-life issues.

Answer 2

If he is not already doing so, get him to a medical facility that specializes in researching and treating brain tumors!! A general cancer center is not enough when it comes to brain tumors. Your brother needs to be seen by doctors who deal with these "monsters" every day. Don't give up. The seizures and deficits that your brother is experiencing could be due to inflammation and/or irritation caused by the treatments that he has received(ever heard the term "chemo brain"?). The effects of the treatments do not necessarily end as soon as the treatment ends. It is possible that some of his symptoms will improve, and he can learn to adapt to any lasting motor deficits. I am a 10-yr. survivor of an Anaplastic Astrocytoma, grade III. I've had five surgeries, several chemotherapies, and external and internal radiation. I went through a stage where I had to crawl up stairs because my sensory and motor skills were declining and I had lost the left field of vision in both eyes. I was also having seizures regularly and was not able to be left alone for extended periods of time. And, yes I did experience headaches at times, usually in conjunction with a seizure. Now, however, I am doing very well. The biggest obstacle in my life is the fact that I cannot drive because of my vision loss. I take 2 anti-seizure medications to control my seizures, and I attend physical and occupational therapy twice every week to keep my body strong and able to perform the motor functions that were affected. I am able to do most things for myself now. I have changed the way I do many things, and I need help with some. I urge you to look into clinical trials. Most of my treatments were clinical trials, and they saved my life!
It is possible to live for a long time after a GBM diagnosis. Please go to davidmbailey.com and read this man's story. Good luck!!

Answer 3

I'm sorry. I can only tell you my mother was diagnosed with a glioblastoma grade 4 , this was about 20 years ago. She opted for no treatment as there was so little hope, especially at this time, she lived only three months exactly as the doctors predicted, BUT she had no pain or agony although she did lose her ability to speak out coherently, it seemed she could understand and read right until the day she slipped into a coma and died. She was 65 . Honestly I would really think about if the second surgery is worth it. I really pray that God gives you strength and wisdom and that your brother will have peace and less suffering.

Answer 4

You can google glioma, and dig around in Webmd.com for some info... as you have already discovered, gliomas don't respond permanently to anything... and pain is generally not an issue. In his place I would not wish a second surgery... as my dad said, surgery in the brain is like opening a watch with a crowbar.

My girlfriend's husband died of it, and the decision after a primary surgery, was to not go for a second but rather to simply keep him sedated, and as comfortable as possible... they used cortisone as one medication...to reduce swelling.. He simply slowly lost it all, but was never in much pain.

Answer 5

In my opinion he has run the gammet. I have never seen a recovery from this malignancy. Keep him comfortable and prepare the family. I doubt pain will be a problem in his state.