Gbm

I have never come to this part of the site, I always go to the brain cancer part. But I am very interested to hear if anyone has had any success with glibomastome metform IV. My wonderful husband has been battling this for 7 mos now. He did the radiation and some chemo, temodar nearly killed him. We are on the cellect program right now but if anyone has any success with this horrible disease and another avenue I would love to hear from you. Thank you
Nicks wife.

Geri, my wife is an 18 month GBM survivor, works full-time and runs triathlons. There are a growing number of long-term GBM survivors out there and with some of the recent advancements in targeted therapies I am confident we will see this number continue to grow. Good luck!

I am very happy for you and your wife. What kind of treatment did she do exactly. The docs are trying to get my husband to do steritactic Radiation therapy. Have you heard of this?

Geri, my wife has done resection, re-resection, IL-13 clinical trial for newly diagnosed patients, radiation, Temodar, CCNU, CPT-11/Avastin, Temodar/Gleevac and is now on Tamoxifen. We had a comprehensive genetic analysis performed on her tumor which helped to guide us to this treatment regimen as we believed it to offer the best shot at long-term survival. I have indeed heard of stereotactic radiosurgery. It is a highly precise form of treatment using multiple beams of radiation targeted at a focal point inside the brain. The intersection of those beams produces a high dose of radiation which is lethal to cancerous tissue (and healthy tissue as well). I would strongly recommend you get a second or even third opinion from one of the major brain tumor centers such as Duke, MD Anderson, or UCSF. Good luck!

Thanks for the heads up on the sterotactic, he has thankfully decided to wait for now. How did you go about getting a genetic evaluation of her tumor and what hospitals and doctors are you with. My husband did not react well to temodar, he almost died from it so he has been reluctant to go back on chemo, we are doing alternative actions right now but are always open for suggestions on how to prolong his life. This is a terrible form of cancer and has taken so many lives. I hope our respective loved ones will be among the long term survivors and God Willing even become cancer free.
Nicks wife.

In the east they say that from pain and suffering is birthed Love and compassion. What ever the outcome is for each person on this list we all will walk away with a deeper appreciation of the power of love. And we will have a deep understanding of the sacredness of life. And we all will know at a very deep place how blessed we are.

I am not in anyway trying to hide the truth about this ailment. It is simply un bearable to face. But being truthful and open with others is healing for us all. This very action is positive. Your writing back to me is giving me strength. That is positive. Supporting each other is positive.

This event that marks the end of life is no fun it is painful and it at times feels so unjust. I read ounce a phrase from a great spiritual teacher that went like this.

Birth and Death are part of life. God has no reason behind it. God take the young and the old. The sick and even the doctor.

What this has brought me to understand is that we are all going to go someday. The time is never told to use. So possibly the message of the end of life is to learn to live the life that we have 100%.

To share more with others and reach out to the needy. Who knows ??

Depression is a circle of thought that says what about me what about me. When My wife was diagnosed and I started looking all this stuff up. I fell and still do fall into rutts of thinking what will it be without her if she goes in a year or two.

This brings me beep suffering. But when I shift my thoughts to what about her and how can I serve her better my depression shifts from what about me to what about her.

Anyway I want to support everyone in the thoughts that we all have some cause suffering and others may bring freedom. The process is positive.

In the east they say that from pain and suffering is birthed Love and compassion. What ever the outcome is for each person on this list we all will walk away with a deeper appreciation of the power of love. And we will have a deep understanding of the sacredness of life. And we all will know at a very deep place how blessed we are.

I am not in anyway trying to hide the truth about this ailment. It is simply un bearable to face. But being truthful and open with others is healing for us all. This very action is positive. Your writing back to me is giving me strength. That is positive. Supporting each other is positive.

This event that marks the end of life is no fun it is painful and it at times feels so unjust. I read ounce a phrase from a great spiritual teacher that went like this.

Birth and Death are part of life. God has no reason behind it. God take the young and the old. The sick and even the doctor.

What this has brought me to understand is that we are all going to go someday. The time is never told to use. So possibly the message of the end of life is to learn to live the life that we have 100%.

To share more with others and reach out to the needy. Who knows ??

Depression is a circle of thought that says what about me what about me. When My wife was diagnosed and I started looking all this stuff up. I fell and still do fall into rutts of thinking what will it be without her if she goes in a year or two.

This brings me beep suffering. But when I shift my thoughts to what about her and how can I serve her better my depression shifts from what about me to what about her.

Anyway I want to support everyone in the thoughts that we all have some cause suffering and others may bring freedom. The process is positive.

You can get a genetic analysis at UCLA. Dr Cloussey, a neuro oncologist is someone to contact. There are also some clinical trials. Sadly, my husband has been unable to get into clinical trials thus far, as his tumor was small and there were no cells left over for genetic analysis. He can't even go off label for Avastin - yet. Sort of good news/bad news. Don't know where you live, but you can give it a try.

This is a horrible disease, and it is hard to see my husband so fatigued and his speech impacted by what has happened since his diagnosis and surgery in October. He is halfway through a daily radiation regimen and Temedor. Tolerates the Temedor well. The last 10 days are a radiostatic high dose "boost".

Good luck and prayers for you and your family. Take care of yourself.

Geri,Ben Williams is a long-term GBM survivor and he has written a book about surviving terminal cancer. We certainly worked part of his philosophy of systemic, rotational chemo attacks into our plan. We also developed a good working relationship with a number of pathologists who are performing research into the genetic causes of cancer development. We offered samples of my wife's tumor in exchange for access to the genetic results. While there are only a few drugs available today that are known to target specific genetic anomalies, there will be more available in the future. We are standing on the cusp of treating a patient's individual cancer rather than treating them as a standard GBM patient. Good luck!

We are also fighting the horrific gbm disease. My husband , 51, dx 10/4, resected 10/11 with gliadel wafer implant. Is currently being radiated w/ low dose of temodar. He is handling both well, no nausea little fatigue but we are only 1 week into treatment. It is frightening to read these posts. The effects of this tumor and surgery have left him a different man.I miss our old relationship. Do you have a good support system? It is essential for your well being. Thanksgiving was difficult and I am dreading the holidays...It is good to hear that one person is doing well with gbm she is indeed a miracle.