GBM When to stop fighting

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GBM When to stop fighting

by sharonprissi on Sun Feb 26, 2012 04:58 AM

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My beautiful husband of almost 21 yes now has been fighting this dreaded disease for 21 months now. He has had no quality of life from the beginning of it all. Can't drive, can't work just ears sleeps and sits in front of television. He had recurrence in December 2011 and went on avastin right away. His oncologist seems to think avastin not working. We go for next MRI this week and I'm scared to death. His cognitive skills are getting worse by the day and it is so frustrating to watch. I'm not ready to let go but can not stand to watch this either. It's so cruel to do this to anyone. We have fought a good fight and I need to know when enough is enough. I need someone to tell me it's ok to let go. He is not afraid and says he is at peace in his heart.

RE: GBM When to stop fighting

by jon4156 on Sun Feb 26, 2012 05:25 AM

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My opinion is that the time to let go is whenever your husband decides he is ready to let go.  Certainly quality of life is a major decision point to consider, and you are correct that watching someone get worse over time is both frustrating and difficult to observe.  I think the more important question is what does your husband want.

RE: GBM When to stop fighting

by sharonprissi on Sun Feb 26, 2012 05:47 AM

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Your right he has told me he wants to stop treatment if avastin doesnt work and the only reason he is here is because of his family . So I know he is hanging on because he wants all of us to be ok. I am struggling with the letting go part .

RE: GBM When to stop fighting

by jon4156 on Sun Feb 26, 2012 06:40 AM

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I wish I had words of wisdom that would make sense for the way you are feeling. When I am in your shoes I will struggle with that decision as well. I can't bear to even think about it at this point, however I know that if that time ever comes that I will have done everything in my power to prevent it. While we have control over very little with this disease, we do have the power to love, show that love, and be there for our loved ones so they feel our love radiate. Nothing will ease the pain of losing our love one and I'm not even convinced that this long "preparation time" makes it any easier when that time comes.

RE: GBM When to stop fighting

by whonew on Sun Feb 26, 2012 10:34 AM

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My sister decided it's time as of Monday. I can so relate to everything you are going throught. These are tough times, times we thought only others would ever have to endure, never ourselves. MY sister was so afraid she was letting all of us down by quitting but the truth we all breathed a sigh of relief at that moment. Still lots of tears since but only out of fear and watching her go downhill is painful. We have to let them know it's okay to be tired and that no one wants a loved one to suffer. It all tears my heart out

RE: GBM When to stop fighting

by loveiseternal on Sun Feb 26, 2012 04:21 PM

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So very sorry about your husband's suffering.  My husband quit treatment about 3 1/2 months ago.

Regarding Avastin, it never worked for my husband and he had terrible, and I do mean terrible, quality of life on it.  It sounds like your situation may be similar.  Those days were so awful as he was dealing with both treatment effects and progressing disease effects. 

When Avastin failed the NIH docs told us that they did not recommend trying anything else--nothing has been shown to be effective after Avastin fails and it would just make him feel terrible and do nothing to slow down tumor growth.  Now I think there are some clinical trials going on to test drugs after Avastin fails, but not for people with poor quality of life.

So don't feel guilty about wanting all of this misery to stop.  Yes, it is cruel.  It sounds like you may indeed have already tried everything.  We were just about at the same place you are, 22 months in, when Avastin failed.

By the way, the MRI for my husband on Avastin showed stable enhancing tumor, but non-enhancing tumor growth.

I am so glad to hear that your husband is at peace.  We are still working on that here.  Hope you find some peace in your decision,  Sally

RE: GBM When to stop fighting

by HelperM on Mon Feb 27, 2012 04:01 AM

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If he knows what he wants and is able to make an informed decision, it will be best if you support him.  Try to enjoy your time together as much as you can.  That's what we all hope for.

RE: GBM When to stop fighting

by koko10 on Wed Feb 29, 2012 03:56 AM

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My husband fought a valiant fight for 13 months from 9-08-10 until 10-16-11. He also did well after the first surgery-walked a mile or two every day at the YMCA or around the neighborhood and he used our snow blower last winter and mowed our lawn etc last summer. Then came the 2nd surgery 8-19-11 when the surgeon inserted 6 Gliadel Wafers full of Chemo in hus brain and without our knowledge. We knew nothing about the maybe deadly side effects. He got inflamation, infection and leakage from the wound and everything went down hill from there with the surgeon inserting a tube in his brain because he had infection in his Ventricles and had developed Menigitis. The surgeon said he would come through the surgery fine and he probably would have if he had't put in the wafers. If you know of anyone who might have a second surgery please ask the surgeon if he is going to use Gliadel Wafers and ask about the side effects. Even better check them out on the computer. My heart feek\ls for you. I don't want anyone to go through what I have gone through and still am because of the way he ended up.

RE: GBM When to stop fighting

by rebirth on Wed Feb 29, 2012 11:12 AM

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On Feb 26, 2012 4:58 AM sharonprissi wrote:

My beautiful husband of almost 21 yes now has been fighting this dreaded disease for 21 months now. He has had no quality of life from the beginning of it all. Can't drive, can't work just ears sleeps and sits in front of television. He had recurrence in December 2011 and went on avastin right away. His oncologist seems to think avastin not working. We go for next MRI this week and I'm scared to death. His cognitive skills are getting worse by the day and it is so frustrating to watch. I'm not ready to let go but can not stand to watch this either. It's so cruel to do this to anyone. We have fought a good fight and I need to know when enough is enough. I need someone to tell me it's ok to let go. He is not afraid and says he is at peace in his heart.
never stop fighting this monster go on with a minor hope too although any type of treatment u search fr it cld not search fr nothing can cure gbm i am sorry to say that so a ideal treatment wld be just go for therapies that do not have side effects and help to fulfill all the wishes i lost my dad due to this and its a terrible desease but still done lose hope and hope fr the best ..

RE: GBM When to stop fighting

by rebirth on Wed Feb 29, 2012 11:12 AM

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On Feb 26, 2012 4:58 AM sharonprissi wrote:

My beautiful husband of almost 21 yes now has been fighting this dreaded disease for 21 months now. He has had no quality of life from the beginning of it all. Can't drive, can't work just ears sleeps and sits in front of television. He had recurrence in December 2011 and went on avastin right away. His oncologist seems to think avastin not working. We go for next MRI this week and I'm scared to death. His cognitive skills are getting worse by the day and it is so frustrating to watch. I'm not ready to let go but can not stand to watch this either. It's so cruel to do this to anyone. We have fought a good fight and I need to know when enough is enough. I need someone to tell me it's ok to let go. He is not afraid and says he is at peace in his heart.
never stop fighting this monster go on with a minor hope too although any type of treatment u search fr it cld not search fr nothing can cure gbm i am sorry to say that so a ideal treatment wld be just go for therapies that do not have side effects and help to fulfill all the wishes i lost my dad due to this and its a terrible desease but still done lose hope and hope fr the best ..
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