Husband Has Gbm Iv

Just found this cancer compass again..husband dx 6/11/04 with GBM IV. Need information on how other GBM warriors are doing...Max's tumor has been dormant since Jan 06...but, we keep having complications. First we ended up in hospital in June due to heart rate of 38..ICU for 2 weeks..they seem to think it is the way that the brain was communicating to the heart...living on meds for this now...recently we are having many other problems...talking in sleep having a one sided conversation...thinks his father is still alive...passed over 15 years ago....out of the blue during sleep he will come out with numbers.....having problems forming words...cannot complete his sentence....having a hard time understanding things....some time he does not know what clothes are what....legs are strong enough...but, brain is not commnuicating in order for them to work properly...in the wheel chair more and more each day...we seem to be going down hill all the time...even though the tumor is dormant...are any of the other GBM patients having these problems...Max is 68...can no longer read due to loss of eyesight...cannot keep up with what is happening during a movie. His tumor was in the right occipital lobe...cannot do anything around the house....just need some information....on what to expect...I am so thankful to still have him..I just want the best quality of life for him. Please any information that any of you have will be very helpful.

Thanks
Judy

I am so sorry to hear about your husbands progression. It sounds a challenge you have on your hands with but I understand what you mean as far as being thankful for what you do have. I wish I had some great advice for you. It sounds like you are doing everything you can with love.

My father had GBM IV (six tumors) three large ones and several were inoperable...He left us in March..I often had feelings similar to what you are expressing agfter seeing continued weakness.. especially with the radiation and steriods.. From the time my father was diagnosed he could no longer walk.. paralized on the left side.. so he was hospital bound tho we go thim out nearly everyday in his wheelchair. I know it is hard to see the 'progression' of this terrible disease. I tried to focus on the ways we could connect. on the times he had some awareness of who we are and of being loved.. I know that even people who cannot communicate can still have deep feeling and connection.

I can tell you about my experience with my father.. It was a gradual transition .. He would talk less and less thru the days..He would eat less and less. It was obvious he was not fully aware of everything and would sometimes say confusing things and sometimes be right on top of a conversation. A lot of that depended on how well rested he was. Trying to fight the disease and he fought hard was a draining experience for him. (as it was for us) He gradually grew tired and slept alot. It was a very gentle transition. It was difficult in the last few weeks becasue he was having heavy breathing .. and the medicines they use to treat this (I think it is called Roxalin)can cause fatigue and relaxed breathing so they wanted us to sign an DNR which there were varying opinions on in our family. Having it clear what his wishes are is so important and having all of this documented is helpful. We did not have much time to discuss this and by the time we did it was so hard for him to talk about. He had breathing treatments to help dialate this lungs. I think my father had excellent quality of care.. whenever he was uncomfortable we directly addressed the issue immediately. I think it helped to alleviate some of the helplessness invloved in having to succumb to forces beyond our control.. I am so thankful for all the time we had together and for the opporuntiy to connect with my father in a way that would never had been possible in any other way.. I know it is a time in his life that was very challenging but also one in which he felt the most loved and cared for in his life. and knowing that means SO MUCH to me.

take good care of yourself. I hope you are able to get enough rest and that you are getting lots of support yourself..

I hope you are on the brain cancer section here --I think I have seen your name.. brainshospice.com is a good site also.

take good care and be well

I hope this was some of the information you were looking for.

Christine

How long did he last from the time he found out he had the tumors? my sister just found out on 8-22-06 hers is on the top right side and her left side is paralized right now. she's still in the hospital also (in houston) waiting to undergo therepy and chemo..........thanks

Hello
My Mothere was diagnosed with this last October and went through 2 surgeries in February 06 ane then April 06 again. She only got one shot of Chemo and Tumedor the doctors told us that they only have a 15% chance of working anyway. The progression is slow at first ehn it speeds up. When she first got diagnosed in Oct 2005 she was fine exept for some headaches once in a while by januarry she was not able to read anymore and as time passed she was able to do less and less. Now almost 1 year to the day of her diagnosis she is on Hospice and is almost completly incoherent. We are all around her everyday and sometimes she remembers us but mostly nothing. The problem with my Mom is she tends to get very mean when she's awake. She always yells at us and my dad and was pretty violent on many occasions. We are giving her ativan now to keep her safe it is helping although she is sleeping more from it. All I can say is hang in there. Our hospice nurse said that sometimes God makes it so hard for us ( the caregivers) so that when she leaves us it hurts a little less. I don't think that is true, it will hurt he same no matter what.

Live each day so that it's memory lives on forever in your heart.