Gbm Gr.iv

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Gbm Gr.iv

by Roller_Coaster on Tue Feb 22, 2005 12:00 AM

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My husband was diagnosed in May/04 with GBM Gr.4 He was 34 years old at the time. He underwent surgical resection and 30 rounds of radiation, and is currently on his 6th round of temolozide chemo. We have 2 children aged 8 and 6. It has been a very difficult journey for all of us. It sometimes is even more difficult because I work in trauma/acute care and am acutley aware of our bleak future. He has changed quite a bit in the personality area. He has become more agitated and agressive which makes these trying times even more difficult especially for our children. I know he has done well up until now but in the last 3 weeks seems to have gone downhill a bit. I am scared and feel like I have the wait of the world on my shoulders. I feel such agonizing pain for him even though he is at peace with his diagnosis and he has said numerous times he is grateful it was him and not myself or the children. I just pray that his end comes quickly without suffering as it has already been so difficult watching him change and become so dependant on me for everything. I would not trade places with anyone for I believe everything happens for a reason and I feel that God has brought us through this far and will continue to do so. If anyone else is in our situation it would be great to hear from you as it is a very lonely place to be. Sincerely, Alisa

Gbm 1v

by Marmiedee on Wed Feb 23, 2005 12:00 AM

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Hi Alisa, I feel your pain. My husband was diagnosed just over a month ago and it seems our whole world has been turned upside down. He had surgery and they were able to remove all of the existing tumor but as we all know, it will come back. He begins chemo and proton radiation next week. Everywhere we have searched for answers, we have been faced with the same bleak outcome. My husband is 58. I am glad to have found this website to share with other people going through the same thing. I feel that the doctors overlook the pain that the partner is going through along with the patient. It is truly agonizing to watch the person you love living with this terrible disease. Please keep in touch and know that you are not alone. Take care. Patty

Alone

by Roller_Coaster on Wed Feb 23, 2005 12:00 AM

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Hi Patty, Thank you so much for replying to my message. It is a very lonely and scary place to be. Not only that but do you feel like you are overwhelmed with everything? He is such a different person it is almost like I never knew him. His personality has changed so much it is scary. I truly hope and pray that this never happens to you. It is very hard to have compassion for someone who continuously abuses you verbally and has suddenly no respect for you and the stress that I am under. Sometimes I feel like running, I know that sounds horrible and of course I never would but man oh man it is tempting some days. I never thought my life would end up like this. Especially with him living out his last days a totally different person. The times where he is kind are very few and far between. The doctor warned me about this change but I had no idea it would be this bad! I just pray that peace will be restored for all of us someday and that we will have some kind of normalcy after all this is over. I hope that your husband will remain as close to the person you know so that you will never face losing the one you love before he is actually gone. I hope to hear from you again and until then no matter how hard the days ahead seem always remember that somehow someway there is always a positive in every negative. We just have to look for it and hold onto it. Until next time. Take care and God Bless you both. Alisa

Alone

by Marmiedee on Wed Feb 23, 2005 12:00 AM

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HI Alisa, I'm so sorry to hear how bad it has gotten for you, I can't imagine how hard that must be. So far I havn't had to experience that yet, but then again my husband is newly diagnosed. The only adverse affect he has right now is some weakness in the left leg. I guess it depends what part of the brain is affected. My husband has returned to work as we are awaiting the lead mask he needs to start proton treatment. I will keep you in my thoughts and prayers. Hang in there, you sound like a very special person. Patty

Glio

by Newmom on Wed Mar 16, 2005 12:00 AM

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Hi Alisa I have not been on the site in some time. I just read your nessage and I feel the same dispair. My father is 76. He was diagnosed in September. I had just had my first child in September and he was a preemie. They told us, that my father would only live 6 months to a year with the most aggressive treatment. In November I found out that I was pregnant again. I couldn't figure out why god would put so much on my plate. In Jan I sold my house and I bought my parents. I quit my job and I take care of my father full time. my dad has gone down hill more physically than mentally. It is a very lonely place. Please feel free to respond

Alone Gbm iv

by Carsusie on Wed Apr 13, 2005 12:00 AM

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Alisa (and others), I am in a similar situation, but I am even sadder for you because of your husband's age and that you have young children...but quite frankly I'm also sad for my husband and myself and also overwhelmed. I am 59, my husband 65 (both "young), recently retired and he was just diagnosed and had surgery with only partial removal. I totally identify with you in terms of the personality changes--my husband's is deep left frontal and that controls memory and personality. He has also gotten mean and his frustation with words and not feeling well makes it worse. I feel guilty when I get angry because I know its the tumor---but I can't help it. Most of the time I'm just heartbroken. My husband either doesn't know or denies that he he so seriously ill--he has sort of heard it from doctors (but most of the time they spoke to him when he's heavily on drugs or just out of surgery)....We are going through "standard" treamtment and then will look into new therapies but quite frankly if they only extend life for a few months, our decision will also depend on the "quality of life issues and his state of mind. My problem is that I want this to be my husband's choice and I don't think he is quite totally understanding to make his own decision. Sorry if I gave too much personal information.

Gbm

by Hopeful30 on Fri Apr 22, 2005 12:00 AM

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I have been reading all the messages -- I lost my mother to GBM IV on January 15, 2005; about 3 weeks after she was diagnosed. Because her tumor was inoperable and she already had deficits (which appeared suddenly and within 2 weeks time), she opted not to take treatment. Although it was devastating to watch her go through this, I think that she made the right decision. She told me she was not afraid to die, she was afraid to suffer. There is no cure for this cancer -- yes, I suppose miracles are possible, but they are rare. This is a devastating disease - it can sometimes only be slowed, but you are right to consider quality of life. Some people on these boards tell stories of getting treatment and still functioning and being happy. My mother did not stand a chance. She was affected immediately; she lost her spatial relations and could not find her way. She needed to be watched and attended to 24 hours a day - and more horrifying still -- she was aware of everything that was happening to her and realized she was getting worse. I have memories that are very sad and scary and do not think they will ever go away completely. I am sorry for everyone who is dealing with this disease -- I only hope and pray that someday they will find a cure.

RE: Gbm Gr.iv

by woztoo on Wed Jul 23, 2008 12:00 AM

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On 2/22/2005 Roller Coaster wrote:

My husband was diagnosed in May/04 with GBM Gr.4 He was 34 years old at the time. He underwent surgical resection and 30 rounds of radiation, and is currently on his 6th round of temolozide chemo. We have 2 children aged 8 and 6. It has been a very difficult journey for all of us. It sometimes is even more difficult because I work in trauma/acute care and am acutley aware of our bleak future. He has changed quite a bit in the personality area. He has become more agitated and agressive which makes these trying times even more difficult especially for our children. I know he has done well up until now but in the last 3 weeks seems to have gone downhill a bit. I am scared and feel like I have the wait of the world on my shoulders. I feel such agonizing pain for him even though he is at peace with his diagnosis and he has said numerous times he is grateful it was him and not myself or the children. I just pray that his end comes quickly without suffering as it has already been so difficult watching him change and become so dependant on me for everything. I would not trade places with anyone for I believe everything happens for a reason and I feel that God has brought us through this far and will continue to do so. If anyone else is in our situation it would be great to hear from you as it is a very lonely place to be. Sincerely, Alisa

 

RE: Gbm Gr.iv

by woztoo on Wed Jul 23, 2008 12:00 AM

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My husband was dx in Dec. of 07 with a gbm iv.  He had surgey on Jan. 2nd with complete as possible removal of tumor.  After 6 weeks of radiation and temader and 3 rounds of 5/23 temedor the tumor is back as of the latest MRI.  My husband is 76 years old and was healthy until our life changed in the blink of an eye.  I know what you are feeling for he too has become verbally aggressive and the slightest remark can set him off and I am blamed and yelled at daily.  I know he is suffering and he says nobody understands what he is feeling and I do not - I am not him - but the roll of caregiver is not really understood either.  This yelling and impatience and being called names and even being threatened once is scarey and really drags one down.  I still want to be here for him even tho he says after 35 years of marriage we can't live together.  I too believe God has a reason for every second of my life and my daughter reminds me He gives me what He knows He and I can handle together.  My strength comes from God and knowing good will come from this and I kind of laugh when I say to God, "this should really be a good one."  I pray you will find complete peace - you and your family are so young to be dealt such a course.  Just kind of live life and let God show you the way - He will.  
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