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Thread: Dad diagnosed with GBM in his brain

  1. #1
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    Dad diagnosed with GBM in his brain

    Hi all, I am new to this group so not sure if this subject has been discussed recently. My dad was diagnosed with a large GBM in his right frontal region of his brain about 2 weeks ago. He underwent surgery 6 days later to remove the tumor. The Dr told us it was starting to migrate into the back of his brain but he got as much as he could. In the last 2 weeks I am noticing my Dad is getting worse. I am not sure how much of this maybe could just be from the surgery. Anyway, my dad is refusing any further treatment. I am worried that he wonít live much longer if he refuses the chemo and radiation. I see online estimates of how much time one might have after this diagnoses. But most of the estimates are with full treatments. My dad is currently living with me since released from the hospital. But it has been very trying just with him only being here 1 week. He seems to focus on 3 things and talks over and over about them throughout the day. He makes up things in his head and then they become real in his mind. Like saying the Dr said he can drive in two weeks then is going to get his job back and continue working. He thinks he is fine and that he will outlive me. He also canít count money anymore. He canít sign his name legibly and canít remember how to get home or really how to get anywhere. I am not sure if I should just play along with him or keep trying to reason with him which seems impossible right now. Also wondering if anyone elseís family member has refused further treatment and what to expect in weeks and/or months to come. Also have you been able to keep family member in your home or admit to nursing home? And how long did they live after surgery?
    Lost and alone...

  2. #2
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    I am so sorry to hear of your situation. How heartbreaking. I wish I could offer some words of wisdom, but I just joined this group because my husband has brain cancer. This is all new to me too. I thought it would be more active and helpful here, but in light of the fact that no one has offered you anything in two days, I recommend finding a different forum. I would also contact your local hospital and appeal to them for helpful information. Praying for you.

  3. #3
    Does his Doctor know about all that?? Could be swelling in the Brain? Is he on Steroids?
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  4. #4
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    Hello sorry to hear about dad ad his diagnosis. My younger sister age 60 was diagnosed in March with a Grade 4 GBM, inoperable. Has had 30 sessions radiotherapy and 42 days Chemo Stupp Protocol. Is now dyslexic, lost use of left arm very tired and on 2mg Dex daily, what happened next? She is coping very well although confused and cannot stop talking which is unlike her normally. Prognosis not good just extending her lifespan I believe.

  5. #5
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    Hello Elise Sorry to hear of your husband's illness. We are trying to cope with my sister's recent diagnosis so great to know we can talk to others in the same situation. How old is your husband, what treatment is he offered?

  6. #6
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    Play along, he will be much more cooperative if he feels you are being nice

  7. #7
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    Quote Originally Posted by Elise View Post
    I am so sorry to hear of your situation. How heartbreaking. I wish I could offer some words of wisdom, but I just joined this group because my husband has brain cancer. This is all new to me too. I thought it would be more active and helpful here, but in light of the fact that no one has offered you anything in two days, I recommend finding a different forum. I would also contact your local hospital and appeal to them for helpful information. Praying for you.
    Thank you Elise

  8. #8
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    Quote Originally Posted by Elise View Post
    I am so sorry to hear of your situation. How heartbreaking. I wish I could offer some words of wisdom, but I just joined this group because my husband has brain cancer. This is all new to me too. I thought it would be more active and helpful here, but in light of the fact that no one has offered you anything in two days, I recommend finding a different forum. I would also contact your local hospital and appeal to them for helpful information. Praying for you.
    Quote Originally Posted by pinkcat View Post
    Play along, he will be much more cooperative if he feels you are being nice
    Thank you pinkcat I have found you are correct with that.

  9. #9
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    Quote Originally Posted by Elise View Post
    I am so sorry to hear of your situation. How heartbreaking. I wish I could offer some words of wisdom, but I just joined this group because my husband has brain cancer. This is all new to me too. I thought it would be more active and helpful here, but in light of the fact that no one has offered you anything in two days, I recommend finding a different forum. I would also contact your local hospital and appeal to them for helpful information. Praying for you.
    Quote Originally Posted by GodmotherA View Post
    Hello sorry to hear about dad ad his diagnosis. My younger sister age 60 was diagnosed in March with a Grade 4 GBM, inoperable. Has had 30 sessions radiotherapy and 42 days Chemo Stupp Protocol. Is now dyslexic, lost use of left arm very tired and on 2mg Dex daily, what happened next? She is coping very well although confused and cannot stop talking which is unlike her normally. Prognosis not good just extending her lifespan I believe.
    Oh no I am so sorry about your sister. Yes that is why my dad refused any further treatment. He said he will die when it is his time and would rather not do the radiation and chemo. He has gotten even more confused. He has walked out of the house to cash a $450,000,000 lottery ticket that he thinks he won in Kansas and was just going to go walk to Kansas because we wouldnít take him. ( I had a very hard time getting him to come back to the house) Then another day thought a friend won the lottery and had given him a check for $250,000,000. He then couldnít find it ( after me telling him I would take him to the bank if he showed me the check first) so he decided he needed to get the police involved. I was so embarrassed but after explaining to the officer what was going on, he let my dad know that his wife worked with the neurosurgeon that did the surgery on my dad. He explained to him that he knew how important it was to take the meds I am giving him and that he needed to stay inside. Since then he has gone out a few more times. I am so worried because he has also tried to go out in the middle of the night while we were sleeping. Thank goodness he had called my brother in Kansas and told him he was going to be outside waiting for him to pick him up. Brother lives in Kansas and we live in Nebraska. ... My brother thankfully called me and let me know our Dad was going outside at 3:30 in the morning. I have been working with Medicare/ Medicaid to try to get him in a nursing home. I mentioned it to him the other day and he was so mad about us wanting to have him safe in a nursing home and then started crying. So I decided I canít do that to him if he doesnít want to. ... Just trying to figure out what to do next... 😢

  10. #10
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    Good morning. I am so very sorry to hear about your dad's GBM. My husband died from this horrible monster 7 years ago. His tumor was left frontal lobe. He had surgery, radiation, and chemo, all to no avail. He lived 11 months from diagnosis, but never drove, or worked, or got to enjoy playing golf again. I spent those 11 months telling him every day how much I loved him, and went along with the things he said. It definitely affected his brain in many ways. We were married for 40 years! My advice is to love your dad, and let him think the things he is saying are true.


    God bless you both. Fee free to ask me any questions!!!

    Joan

 

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