GBM - No more chemo

KMPonder
KMPonder Member Posts: 102
in Brain Cancer #1
It's been a while since I've posted. I've been so busy providing full care for my precious hubby. Quick recap for his brain tumor history - 1986/mixed germ cell tumor on the hypothalamus (inoperable, given chemo and whole brain radiation (WBR) in 1987); tumor free and clean MRIs until 2009. Diagnosed 8/09 with Anaplastic Astrocytomas (three, inoperable - largest on cerebellum), more chemo (Temodar) and focused radiation at Duke; treatment was successful and ended 10/10 - these tumors still remain stable; but 11/10 sudden onset vision loss; two PETs/MRI, oxygen therapy, etc...Craniotomy 2/11 determined GBM (inoperable) on the optic chiasm; now completely blind. Had CCNU March/April, tumors continue to spread.

Hubby has decided to not have any further chemo, and I have to honor his wish, since Duke doctor says it is not a cure but will just prolong life. He wants as best quality of life as possible.

Just last week, he started having lots of painful hiccups. Have heard this can be a symptom, but it's a new one to us. Also, he's begun vomiting, 4x this week. Mostly early in the morning after a deep sleep. I really hate this latest symptom for him, because you expect that with chemo, although he was on Temodar a year and used Zofran and had no nausea and was able to eat anything. We are using Zofran again, but it's not helping.

We do have hospice in place, so we are working to find the right meds to curb the nausea/vomiting. Just wondering if others with GBM have had similar experiences, once off chemo.

Comments

  • Rory1987
    Rory1987 Member Posts: 120
    #2
    Im so sorry to hear
    OMG Im so sorry about what you and your husband is going through, Your husband was one of my inspirations, when I read about your husband having WBRT 20 years ago I got inspired and found hope that not everyone who had WBRT will have declines in brain function, I got even inspired when you said that he even became a teacher. Prayers and blessings to you and your family.
  • KMPonder
    KMPonder Member Posts: 102
    #3
    Rory1987 said:

    Im so sorry to hear
    OMG Im so sorry about what you and your husband is going through, Your husband was one of my inspirations, when I read about your husband having WBRT 20 years ago I got inspired and found hope that not everyone who had WBRT will have declines in brain function, I got even inspired when you said that he even became a teacher. Prayers and blessings to you and your family.

    Rory,
    Thank you for saying
    Rory,

    Thank you for saying you were inspired. If you knew him, you truly would be. He has taken a very bad turn, now. His memory has faded him terribly. It's happened rather quickly. His body is weak. Today is the first day he is now showing confusion as to who even I am. It's such a sad, heartbreaking time as his wife. I don't believe he's aware of all the confusion he has. I am at least thankful that he's in no pain, nor anxious. He wanted to beat this thing, and he did for a very long while. He never ever showed any decline in brain function until now, which I suspect by all that is happening is near the end. How I wish one day very soon there will be no more brain cancer, or cancer of any kind. Always stay inspired. Always have hope.

    Kim
  • BabsOregon
    BabsOregon Member Posts: 30
    #4
    KMPonder said:

    Rory,
    Thank you for saying
    Rory,

    Thank you for saying you were inspired. If you knew him, you truly would be. He has taken a very bad turn, now. His memory has faded him terribly. It's happened rather quickly. His body is weak. Today is the first day he is now showing confusion as to who even I am. It's such a sad, heartbreaking time as his wife. I don't believe he's aware of all the confusion he has. I am at least thankful that he's in no pain, nor anxious. He wanted to beat this thing, and he did for a very long while. He never ever showed any decline in brain function until now, which I suspect by all that is happening is near the end. How I wish one day very soon there will be no more brain cancer, or cancer of any kind. Always stay inspired. Always have hope.

    Kim

    Your Husband
    Kim,

    My heart goes out to you. It is difficult to deal with the loss of strength and ability to function but it is much more frightening to be there when your partner is losing his mental capacity. What you are doing now requires more endurance than a marathon - care for yourself and ask for help when you need it. I will be thinking of you. Be strong and remember the beautiful things between you.

    Barbara
  • sweetokielady72
    sweetokielady72 Member Posts: 3 Member
    #5
    KMPonder said:

    Rory,
    Thank you for saying
    Rory,

    Thank you for saying you were inspired. If you knew him, you truly would be. He has taken a very bad turn, now. His memory has faded him terribly. It's happened rather quickly. His body is weak. Today is the first day he is now showing confusion as to who even I am. It's such a sad, heartbreaking time as his wife. I don't believe he's aware of all the confusion he has. I am at least thankful that he's in no pain, nor anxious. He wanted to beat this thing, and he did for a very long while. He never ever showed any decline in brain function until now, which I suspect by all that is happening is near the end. How I wish one day very soon there will be no more brain cancer, or cancer of any kind. Always stay inspired. Always have hope.

    Kim

    Re:Glioblastoma Grade 4: from Brigette in Amarillo, Tx
    My Mother has had Glioblastoma only a few months,but she has it in Grade 4 already she has had 1 surgery and right now she is at Cancer Treatment Centers of America in Tulsa, Oklahoma doing radiation and takes a chemo pill,vitamins,minerals,occupational therapy,physical therapy, accupuncture, she was in a wheel chair when she got there from the tumor it was in her Cerabellum and was 2 inches from front to back just like her 1st one she had removed this is such an aggressive cancer and spreads like wild fire. She is 64. She has us 3 kids I am 38, my sister is 41,my brother is 33 and she has 3 grandchildren. This just snuck up on her one night she thought she was having a stroke half her face was numb and her tongue and she was real tired they did a cat scan and found a tumor they knew right away it was cancerous. Then they did surgery to remove it and they knew when they took it out it was GBM wow we didnt even known what that was now that we do it is such a demon. We believe in God and he is her only hope. Were she is at they treat the mind,soul, and the body which is awsome and her doctor is #5 in the U.S. I am so sorry to hear about your husband. I will pray that he doesnt suffer and isnt in any pain. That you guys can enjoy your time together. God allowed him to live along time with the disease he had wow that is an inspiration. I can only pray that my mom is givin the same grace or God heals her all together. May God be with you in this time and bless and keep you all!

    Sincerley,
    Brigette L.
    Amarillo, Texas
  • msomawas
    msomawas Member Posts: 22
    #6
    Good thoughts on the way to you
    My husband is currently receiving treatment at Duke. Your story does inspire. All my best to you and your husband.

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