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Thread: Cancer- the six letter word that changed my life.

  1. #111
    He has been stable for a while now. The past week he seems to be slightly better? His speech is bit more understandable and he can sit without falling. My worry is, is this the ďbetterĒ phase before death?
    Do people toward the end experience a false sense of betterment before they pass away?

  2. #112
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    Plateaus are very common. Without having any medical training but just based on my experience with my sister, here is what I can guess might be happening: The growth of the tumor may have slowed or stopped temporarily, while his brain has rewired itself to do the "lost" tasks in other ways.

    I don't think it has to do with impending death. I don't think GBM normally has a "better" phase before death. But I do know that this rewiring happens in some people, and from what I've seen on the forum it seems that a significant minority of people in endstage GBM will have plateaus.

  3. #113
    Itís been a nice week for us. His parents came to visit and although it was a heartbreaking reunion, he was able to speak to his dad for hours and hours and talk about the people he grew up with and the extended family. It was nice to watch them together just reminiscing.
    Meanwhile health wise he has been kinda having issues with sight. He says things are foggy when he cries a lot or after a lot of movement. Sometimes he gets these twitches on his right arm which is paralyzed. Iím thinking itís cuz he isnít sleeping or resting as much Cuz he is busy talking to his dad all the time.
    Other than that we are in a steady state. Things are working out well with the hospice nurse and bath aide.

  4. #114
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    Glad to hear that the visit went well and that you have good helpers. Sounds like you're in a prolonged plateau and like there's a little focal seizure activity maybe in the arm. He's on anti-seizure drugs?

  5. #115
    yeah he is on gabapentin and ativan .. .thats about it. He seems to have bad days when he stresses too much and it affects his speech.
    Hubby with inoperable brainstem glioma. Dx- 8/30/2016. Finished radiation- 10/28/2016. started temodar 5/20/2017- didn't tolerate it. started avastin 6/24/17. Tumor growth (Glioblastoma) avastin stopped 9/22/2017. Hospice started 9/28/2017. Went to heaven- 3/4/2018

  6. #116

    the way things are

    Been over 3 months since the doctor gave him 3 weeks. We are on a plateau and enjoying time together knowing that it all can change in a heartbeat. He has been hopeful to be able to do radiation in september (2 years from the original), because once he asked his doc about doing radiation and she said they do it 2 years after original.
    I am glad he has the hope to live and these days his tears and crying has decreased. Today he actually watched a movie instead of just sitting around and thinking unwanted thoughts. He has also started to listen to audio bible.
    People keep asking me how do I feel and how i am. I am not sure how I am. Right now I am just functional. Some days I feel like we are in a bubble living in a life and world of our own while real life is passing us by.
    Some days i worry about the future, how i will survive. what i will do with my life. Who will be there?
    I have started journaling to help release some of the stress I feel daily. I used to talk to my hubby about things that bother me and now that is not a option since most of my worry is related to him and I am trying to have it that he isn't stressed.
    Thankfully we have a wonderful nurse and nurse aid that comes, he enjoys their company and sometimes worries when the aid doesn't come exactly on time for his bath thinking she quit.
    He is making all these plans for the future and its nice to see him hopeful, may God grant him the desires of his heart.
    Hubby with inoperable brainstem glioma. Dx- 8/30/2016. Finished radiation- 10/28/2016. started temodar 5/20/2017- didn't tolerate it. started avastin 6/24/17. Tumor growth (Glioblastoma) avastin stopped 9/22/2017. Hospice started 9/28/2017. Went to heaven- 3/4/2018

  7. #117
    oh guys guess what else? Remember i was talking about this dude somewhere in india giving out ayurvedic treatment for GBM?
    Well found out he was arrested cuz he was giving out the same powdered mix for all cancers and deceiving people. Its so sad cuz there are long long lines waiting to get his special medicine.. and he happens to be doing some shady stuff with someone in mexico.. anyhow just thought i would share.
    Hubby with inoperable brainstem glioma. Dx- 8/30/2016. Finished radiation- 10/28/2016. started temodar 5/20/2017- didn't tolerate it. started avastin 6/24/17. Tumor growth (Glioblastoma) avastin stopped 9/22/2017. Hospice started 9/28/2017. Went to heaven- 3/4/2018

  8. #118
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    Huh. THat's interesting. We've certainly heard a lot about that guy here. Glad they've put a stop to him.

    Glad to hear that your husband is continuing his plateau and that your husband is finding some peace in it.

    From the caregiver's perspective, it just is what it is and it probably will be for a while yet... It takes a while for life to return to something close to normal.

  9. #119
    Hey guys,

    Did you or your loved ones take anything for hiccups that seem to be frequent with GBM?

    Hubs been kinda ok. He has this thing called tightness which he says isnít really pain but feels like the muscles are pulling and tight. He has been on fentAnyl and Valium and trazadone but the constipation is horrible with fentanyl.

    What did you guys do for constipation?

  10. #120
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    Senna for the constipation. I can't remember that we ever tried anything for the hiccups...

 

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