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

  1. #11
    Hey everyone,

    The MRI post radiation looks good, as the radiation oncologist said, the tumor is "essentially gone" and results are "better than expected". I don't know if he is just trying to be nice or if he always has a positive spin on his way of delivering news. Because my neurooncologist always seems so gloomy. She said it looks like its nearly gone and we will still do chemo, but start it after the abscess heals completely. We have another appointment with her in a week. I think she mentioned something about starting chemo, in jan. She hasn't told us what chemo drug she will be doing yet and to be honest I forgot to ask her. She did mention five days a month oral drug. I asked her is it glioblastoma, she said she couldn't tell me cuz she can't biopsy it, all she can say is that its a high grade glioma. His days post radiation has been ok, he is off dex now, he is tired and has leg and joint pain, seems as a side effect of radiation. I wonder if it has anything to do with tumor lysis syndrome.. need to ask her when i see her. Anyway, that is what is going on. Emotionally its been a rollercoaster ride, he has days when he can't believe his life is cut short, I have days I can't believe he has cancer. I cry it out in the car and come home and encourage and be positive. Life is so different as we know it. Still coming to terms. He wants to do so many things but because I'm a student our funds are limited, I tell him to lets enjoy the simple things. I tend to savor each day. I feel bad that he is looking at beginning of the end.
    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

  2. #12
    Funny we've had similar discrepancy between the radiation oncologist and the NO but inthinknits b/c the NO is the true expert

  3. #13
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    Hey, that's great news!
    Our neuro-oncologist was a gloomy gus too. The job seems to take a lot of them that way.

    The drug he'll be taking is undoubtedly Temodar. I'm surprised he didn't have it during the radiation. It's fairly mild as to side effects compared to other chemo drugs.

  4. #14
    Hey everyone, we are still waiting for the abscess to heal to start chemo. Went to see surgeon and next appointment is in the 19th. However something concerning is happening, past two days he keeps talking about his head feeling heavy and feeling unsteady on his feet. I'm worried it's growing back. I messaged the doc yesterday to know what she thinks. If it is growing back then it's growing back quick since the MRI was in the end of November showing betterment after radiation. :-/

  5. #15
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    Sounds like it could be edema. Is he on Dex right now?

  6. #16
    Quote Originally Posted by GBMsibling View Post
    Sounds like it could be edema. Is he on Dex right now?
    No. He was tapered off over 3 weeks after radiation. Still waiting to hear from doctor.
    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. #17
    Repeat MRI on 18th and NO appointment on 19th. His birthday is on the 17th. Gotta make it a special one.

  8. #18
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    Oh dear, what timing!

  9. #19
    Today the dizziness continues. It's not often just off and on with some headache and nausea and unsteady on left side. waiting to see if I should take him to the ER or just wait till 18th for MRI. Abscess wound need to close, it's about the size of a dime.

  10. #20
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    If it would be the ER of the same hospital that's treating him, that could be helpful, if it's getting worse.

    Edited to add: We had a couple bad experiences going to the emergency rooms of hospitals that were not equipped to handle brain cancer. Bad in the sense of we just wasted our time and didn't really get answers. That being said, obviously in a serious, worsening situation any ER is better than no ER.
    Last edited by GBMsibling; 01-17-2017 at 03:07 AM.

 

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