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

  1. #21
    Yeah we are at MDA. The place they treat him. I had talked to the oncall NO and they told us to come in. Will keep you guys updated. I'm hoping that it's not growing into the Pons, where the breathing center is. In fact, I hope it's not growing at all and it's just some swelling they can take care or with dex.

    I just wish his abscess would heal so that they could start his chemo! :-/

  2. #22
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    I hope they're able to get it sorted out. Another thing that happens is electrolyte imbalances in the blood. Happened to us twice.

    You've probably been told or read that infections are statistically correlated to longer survival time, although very little about this is understood.

  3. #23
    Just a suggestion but I started a journal on my husband AND my son from the beginning. It has been invaluable to me and him. I also take my IPad in with me. It's closed but I start the sound on it. Then I listen to it at home to make sure I didn't miss anything said during the visit. It sure has helped. I also wrote things I notice at home so I can remember to discuss them with the dr. next visit.
    His fight is over. How brave he was. 47 years of love.

  4. #24
    Quote Originally Posted by Marian333 View Post
    Just a suggestion but I started a journal on my husband AND my son from the beginning. It has been invaluable to me and him. I also take my IPad in with me. It's closed but I start the sound on it. Then I listen to it at home to make sure I didn't miss anything said during the visit. It sure has helped. I also wrote things I notice at home so I can remember to discuss them with the dr. next visit.
    Will do that. I kinda just put things down on notes on my phone. Thank you!
    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

  5. #25
    MRI came back - there is a FLAIR on the left medulla and pons region, they are not sure if it's a new tumor or swelling from radiation. They have given him decadron for 3 weeks and then he has to come back for a advanced MRI imaging.
    I Am hoping that it's just swelling. This new lesion is not the same one as the old one it's on the left where as the old one that was radiated was on right medulla.
    I don't think he has the mental capability to hear there is a new tumor.

    Another thing the NO said was that she doesn't want to start chemo because they are not sure how effective Temodar is for brainstem gliomas. And since he has been having issues post radiation, she feels he will have a hard time handling Temodar anyway.
    Brain cancer is depressing. And his NO never has anything good to say, even on good days she has to drop a negative connotation to it. Ugh. Maybe I'm just annoyed it's not taken care of. Hoping for the best in the next three weeks.

    Tbh I'm afraid it's a new one .

  6. #26
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    Oh man. I am so sorry to hear this. Hoping for the best, of course, but it sounds like a discouraging appointment.

    Do you feel up to consulting another NO? I mean, ours was a gloomy gus too (we called him Dr. Eeyore behind his back) but at least he was willing to treat aggressively.

  7. #27
    Idk if she is just not being aggressive or she is just following the advice of the NO that saw us inpatient. I am sure if we had gone to get MRI on the 18th and saw her on the 19th (tomorrow). She would have called it a tumor and started Temodar.
    I mean she didn't tell us last time that temodar isn't showing promising for brainstem gliomas before.

    I think so far I am ok with her, she is just blunt and to the point and the male doc we saw inhouse kinda said things like " presumed tumor since we can't biopsy it". I think he just says things the way we like to hear it.

    Do people get radiation swelling like months later? He finished radiation oct 28th and tapered down dex over the next 3 weeks. And then was off it for all this time. How come this swelling came now?

    Maybe cuz I'm a Med school student I think too much. Idk. I'm hoping it's swelling. I'm just ranting cuz idk who else to talk to. I have to be positive for him and me.

  8. #28
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    The edema can come on pretty much any time. Months later, yes, definitely. With or without tumor present. It's not always related to radiation.

  9. #29
    Hmm ok.... not much improvement with steroids. Then again just been 3 days of 4mg per day. Hoping the three week wait shows just swelling.

  10. #30
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    Could just be "pseudoprogression". Dying cancer cells swell up and cause oedema, brain slow to clear them.
    Wife died from a GBM, November 2012. The full story in this thread

 

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