Anyone else dealing with the side effects of whole brain radiation

RobinY
RobinY Member Posts: 2
edited March 2014 in Brain Cancer #1
My loved one had whole brain radiation following surgery to remove a metastatic tumor. (She had breast cancer that spread to her brain and lungs) She is two years post radiation and is now having cognitive problems.

She has a lot of short term memory problems and even some dementia now. She has done some really strange things and seems to be getting worse very quickly.

Is anyone else going through this?

When we first found out that the cancer had spread, we figured we needed to do everything they said to have the best out come. To be honest I don't remember anyone telling us about these possible side effects.(We heard about the short term effects, but not these longer ones) Now I'm starting to see more information and studies that say WBR causes these side effects in people. One website said "Reports of development of severe radiation induced dementia have varied between 11% in one-year survivors to 50% in those surviving two years."

Is there anything we can do? Our doctor says to just try to stay mentally active, but are there any other resources anyone is familiar with?

Comments

  • Rory1987
    Rory1987 Member Posts: 120
    finished my WBR 2 weeks ago
    finished my WBR 2 weeks ago and so far im experiencing fatigue and my hands are a bit shaky since the treatment, I lost my taste buds and my mouth is really dry.

    I think you could try researching about Hyperbaric Oxygen Therapy, there's an article here about that, and I've read that HBOT is used to prevent WBR radionecrosis (radiation damage)
  • Defischer1
    Defischer1 Member Posts: 3
    Rory1987 said:

    finished my WBR 2 weeks ago
    finished my WBR 2 weeks ago and so far im experiencing fatigue and my hands are a bit shaky since the treatment, I lost my taste buds and my mouth is really dry.

    I think you could try researching about Hyperbaric Oxygen Therapy, there's an article here about that, and I've read that HBOT is used to prevent WBR radionecrosis (radiation damage)

    WBR and my 11 year old boy. 3 months out
    My son had chemo and WBR at MassGeneral in November 2010. He is cured of cancer but the effects of the radiation keep me awake at night. He had focal proton radiation too. Thank you for that tip. Where did you read it? I will dig. Good luck! My son is named Billy.