"JoeyPup 1" please reply to me

lindadanis
lindadanis Member Posts: 235
edited March 2014 in Brain Cancer #1
You typed to me last week regarding brain mets from esphogeal cancer and radiation. I need to know more about it and you mentioned you are a nurse caring for someone with this situation. I am a wife, caring for my husband, who just found out he has a brain met to his cerrebellum part of his brain and is doing whole brain radiation this week. He is doing a total of 15 treatments and has been in bed since starting radiation, he has had four treatments so far. Can you please write to me with any info on this subject. I live in Mass. where do you live, how old is your patient, any problems with whole brain radiation>

thanks so much for trying to help me.

Linda

Comments

  • stayingcalm
    stayingcalm Member Posts: 650 Member
    #2
    not joeypup1
    I'm not joeypup1, but I did have brain surgery followed after a couple of weeks by 20 sessions of WBR.

    The radiation wasn't pleasant - I hated the mask, and to this day still recall the vile taste/smell I experienced during every treatment - but each session was over quickly. Before my treatment, the radiology oncologist told me that there were some reports of short-term memory loss from WBR, but she also said that the studies were done on an age group that may have been experiencing memory loss prior to the WBR.

    Well, a few months after the WBR I started noticing how often I was losing things around the house, forgetting to do planned things, getting sidetracked easily (especially, I would go on the web to look up something specific and totally lose track of what I was looking for), etc. This has eased up somewhat in the months since, but I have to make an effort to stay focused on what I'm doing, and can no longer multitask. Some of this might be just the product of an aging brain, or it could all be from the radiation - there's really no way to tell.

    Anyway, I'm no longer so casual about suggesting WBR to people, at least not as a precautionary measure as some oncologists prescribe it (I already had brain mets).

    I lost my hair for the second time, and just last month I shaved off the new growth because it was coming in so crazily, in patches where I also had focused radiation, but that's a small price to pay (and probably partly due to the Tarceva I've been on since the WBR).

    I'm a year and 1/2 post WBR, and my brain MRI just came back clean, my CT lung scan, too. Guess I can't argue with that :)

    *edit - I failed to mention the fatigue! The exhaustion that came with the WBR was pretty severe. I was also on steroids to reduce swelling after my surgery, so my hip joints were uncomfortable and my muscles weak. That's gone, now, my strength is coming back and my joints are fine. My original tumor was in the parietal lobe, btw.
  • lindadanis
    lindadanis Member Posts: 235
    #3
    stayingcalm said:

    not joeypup1
    I'm not joeypup1, but I did have brain surgery followed after a couple of weeks by 20 sessions of WBR.

    The radiation wasn't pleasant - I hated the mask, and to this day still recall the vile taste/smell I experienced during every treatment - but each session was over quickly. Before my treatment, the radiology oncologist told me that there were some reports of short-term memory loss from WBR, but she also said that the studies were done on an age group that may have been experiencing memory loss prior to the WBR.

    Well, a few months after the WBR I started noticing how often I was losing things around the house, forgetting to do planned things, getting sidetracked easily (especially, I would go on the web to look up something specific and totally lose track of what I was looking for), etc. This has eased up somewhat in the months since, but I have to make an effort to stay focused on what I'm doing, and can no longer multitask. Some of this might be just the product of an aging brain, or it could all be from the radiation - there's really no way to tell.

    Anyway, I'm no longer so casual about suggesting WBR to people, at least not as a precautionary measure as some oncologists prescribe it (I already had brain mets).

    I lost my hair for the second time, and just last month I shaved off the new growth because it was coming in so crazily, in patches where I also had focused radiation, but that's a small price to pay (and probably partly due to the Tarceva I've been on since the WBR).

    I'm a year and 1/2 post WBR, and my brain MRI just came back clean, my CT lung scan, too. Guess I can't argue with that :)

    *edit - I failed to mention the fatigue! The exhaustion that came with the WBR was pretty severe. I was also on steroids to reduce swelling after my surgery, so my hip joints were uncomfortable and my muscles weak. That's gone, now, my strength is coming back and my joints are fine. My original tumor was in the parietal lobe, btw.

    thanks for writing to me
    thank you for writing to me about whole brain radiation, did you first have lung cancer that met to the brain? Do you remember how many sessions you had for treatment, radiation treatment? I noticed the fatigue is horrible, he has been in bed all day and most of the night due to radiation, he had four treatments this week, is this normal, also he has been put on steroids to keep the brain from swelling, were you on any?

    Linda
  • stayingcalm
    stayingcalm Member Posts: 650 Member
    #4
    lindadanis said:

    thanks for writing to me
    thank you for writing to me about whole brain radiation, did you first have lung cancer that met to the brain? Do you remember how many sessions you had for treatment, radiation treatment? I noticed the fatigue is horrible, he has been in bed all day and most of the night due to radiation, he had four treatments this week, is this normal, also he has been put on steroids to keep the brain from swelling, were you on any?

    Linda

    Oh yes, the steroids
    Yes, I was on steroids, long enough for my face and feet to swell - I thought that it was a little odd that they give it to you to prevent brain swelling, but it causes swelling elsewhere :/ I kept bugging and bugging my radiation oncologist to allow me to stop taking them, and she finally allowed me to taper off them at the end of treatment...

    Yes, I have NSCLC, and while I was on a clinical trial drug the brain mets snuck in.
    As far as the WBR, I had 20 sessions, then 5 sessions of tomo-therapy, focused on the 2 mets that were not surgically removed.

    For some reason, WBR is particularly fatiguing, I'm pretty sure I wasn't so exhausted back when I was having chemo and lung radiation. Somehow, I managed to continue working through part of the WBR but my swollen feet and utter exhaustion finally forced me to take a short break.

    The upshot is - I'm fine, now - I would feel perfectly well if it weren't for my COPD!

    Best wishes,
    Deb

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