What should I expect from radiation?

I'm starting radiation on my brain Monday. Apparently my remission was short lived because I just found out my breast cancer travelled to 3 small areas of my brain. I've already started taking anti-seizure meds and steroids (yay) and they make me really drowsy. I'm worried the radiation will do the same. Any tips? Hoping to stay active during treatment to prevent fatigue. Any info or tips are appreciated! Thx all.

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  • eakelly's response is pretty accurate. I'm not a month and a half out of 6 weeks of chemoradiation to treat my lesion frontal right. I was 100% up to 3 weeks in, after which my hair started falling out in the areas that I was being treated. I also found myself needing naps fairly regularly, usually 45 minutes to one hour a day in the afternoon. I was also biking 30 minutes every day at that point, which I'm happy to say I was able to keep up until just about the 6th week. After the 6th week, I cut it down to 15 or 30 minutes depending on how I felt, but regained my energy after a few more weeks to get back to my previous energy. Yesterday I was able to participate in a 10km fun run and was feeling great. I would say push yourself reasonably in your workout routine, but expect to have a few lower-energy days, especially near the end. Protein shakes help (I'd make a kale/berry/whey protein supplement shake a day and I found it really helped... but it was also one of the only things I could eat closer to the end due to an unrelated mouth issue that prevented me from eating solids).

    My skin irritation wasn't too bad up til around the 5th week, where I started needing to use Glaxal cream on a regular basis on the areas that needed it. I still use it to this day a few times a day, but now it might be a mix of dry climate and the chemotherapy that is drying my skin. I had lots of dead and dying skin on my scalp for a few weeks after treatment, which eventually i was able to clean away as a fresh new layer came in underneath.

    Full brain radiation?? I didn't even know they did that anymore, my doctors referred to it as an archaic practice. But with radiation anywhere to the head and neck area, I've been told there are long-term risks related to radiation necrosis (from what I understand, scar tissue irritating the rest of the brain) which can cause seizures (which it sounds like you have under control) and other neurological issues (too many to count, depending on where the radiation is applied). So far, doesn't seem to be an issue for me.

    Brain swelling is a definite issue, which steroids can help with (I was able to get off of them, but it was a bit of a grueling process.. thankfully I was able to tolerate the usual symptoms that come from coming off steroids).

    Those were the main issues I've dealt with. If anything else comes to mind I'll drop you a word, or if you or anyone else have any specific questions, please let me know, I'm very happy to share my newfound knowledge and experience. I hope the first day went well !
  • thekimmyest;8674 said:
    I'm starting radiation on my brain Monday. Apparently my remission was short lived because I just found out my breast cancer travelled to 3 small areas of my brain. I've already started taking anti-seizure meds and steroids (yay) and they make me really drowsy. I'm worried the radiation will do the same. Any tips? Hoping to stay active during treatment to prevent fatigue. Any info or tips are appreciated! Thx all.
    I haven't started yet, I'm starting in a week or two but I've been told to expect increasing fatigue as treatments go on, more so in the last few weeks, also hair loss in the areas radiated, skin irritation and brain swelling - you're already on steroids though so that should help minimize that.

    Someone else should chime in because I'd like to know what else to expect as well.
  • I'd help more if I could. I only received chemo in my treatment. My docs talked about radiation with me, though (full brain radiation), because of a brain lesion I had that might have been cancer. There was discussion of fatigue, but mostly memory loss. I have enough of that as it is so I am not sure how it would have been with radiation on top of it.
  • Yes, full brain radiation. I did not have a type of cancer with discrete tumors or lesions. I had leukemia. Right now, I think the doctors believe that my leukemia broke the blood-brain barrier, which caused my brain stem swelling and forced them to put me into a medically-induced coma. Thankfully, chemo alone (while I was in a coma and going through kidney and liver failure) seemed to have killed it off. If the chemo alone didn't address it (in particular with the problems in my brain), full brain chemo would have been used.

    I was an extremely bizarre case. I was treated at MD Anderson, and they had never seen nor heard of anything like my case before. They threw out the book on me and came up with their own methods. So far, it's worked. I'm at 4 1/2 yeas in remission now, and still going.

    My doctors haven't discussed it with me, but I think I might have been within hours of the point where I would not have been save-able. Based on what I've read in my records about my case, I think I was THAT CLOSE to dying.
  • draym104 how much hair loss did you have? My tumor was also in my right frontal lobe. I'm trying to figure out if I should start looking into a wig or just wait and see what happens. I have a feeling I'll get really annoyed with my hair falling out and just up and buzz it all off but I just don't know...
  • From what I understand, everyone responds a bit differently to radiation... Here are a few present-day pictures of my scalp, after a few days of growth since my last head-shave. I've been mainly sporting a bandana nowadays, and am prepared to for awhile since I might be sporting a Novocure device along with my chemo soon which would require me to shave my head every few days.

    --Also forgot to mention that my eyebrows thinned out a LOT during my treatments.

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    Nate- Awesome to hear that the people at MD Anderson were so flexible.. So far, my doctors have not been. Also glad to hear of your success :)
  • Hey all-
    Just completed day 3 out of 20 of full brain radiation. So far, so good. I've been experiencing some tiredness and have taken some afternoon naps but other than that I feel normal. Today I even drove myself to and from treatment. I hate not knowing what the outcome will be but I just have to get through these treatments one day at a time. So far no hair loss but I'm expecting it in the upcoming weeks. Guess I'll be shaving my head again.. FUN! Will keep you all posted- I haven't found too many forums with brain mets so I'll try to keep this one going.
  • Thank you so much for those pictures! Definitely better to prepare myself ahead of time I think.
    Found out yesterday that I'll be starting October 3rd. I'm ready to get this thing going for sure!
  • I'm on Week 2 and going strong. It was great to have the weekend off of radiation. Been feeling shaky, anxious and tired but i'm functioning. It's not that fun but I'm getting through it. I ate an weed edible and it helped wonderfully with the shakes. I'm usually not in to that but it really helped. I would recommended it. No hair loss yet or anything else to report but i'll keep updating as the week continues.
  • Keep it up Kimmy!! Gogogo, we're with you!!

    In lighter news, my eyebrows are growing back, which I'm excited about :)
  • Yes! That is super exciting about your eyebrows lol.

    My hair is just starting to fall out. Day 1 of Week 3. I know I should be prepared for this but it still sucks! Hoping to last a little longer without shaving my head but we will see how that goes. Radiation is otherwise tolerable, my fatigue has decreased significantly but I'm tired pretty early at night. It's nice waking up early though, I do feel like I get plenty of rest. The only other thing that bugs besides my hair is my forehead is getting extremely irritated from the treatment. I've been rubbing some ointment on it to keep it from being dry but i'm not sure how well it is working. There are little irritation bumps everywhere. Very annoying and soon I won't have bangs to cover it. Oh cancer, F U! 2 more weeks or radiation left.
  • thekimmyest;8705 said:
    Yes! That is super exciting about your eyebrows lol.

    My hair is just starting to fall out. Day 1 of Week 3. I know I should be prepared for this but it still sucks! Hoping to last a little longer without shaving my head but we will see how that goes. Radiation is otherwise tolerable, my fatigue has decreased significantly but I'm tired pretty early at night. It's nice waking up early though, I do feel like I get plenty of rest. The only other thing that bugs besides my hair is my forehead is getting extremely irritated from the treatment. I've been rubbing some ointment on it to keep it from being dry but i'm not sure how well it is working. There are little irritation bumps everywhere. Very annoying and soon I won't have bangs to cover it. Oh cancer, F U! 2 more weeks or radiation left.
    How are you doing Kimmy? You must be out of radiation now, did you handle it OK?

    I'm now 2.5 months out of my radiation, and my hair is starting to grow back... very thin for now. Basically just looks like I'm balding. Unfortunately, noone will get to see it as I'm using a Novocure TTF-100A device, which requires me to shave my head every couple of days. Definitely a better trade-off than getting sick, though I'm still doing chemo on top of using the device.