Is it the steroids or the brain radiation?

KsGal · 01-07-2013, 04:55 PM

Well, Im on treatment 10 out of 14 whole brain radation. Im on steroids three times a day, lortab for pain if my head hurts (which really isnt much), and lorazepam to bring me down enough from the steroids to sleep, relax.
Ladies...Im thinking that these big dose steroids are a real pain in the butt? I look like Betty Boop with huge cheeks and a little bow mouth. Im bald, and my scalp is just killing me like I left it laying out on the beach in 100 degree weather for, I don't know, a week? Im stiff, Im sore, my muscles aren't acting right, and Im kind of in a weird daze most of the time. Im doing most normal daily stuff, but I just feel weird as all get out. So my question is for those of you going through or have been through it, is it the high dose steroids or the brain radiation, and when does it start to get better? When I finish the treatments or when they taper this stuff down enough? Excuse my little whiny rant...I just wondered when you start feeling semi like yourself again, or if anyone else had this type of experience with the whole brain in the clouds sort of thing. I did steroids for chemotherapy, but that was just a few days low dose. This 4 mg three times a day is making me feel like a nut case.

SoCalGal · 01-08-2013, 05:33 PM

I am gonna guess, "c" all of the above...I don't have first hand experience w/WBR but steroids FOR SURE make me crazy. Emotional, crazed, out of control feeling, stay up all night and clean buzzed and then taking ativan to bring you down, get some rest, etc. Just that regime alone would leave one not feeling well. Add in some RADIATION to your brain, and I think it's got to be super tough. I've had several rounds of rads to my body and I know that it takes about 2 weeks post rads for the body to START to heal and then 5-6 weeks to START to feel normal again. Again, I don't know if it's the same for brain, but I'd say that you are almost done with the rads so that's a great thing and then on to the healing. And hopefully you can soon be weaned off the steroids...
Keep fighting!!

tammymarie1971 · 01-08-2013, 07:43 PM

So sorry you have to feel like this on top of everything else you're going through!!!! I don't know about wbr but I know the steriods make me a nut case...cleaning all the time, jumpy,warp speed (almost) for everything and then I have this crazy aversion to going to bed..and of course there is the good old eating...eating...eating...and so on. However I suspect that the swelling you would get from not taking the steriods would be worse....All I can say is hang in there...maybe someone else has some suggestions, but I just wanted you to know that you're not crazy...Just grab tight and hang on!!!
Tammy

KsGal · 01-09-2013, 01:36 PM

Thank you, Ladies. Im glad to know I am not losing it, because I seriously sometimes feel like I am. Seems like the day are turning into one endless stream of eating, eating, cleaning, cleaning, bouncing around the house. My poor little brain isn't functioning quite right, so finding words for conversations or writing has been difficult.
Luckily, three treatments left on the whole brain radiation, and today they said I can reduce my steroids down to twice a day and see how I handle that. This sure all is a crazy ride. ((hugs))