Just curious, has anyone who has had brain radiation had permanent hair loss? Any other side effects? I'm going to radiation oncologist tomorrow and I have a feeling he's going to recomend it.
Thanks,
Julie
Hey Julie,
I just got home this late afternoon today, from having an appointment, with my new Radiology Dr. How nice it is to just find you asking questions to something I went through today.
I can share with you what my Dr. had to say to me. Remember now, everyone is different, and how their doctors decide to treat their patients are just as different as well. I mean, In other words. Each patients conditions and therapies are on a very personal, medical, case by case basis only. Keeping all of this in mind, I shall share with you, what I went through today, with my Radiology meeting and such.
My Dr. seems very knowledgeable and took his time talking with me. He explained about what I can expect to happen. etc. He was to the point and explained what would be going on with me, before, during and after all these radiology treatments.
First off. He ordered an MRI for me to have, tomorrow morning at 9:00 a.m. He wanted this done he said, because he wants to make sure we're not dealing with say 30 or more lesions to my brain. Even though, either my PET or CT scans showed only 3 inside my head. That sounded good to me. Better safe than sorry. I already knew I'd be having chemo again, too. My Dr. told me that after my 15 treatments are over with, I shall get 4 to 6 weeks off it. Then another MRI or scans will be done. To see how the treatments did against those brain lesions of mine. There may be a bit of like sunburn places where the radiation is to be directed at, on my skin. Since I am so fair skinned, I will expect that to perhaps happen with me. I read some place, that we'll need to use some good lotion, for dried out skin places on us. I use body lotion anyway. Hr said I'd have no memory loss. Thank God for that. I always called my memory loss, 'chemo fog.' Well, I'll be doing both. So, I sure don't need more memory loss from these radiation sessions.
He did say I'd be loosing much hair. I'll probably be bald for sure. During chemo, I almost lost all of my hair. It is just now growing out. Go figure. I don't care about loosing my hair. Just as long as I can get these lesions taken care of, is all I care about, of course. I also am aware of, that having chemo and radiation treatments, will make me very fatigued. That I am not going to relish. But, it's how it must be. So, be it. Right?
Now, 'if,' say my lesions are either still there, after all has been done, or later they decide to come back in my brain, then he'll do this type of 'surgery' he told me. Really what it would consist of is, higher dosages of radiation to my brain. I am praying of course, that this never happens with me. But, see what I meant by this Dr. being up front with me? I'd rather have that, than the other way around, of not covering it all with me. I want the good and the not so good information about radiation on me.
This afternoon, these ladies there, had me go through what they call a stimulation session. What it was is, they made a mask of my face, and took measurements with machines. This mask, I was told, would be used only for me, at each treatment session. That was kind of neat, on how they did that. This just takes a bit of time. They have to be very exact with those measurements and such.
After my MRI is completed tomorrow, I shall be receiving my first radiology treatment from them. I am to have 15 total ones. By the way. These treatments only last about 15 minutes. So, that's not bad at all. Even if it is to be an everyday event.
I plan on just trying to keep a positive out look, for all of this happening with me, Julie. That's all we can do anyway. Correct? I'm sure you and I will breeze through all this just fine, gf.
I wish you all good things, Julie. May you and your loved ones be Blessed. You take care of yourself, now. Hugs to my new friend.
Love Ya,
Rosie
Savannah, GA.
Stay positive. My dad has had four radiation treatments to the head and 3 to his pelvic area so far! They found a lesion on his brain plus he has them in his lungs and pelvic area. This is all brand new to us since last week. I keep telling him and I mind over matter!!
Best of luck to you all..
I didn't have radiation, so I don't have any advice for you, but I wanted you to know I'll be praying for you as you fight this disease!!! I hope you have minimal side effects from the radiation. :)
Hugs!
Lorie
I completed WBR May 20. I did experience some tiredness and did get hair loss that has not started to grow yet. Good luck!
Hi Everybody - this is my first post as a new member. My husband was dx last October with limited SCLC. He completed his initial treatments (both chemo and rad) in December. He had prophyactic brain radiation inJan, and I'm sorry to say he did loose all his hair. Sideburns, eyebrows, lashes, the works! We didn't think it would be coming back, but sure enough, it is! He is thrilled, not only because his hair is coming back, but it isn't silver anymore - it's brown again! I guess now I will have to color mine. He can't look younger than me!!
As far as side effects, there weren't any to start with. I have noticed in the past couple of weeks, he is having short term memory problems (Where did I leave my beer?). Also, there seems to be something going on with his distance & spatial reasoning. He keeps bumping his head on cabinets, window shades, anything above him.
This is a very small price to pay, however. He just got results from his 2nd followup, and the news is all good!!! His blood work is perfect, and there is no sign of any tumor in his chest.
God bless and best wishes to all. cm
My wife's hair was much slower returning than when she lost it with Chemo. When it returned, it was a totally different texture and color.
Julie,
I had brain radiation as a precaution. No mets found yet. I completed radiation Oct. 08. My Radiation told me side effects, tiredness, hair loss and might not come back at all, or only in spots, memory loss in 6 to 12 months, usually only short term. I was very tired for what seemed like months but I managed to work full time. I lost all my hair, took months for it to start to return and still has not covered completely. I had about 3 weeks around Christmas where my brain would not function right....I could not concentrate or remember how to do things....it was very disturbing but it got better and now I forget words in sentences for several seconds, and names are really hard for me to remember ...but all in all, I can still work and still function normally, I also live alone. Only time will tell if it was worth it for me but I think with sclc, you just do what you feel you have do and I have been good, no treatment since October which I know is a almost a miracle. Bless you !
Debra
Thanks to all who have replied. I'll be putting up a journal entry shortly to let you all know how things are going.
Hugs
Julie
Actually, my hair fell out early on in my sclc radiation treatment. When I had my brain radiation, the doctor told me my hair may not come back. It not only came back, it came back with color. It was gray when I started and it's light brown now. With a positive thought, this was a good thing.
Thanks so much for all the input. Gee that would be great if my hair came back brown LOL I lost it from chemo and is just starting to come back, grey of course! I decided to do the radiation. I got fitted for my mask yesterday. I don't know if it was a bad omen or not but when they got ready to take it off, one of the snaps wouldnt come off! Now I just have to wait until they work up the "coordinates" and call me back to start. As far as the memory loss and cognitive issues, I'm already expierceing them. Onc dr says it is from the chemo, sure hope it doesnt get much worse with the radiation.
{{Julie}}
One problem I did have with radiation to the brain that I haven't seen anyone identify was my ears!! They became so clogged, and my hearing got affected. I als had ear aches. Go figure. But with flushing alot they seemed to get better. I am now a true believer in not cleaning your ears with a q-tip. Anyone one getting brain radiation should ask your doctor about "transient radiation - induced mycloencephalopathy" That supposedly can come after 6-8 weeks of completion of radiation. My oncologist said he thought that was what I had since my headaches were still continuing, some severe. And I have never been a headache person. It can also affect your mood, your level of activity, etc. So anyone having brain rad check it out. Has anyone else heard of this? Jo Ann
Thanks for the info, I will print that out. I've gotten through 5 days without too much trouble. It seems like I read somewhere about the ears being a problem. Right now it's just ringing in the ears, but that's been an issure off and on throught entire treatment process. May I ask if it affected your mood? How so?
Julie
Cathy had whole brain radiation 10 days and on day 12 started seeing hair fall out. She decided to take control and cut it off. Now, 1 month after completion, she still has hair we can see in the back and towards back of top of her head. Seems it is not falling out anymore. She has had no other side effects and did radiation while taking chemo once per week. (Carbo & Taxol.)
Thanks hon, mine is just now growing back from chemo and it's real short so hard to tell if it's falling out or not. LOL not to mention that it's almost white!
jogoldnurse, I looked this up "mycloencephalopathy" and what I could find seemed to relate to horses or cows???
julie,
my mother had 14 wbr treatments and finished nearly a month ago. her hair is completely gone. her memory is really bad. it was bad, then got good, and has finally gone bad again. her radiologist said this was all normal.
today is my birthday, she hasn't even called me yet. it's funny and sad. i gave her the first set of stretch marks (there are 3 of us) and she doesn't even remember!!!!!!!!!!!!!!!!
good luck with your journey, you'll do just fine, i know.
love,
helena
First let me say Happy Birthday Helena. Pretty name I had an aunt by that name. Well I'm at the point where it's mohawk style. Die it black and I'd look just like Mr. T.!! I'm not going to shave it this time. It feels much smoother just letting it fall out. I have finished my treatments and am back at work, but it's hard. About midday I feel sensory overload in my head! Cannot concentrate. We'll see how long I can fool them.
Julie
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