Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by Emmwitz on Tue Jan 01, 2013 03:48 AM
by KPANDBP on Tue Jan 01, 2013 01:28 PM
It depends on the treatment, but my wife only lost hair behind her ears and it was hardly noticeable it grew back within a few months. Good luck I hope all goes well for you.
by siblingof on Tue Jan 01, 2013 02:28 PM
by Randy1958 on Tue Jan 01, 2013 04:58 PM
My name is Randy. I was diagnosed with GBM last February. I had proton radiation for 33 days (the proton itself was painless), and the only hair I lost was along my left temple, above where the tumor had been. I know this whole thing is scary, but there are a lot of wonderful people here who are very knowledgable about this sort of thing, so don't hesitate to ask questions. I've felt a lot better since coming across this site.
Have you been fitted for a mask?
by Emmwitz on Tue Jan 01, 2013 06:37 PM
by ws1953 on Tue Jan 01, 2013 07:22 PM
On Jan 01, 2013 3:48 AM Emmwitz wrote: I'm Emma I'm 15 I'm going to start 6 1/2 weeks of radiation therapy for brain cancer. It's my first time I'm very scared can anyone just let me know their story with how much hair they lost and how long it took to grow back, if you think it'll be permanent. Also it's procure radiation if anyone has experience with it'd that'd be nice to hear about to. Thank you so much
On Jan 01, 2013 3:48 AM Emmwitz wrote:
I am sorry to hear about your brain cancer but I wish you a fully and speedy recovery. This site is very good. I exchange messages with some of the most courages people. It is very informative site and people share their experience in a positive manner which helps patients and their families.
Good luck and keep us posted about your treatment.
by Randy1958 on Wed Jan 02, 2013 12:00 AM
On Jan 01, 2013 6:37 PM Emmwitz wrote: No I haven't been fitted for a mask yet, I have my first consultation with them Thursday and then we'll start radiation from there
On Jan 01, 2013 6:37 PM Emmwitz wrote:
My first session was actually a "dry run"; that is, nothing happened, the docs just spoke to me and my wife, we got to see the proton equipment and the table I'd be laying on. The room was cold so I asked them for a blanket. They'll leave the room when you receive your treatment. No big deal; they'll be monitoring you by camera.
If they make your mask the same way they did mine, it'll be made from a mesh, air permeable, snug but not tight. The mask will be fitted while "wet" and will harden, a process that takes about fifteen minuts or so. After they remove it they'll modify it if you like, that is, cut eye holes and nostrils; I asked them to cut away some space for my Adam's apple -- I absolutely cannot stand ANYTHING making contact with it. I won't ever wear a necktie for that reason.
My mask was held on by six "grommets", three on each side of my head. The treatment time varied but I don't recall being in the room for longer than a half hour. I wasn't concerned about being trapped under the mask; when the docs weren't looking I reached under it and lifted one corner, so I knew I'd be able to break out of it if need be. Fortunately I'm not claustrophobic; wearing the mask can be very distressing for some people. Usually I just relaxed and let the docs do their thing; I even fell asleep a few times.
Following my final treatment they let me keep the mask. My wife suggested I split it in half and display it on the wall. No thanks. It would make a hell of a conversation piece, though. I have it squirreled away in the garage.
You'll be fine, there will be a lot of people with you in spirit :)
by jon4156 on Wed Jan 02, 2013 12:45 AM
Emma, you should do fine so don't stress out about the therapy. Radiation is initially provided in low doses and the dosage increases over time so the effects will not be immediately noticable. You will start losing your hair about two to three weeks into radiation therapy, slowly at first but increasing in quantity as the therapy progresses. Contact the American Cancer Society to located a participating hair stylist that can set you up with a free wig. My wife chose to simply wear kerchiefs instead.
Your hair loss will not be permanent. Approximately 4-6 months after your last radiation treatment your hair will begin growing again and be baby soft. You will be amazed at how coarse any original leftover hair feels compared to the delicateness of the new hair. It will all come back to whatever length you normally keep it.
When you first notice your hair falling out it can be upsetting, but being prepared for it and knowing that it is only temporary will help you cope more easily. The world is much more sensitive these days to people in your position so you should find the vast majority of people you interact with very accepting of your new hair-do.
The only effect my wife experienced with her radiation was occasionally "seeing" blue flashes in her mind during the therapy. The therapy itself is painless.
by plener on Wed Jan 02, 2013 11:23 PM
my prayers are with you
i am 72 years old glioblastoma stage 4
my hair grew back after 7 months
the radiation will make you fatique fight it with all you have--it will make you very tired--fight it again--if you are on steroids keep yourself very very active.
emma kick radiation butt---walk tube stretching and there will be fatique--listen to what your body asks to do
by miamivice on Wed Jan 02, 2013 11:56 PM
First off, sad to hear about your illness. You are far too young but unfortunately, cancer doesn't discriminate. I mostly lost my hair on right side of head where tumor was but it got thin all over. It took around 3-4 weeks beofre it started happening. Hair has grown back now (my radiation treatments ended in June 2012). Being a guy, I shaved my head anyway in the beginning. The hari on right side of my head does not cover up my big upside down "U" scar so maybe the pageboy approach mentioned by another poster would help. The radiation treatments were no problem for me. I did feel like I had a tiny, tiny sunburn where the tumor location was and where they target the majority of the radiation. I used lots of pure coconut oil. Take care of yourself, lean on God.
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