ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Sue on September 17, 2007, 12:42:23 pm
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Hi Guys,
I had GK in April of '06. My hairdresser noticed some thinning of my hair, which was kind of on top of my head. Today I was fixing my hair and looking at the back of it and I ran the brush from the bottom of my neckline up the back of my head and I saw very clearly a baldish patch just an inch or so above the neckline of my hair and it must be the size of a 50 cent piece (remember those?) I just thought...wow where did THAT come from? Well, I know what caused it, but I just never noticed that before and my hairdresser never mentioned the big thinning spot there. My hair covers it, although I wear it short. Anyone else notice bald or thinning spots after their treatment. I know it can happen, and, hopefully, it'll grow back. I'm just surprised that I didn't notice that before, but I guess I wasn't looking for it.
Sue in Vancouver USA
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Sue,
My sister has never had AN or radiation and she sometimes looses her hair like you described. She has alopecia minor. A very good friend of mine has alopecia major and he is completely hairless. Check it out with your dr.
Anne Marie
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Wow, that's all I need!! ;)
Thanks for the feedback.
Sue in Vancouver
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Yeah Sue, I was told with CK, I might have some hair loss but very minor- I better start checking the mirror myself! Sounds like it takes awhile- I mean didn't you have your treatment done a while back?
This may be a gimic, but my sister in law's girlfriend had thin hair and used a hair spray that had fiber in it to bulk up her hair- I don't know where she found it- but maybe this would be of help.
take care of yourself- Annie
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Hi Pearchica,
Yes, it's been 17 mos! I'm going to ask my hairdresser if he noticed this before. Last year, I thought for awhile that I was getting more than my fair share of stray hairs on my pillow, so I figure that this hair loss happened awhile back, and I just discovered it. It's just not in a place on my head that I looked at very much, ya know? I don't think it's something new...I think I've had it awhile. And in our "everybody's different" approach to our AN problems, I guess one person could be more sensitive to the radiation and baby, the hair must fall, whilst another will not notice any appreciable hair loss.
I'm trying not to let this get to me as it's not that big of a deal...but BUMMER! :( :o
Sue in Vancouver
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Update on the bald spot. I know most of you have been breathless with anticipation awaiting the news. ;D
I went in to my hair guy today and asked him about it. He said..Oh yeah, that's been there for awhile, that's why I keep your hair a little longer in the back. He thought I knew about it, I guess. Anyway, I'm sure it's a result of GK. He said hair was growing in on the spot. He and another of his employees were looking at the back of my head. I'm sure his customer waiting in the chair was wondering what the heck was going on!! :D
Okay...back to your regular programming.
Sue in Vancouver USA
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I had 28 FSR treatments 6 weeks ago which comprised 6 beams around my head. Sure enough, I ended up with 6 quarter size bald spots in the locations of the beams, but I've noticed this week that the hair is starting to grow back in the ones I can see. Do I'm hopeful that my hair will out in those spots totally within a few a months.
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Oh yes, I lost alot of hair. I had to buy two different sized hairpieces. Almost 3 years have passed and some hair came back but I still wear my pieces when I will be seen in public. It's a BIG bummer to say the least. The one thing that you have left is vanity and when the hair goes, it's devastating. But in the meantime I made my way to the best hair guy in Montreal to get a piece to cover the loss and went home and never wore it for months, I was freaked out by it. I was obsessed with knowing whose hair it was and I was terrifie that it was that of someone who had died, all very irrational. But one day everything changed. I had to go out to a special event and I looked in the mirror and realized that you could see my scalp. I ran and found the piece, put it on and that was that. I went on to order a custom piece and am very happy with it. It was a simple act of vanity that brought me back to reality. I had to stop worrying about the hair and start thinking about myself and I cared much more about myself. End of story..
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I guess it's a small price to pay for killing the AN, but still.....it's our hair!! :o ;)
Sue in Vancouver USA
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Hi Sue. Just to let you know, I had a couple of small bald spots develop after a couple months post-CK. But all the hair grew back eventually. So, I'm optimistic that you'll have the same outcome.
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Thanks teasely for the support! Oh, I'm sure it will grow back. I'm just hoping my age isn't much of a factor in how fast that happens! It was just a surprise because I'd never looked for it, so didn't notice it until recently.
Sue
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oh man............. I didn't know about hair loss with GK...I'm supposed to have my treatment on the 29th...now I'm freaking out...What I don't understand either is that they say GK help preserve the hearing and I see that many patients either lost it all or became worse.... ???
That doesn't help... :-\
Well girls, hang on and the hair will grow back ;D
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Pascale,
I'm aware of , but don't have any experience with the SD GK center. I am sure they are probably a very experienced group though.
Thoughts on a couple of your concerns:
Hair loss- Usually occurs when the tumor treated is closer to skull surface such as with a meningioma. It is not common when treated for an AN , but does occur in some folks. Typically it would be in the form of a few small circles which can easily be combed over in most cases. It always is temporary.
Hearing preservation- GK with it's one dose protocol has a slightly higher risk of nerve toxicity than a CK with 3-5 fractions. GK pre-treatment hearing preservation levels are around 50-60% in most studies. CK in a fractionated dosage is usually around 75%.
That said, you might want to contact the San Diego CK center for a consult as well
Best wishes
Mark
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Yes, got the bald spot after fsr but it did grow back.
mema
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My husband asked the doc if I'd lose my hair when we had the consult....and the dr said, no, only when the tumor is close to the surface as Mark stated...
So when I noticed more hair lying about in the bathroom, I thought...well, it's just coming out a bit all over my head and didn't realize it was mostly in that one place right above the neckline on the back of my head. It just sort of surprised me! Kind of a Holy Cow where did THAT come from! :o
Also the same dr (one of the main drs in charge of the GK in Portland) said, "You'll probably lose all of your hearing in that ear, eventually."
On the 15th of this month I have a hearing test scheduled and this is with a audiologist who has her Phd and years of experience. She did a very nice phone consult with me the other day. When I told her what that doctor had said, she sort of snorted! She didn't feel that their level of expertise extended to knowing all there is to know about hearing. And for me, anyway, it's been tricky trying to figure out who to talk to about certain things because our AN is handled by different professionals who are trained for each of the stages that we have to deal with in getting rid of this thing. Right? I hope I'm saying this correctly. I don't think the doctor whose specialty is monitoring and targeting high doses of radiation into your body necessarily knows all about your hearing problems. That's why I called this audiology clinic...(p.s. - NOT A HEARING AID PLACE IN THE MALL, PEOPLE!) and asked...Now what do I do? Am I supposed to have a yearly test? It's been a year since my last one. Of course she is going to be disappointed when I tell her I can't afford to buy a $3000 hearing aid! I'm mostly curious if I've gained or lost any more hearing in that ear and maybe get some tips on tinnitus management.
So anyway...as it is said many times on here...even though we have the same thing we all react differently to our treatments, etc. Hair problems for some, not for others, different manifestations from all these symptoms that can either lay you low or not be much noticable. It's interesting I guess. Yeah, let's say it's interesting! :D ;)
Have a good day and like they used to say, Keep on Truckin'!
Sue in Vancouver USA
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Just thought I'd update my own post. I've come to the late conclusion that what I had was classic alopecia areata. It is probably not directly related to having had GK. The place where the bald spot was, is now filled with white hair. I look like a white tailed deer! Except it doesn't stick up in the back. It's very weird. I went to the Alopecia site and it says this:
AA is not contagious. It is an autoimmune disease in which the body's immune system attacks itself, in this case, the hair follicles. The cause is not known. A person's particular genetic makeup combined with other factors triggers AA.
It's also disturbing to learn that this could happen again. Or not. Maybe this is my one-time experience with alopecia. I hope. Don't you think this is curious that this happened after my AN treatment? Well, a year afterward. But, still. And it's back there, in between the two back pin sites. Hmmmmmm. Coincidence? I wonder..
So now I can add AA to the list. Another "A" thing.
Sue in Vancouver, USA
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Sue:
I had 26 FSR treatments. The oncologist who helped map my treatments told me that 'I might lose some hair'. I groaned (I have a full head of hair) but accepted this as inevitable. The day I was to begin the treatments, he casually mentiioned that he had adjusted the beams/intensity and that I probably wouldn't lose any hair. I didn't. I was very grateful, and I'm a guy, so even I can relate to your angst. :) My barber (a woman who has cut my hair for the past 30 years) has told me that my hair is in good shape, so I'm not too concerned.
Your Alopecia Areata seems to be uncommonly coincidental with your radiation treatment. However, since the exact cause of 'AA' remains unknown, it could well have been 'triggered' by the radiation. I trust the lost hair will continue to re-grow and this won't happen again.
Jim
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I sure hope your right, Jim, because after visiting the AA site, I was momentarily taken aback and quite bummed, actually. My "gut" tells me that this is a one time deal and that I won't have any further problems, because....well, just because I guess! It happened a year after my GK, but still....I am thinking somehow it's s a consequence of GK. In any case, it sure is strange to look at the back of your head and see this one area of white, white hair! I"m letting my hair grow longer in the back, and then it won't be so noticeable as it gets covered up. I'm going to see how that works.
Thanks for your response. Glad you didn't lose any hair. My son, age 35, has genetics against him, and he's already planning on hair transplants! I guess it works, but I wish he'd just accept the inevitable gracefully. My dad was bald, my husband is bald, and I don't think much about it myself. But then, I'm not the bald one, am I? At least not yet!! ;)
Sue in Vancouver USA
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Hi Sue,
My AN doctor said that could be a side effect of radiosurgery. Oh ya, I remember the 50 cent coins, heck.....I remember the silver dollar - YIKES!
I am glad it is hidden. Maybe even your hairdresser didn't know for sure. Has your doctor seen it? My doc said if I did get it, it could be temporary.
Wishing you well.
Mary 8)