ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: BeJoi on May 25, 2007, 11:30:57 am
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Hi Everyone,
I went in today to be fitted for the face mask used for the fractionated radio therapy I'll be doing on the Trilogy System. I felt like I looked like Hannibal Lechter or Jason with that mask on. What a hoot! ;)
The representative told me that I would probably lose hair in the spots where the different beams of radiation enter the head ???. She said it wouldn't be a lot of hair loss, but that I should expect it.
For those of you who've done longer term fractionated therapy, did you experience any hair loss? For those women with long hair, was the hair loss very noticeable?
Thanks for sharing experiences,
Beverly
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Beverly,
I can't speak for the radiotherapy machines with the longer fractionated protocol, but with CK hair loss can occur but is uncommon with an AN. Hair loss is more common with tumors such as menigiomas where the treatment is closer to the surface. I'm not sure at what frequency it occurs with machines like trilogy or Novalis, but I would suspect it will beminor and temporary. Here are couple of links to discussions on the CK board on hair loss which might be helpful
Mark
http://www.cyberknifesupport.org/forum/default.aspx?f=14&m=11384
http://www.cyberknifesupport.org/forum/default.aspx?f=12&m=3319
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FSR- in 2006-25 Sessions-No Hair Loss Thier were days though towards the end like I felt I was Zapped with Radiation. Ron
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It's very rare to lose hair with the fractionated 25 stereotactic treatment. If it should occur it would be where the beams enter and if it should it grows back....I had 25 linac and my rad team said not to worry about that... what i did have was a tender scalp and used baby shampoo for a few months and didn't scrub too hard... hope that helps...i have all my hair.
all the best,
W.
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Had 25 FSR treatments. Have long hair. Loss of hair about the size of a quarter, where I assume the beam hit. Couldn't tell with my long hair, because it was close to the scalp and the hair over covered it.
mema
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For those of you with 25 or more treatments, how was your energy during the treatment period? And how has your hearing been? Were you able to maintain whatever hearing you had before the treatment? Anything else you'd like to share that might be of help to me, I'd greatly appreciate.
Thank you all for your responses.
Beverly
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Beverly,
Six months after FSR I lost about 90% hearing in my AN side. The radiologist oncologist and ENT were surprized. They said it usually happens over a number of years. I am 17 months later and my hearing hasn't gotten better. Although reading other posts it seems most people don't loose their hearing. Or it remains the same. Oh by the way my bald spot the hair did grow back.
mema
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I'm sorry to hear that you lost so much hearing. That doesn't seem the norm as far as I can tell, but I know it's always a possiblity. It may have more to do with how close the tumor is to the auditory nerve. I'm hoping for the best and will see.
Beverly
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I lost 30% hearing from FSR-now at 10.5 months out. This surprized me since I felt that it would not crash this soon. I can hear but only through use of a hearing aid. Sounds are still distorted and muffled. The other day I heard a train come through town-I though-now what is that. I finally figured out it was a train of course. Sounds are not the same as normal hearing-the pitch and range. However I am an NF2 and my only hearing ear is the affected AN ear where I got 25 sessions of FSR. My first tumor in 1988 took 50% of my hearing right away and human speech-especially women was so annoying that it felt like someone taking their fingernails down a chalk board. That all ended when they removed the tumor and left me deaf in that ear. That was back of course in 1988 so I lived with SSD for 18 years and took that as normal. Now w/o hearing aid I cannot hear anything-and if I do it is very faint. Thanks-Ron
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I have asked Dr Medbery and Dr Spunberg re hair loss....both said is very rare, but will sometimes happen depending on where the tumor is located...closer to the skull more likely to happen....
it shoudl grow back quickly according to them......
Ceecee
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I checked with Dr Medberry and Dr Spunberg at the CK site..they stated that there is a slight chance of losing some hair..primarily at site of treatment and that depends a lot on where the tumor is that is being treated...ie; closer to the outside of the skull, more likely chance of losing hair....it should, if it is going to happen start at around 2 weeks, and begin growing again shortly thereafter.....
Ceecee
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Hi Beverly,
I can only answer from Cyberknife personal experience... I have waist-length hair... and only lost a dime-size amount on my front hairline that was used as beam-target from treatment. There was no need for me having to compensate for the minimal loss as it was well concealed on the hairline. It looked like my hairline has slightly (and only slightly) receded less than a dime amt. For me, it occured approx. 4-5 mos post treatment and grew right back.
Phyl
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Beverly
I had 30 FSR treatments in 2003 and did not loose any hair. My energy level was unaffected (despite having to commute an extra 50 miles each day for the treatment). I continued all of my work and other activities as normal throughout the 6 weeks. I had about 40% hearing left in my affected ear when I started treatment and it did not deteriorate after FSR. I am now on an every 2 year scan and check-up schedule. I have no regrets about the treatment approach and have been very satisfied with my results.
Best wishes,
Ron
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Thanks, Ron. It's so nice to hear about positive outcomes and side effects. I'm glad you're doing so well,
Beverly
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HI BeJoi: Stanford cyberknife graduate here- no hair loss although I was warned I might see more hair in my brush.. never happened though. Hope this finds you in good spirits and health- Annie