Adult Hair Loss as a Long Term Effect of Childhood Cancer

Rachel1111
Rachel1111 Member Posts: 2
edited March 2014 in Long-Term Effects of Treatment #1
Hair loss during chemo as a child was devestating. I lost it twice; first due to chemo, second time due to stress.
Having survived a "Poorly differiented sarcoma" 1 1/2 years of chemo, radiation and hyperbaric oxygen (and plenty of surgeries) led me to believe that perhaps I was finished with cancer. Not so! As you all know, there are many long term effects: depression, physical limitations, fertility issues as well as general well being. I NEVER expected to have hair loss as a long term effect. Is anyone else experiencing this? I am a 38 year old female; 25 years post chemo and other treatments. I'd love to hear from any and all who might be experiencing any hair loss for which your doctor is unable to determine the cause. All the doctors I've seen have been unable to diagnose or definitively determine the cause of my hair loss; wondering if any other long term survivors might be experiencing. Looking forward to hearing from you!

Comments

  • britchick356
    britchick356 Member Posts: 45
    #2
    I don't know the answer about long term hair loss,it happens to alot of people.I was devastated when I woke up to a pillow of lost hair during chemo. After my buzz cut, I decided that the wig thing was a good option. There are many options in hairpieces that may help.I have heard of some women trying Rogaine, but I don't know what the results were. Cyberhugs and Good Luck!
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #3
    Hi,

    I'm not a "long term" survivor since I was just dx last year and I have no pat answer either but I have been loosing my hair since I had my first child at 26 years old. I have put it down to hormones. Of course I was worse during chemo. I didn't loose all my hair but it has thinned out. I got a short hair cut so nobody noticed the thinning. There are some products that salons say are good for hairloss during chemo. It is one option for you. Also, not sure how big you are on natural remedies but maybe you could find a naturopath in your area (doctor that uses natural remedies) or a pharmacy that handles natural remedies. The pharmacist might help. Good luck and keep us updated with what you find. It might help others on all the boards. HUGS.

    Lisa F.
  • jlfmiller
    jlfmiller Member Posts: 4
    #4
    I am 72, female, & have been in remission from rectal cancer for over 2 years. When I had chemo, I was supposed to lose my hair, but for some strange reason, I didn't, although it got extremly thin. Now, I am losing my hair---this started about 2 months ago. First, there was just one spot (size of a nickel) that got very red and then the hair came out. But now, that spot has gotten bigger and more small spots are starting. Plus, my hair is slowly getting very thin again, just like it did when I was on chemo. My oncologist says this is not from the effects of chemo. My primary care doctor tried antifungal pills for two weeks, but this didn't help at all. My throid condition was checked and present medication is OK. My next step is to see a dermatologist, but couldn't get in until the end of January, so hope this doctor has some answers. I know from doing research on the web that there are many reasons for hair loss, but all I know is it is very frustrating.
  • SherryinIL
    SherryinIL Member Posts: 1
    #5
    Did you get your Thyroid levels checked, including adrenal functions?
  • Paul86
    Paul86 Member Posts: 1
    #6
    Hello,
    Anagen effluvium
    Hello,

    Anagen effluvium occurs when a hair follicle’s mitotic or metabolic activity is impaired. This is commonly associated with chemotherapy. Since chemotherapy targets your cancer cells, your body’s other rapidly dividing cells - such as hair follicles - are also affected. I pulled this from http://www.hair-lossproducts.org/?Page=womens-hair-loss&inkey=content_3

    Have you considered Surgical Hair Restoration?
  • divid
    divid Member Posts: 1
    #7
    I'm so sorry to hear about
    I'm so sorry to hear about your situation. I'm not sure if it will help in your case but provillus can be helpful in some instances of hair loss. Its probably only a long shot though but may be worth investigating.
  • Unknown
    Unknown
    #8
    This comment has been removed by the Moderator
  • jessa007
    jessa007 Member Posts: 1
    #9
    Rachel,
    I came on the
    Rachel,
    I came on the internet today looking for the same answers you were looking for in 2006. I would love to know where you are at now (you and your hair :).
    I just passed my 7th yr "anniversary" of my diagnosis of leukemia, I am a month away from being 5 years out from my last treatment and shortly after that I will be turning 23 years old.
    Sometime between this summer and the beginning of this fall semester of school my hair began to thin; I have now lost approximately 2/3 of my hair. I just got the lab results done, everything that could cause it was normal and it has been declared post-chem/radiation hair loss. At this point I don't know if it will continue or if it will be permanent, as it has seemed to slow down. That's all i know; this is the first hint of something that I could find online, so again my sister survivor, I would love to hear what the past 4 years have looked like for you hair-wise, if you are willing to share.
    Thanks, Jessa
  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
    jessa007 said:

    Rachel,
    I came on the
    Rachel,
    I came on the internet today looking for the same answers you were looking for in 2006. I would love to know where you are at now (you and your hair :).
    I just passed my 7th yr "anniversary" of my diagnosis of leukemia, I am a month away from being 5 years out from my last treatment and shortly after that I will be turning 23 years old.
    Sometime between this summer and the beginning of this fall semester of school my hair began to thin; I have now lost approximately 2/3 of my hair. I just got the lab results done, everything that could cause it was normal and it has been declared post-chem/radiation hair loss. At this point I don't know if it will continue or if it will be permanent, as it has seemed to slow down. That's all i know; this is the first hint of something that I could find online, so again my sister survivor, I would love to hear what the past 4 years have looked like for you hair-wise, if you are willing to share.
    Thanks, Jessa

    Thyroid
    Hi jessa

    Go back and have them check your Thyroid levels again, right at 3years or so I started having problems and that is what is was, sometimes they will pass right over the thyroid looking for something else.

    Hope you find the problem
    Hondo
  • Emmi123
    Emmi123 Member Posts: 2
    #11
    britchick356 said:

    I don't know the answer about long term hair loss,it happens to alot of people.I was devastated when I woke up to a pillow of lost hair during chemo. After my buzz cut, I decided that the wig thing was a good option. There are many options in hairpieces that may help.I have heard of some women trying Rogaine, but I don't know what the results were. Cyberhugs and Good Luck!

    WELL.....HAIR LOSS HAS BEEN
    WELL.....HAIR LOSS HAS BEEN A BIG PROBLEM SINCE THE TECHNOLOGY HAS RISEN......I WOULD SAY IT IS MORE BECAUSE OF THE RADIATION WE GET THESE DAYS.....ALSO MANY BRAIN CANCER DISEASE HAVE BEEN RISEN........I WOULD LIKE TO MAKE A POINT THAT IF WE COMPARE RURAL WHERE TECH IS NOT MUCH THERE THEY DONT SUFFER FROM HIGH STRESS AND HAIR LOSS KIND OF DISEASES. I THINK SIMPLE Hair loss treatments WOULD BE EITHER CHANGING THE ENVIRONMENT OR DECREASING THE USE OF FAKE COSMETICS AND HIGH RADIATIVE GADGETS.
  • jelclark
    jelclark Member Posts: 1
    #12
    jessa007 said:

    Rachel,
    I came on the
    Rachel,
    I came on the internet today looking for the same answers you were looking for in 2006. I would love to know where you are at now (you and your hair :).
    I just passed my 7th yr "anniversary" of my diagnosis of leukemia, I am a month away from being 5 years out from my last treatment and shortly after that I will be turning 23 years old.
    Sometime between this summer and the beginning of this fall semester of school my hair began to thin; I have now lost approximately 2/3 of my hair. I just got the lab results done, everything that could cause it was normal and it has been declared post-chem/radiation hair loss. At this point I don't know if it will continue or if it will be permanent, as it has seemed to slow down. That's all i know; this is the first hint of something that I could find online, so again my sister survivor, I would love to hear what the past 4 years have looked like for you hair-wise, if you are willing to share.
    Thanks, Jessa

    jessa007
    hey, i have the exact same problem as you, including many others. This september was the 15 anniversary of my last treatment! I have lots about 2/3rds of my hair too. i have had all the hormone tests, apparently everything is fine, but i dont think it is as i have loads of problems with what they say is PCOS...
    have you found any more out about hair loss post cancer?
    (i have had my hair down to my bum as an up you to cancer but now it is just too thin! loosing hair once is bad enough, but twice!! FML seriously!
    thanks for your help!
  • cathymom
    cathymom Member Posts: 3
    #13
    jelclark said:

    jessa007
    hey, i have the exact same problem as you, including many others. This september was the 15 anniversary of my last treatment! I have lots about 2/3rds of my hair too. i have had all the hormone tests, apparently everything is fine, but i dont think it is as i have loads of problems with what they say is PCOS...
    have you found any more out about hair loss post cancer?
    (i have had my hair down to my bum as an up you to cancer but now it is just too thin! loosing hair once is bad enough, but twice!! FML seriously!
    thanks for your help!

    hair loss side effect from radiation
    I've also had recent hair loss. I suspected it was from the radiation I received for Hodgkins Lymphoma in 1980, but now you all have confirmed it! I mistakenly thought it may be due to hormones because I am 45 years old. I have a host of other side effect issues due to the radiation (31 years later) so hair loss is the least of my worries. But, if anyone discovers a way to grow it back, please let me know. Thanks! P.S. Glad to know you all are out there!
  • mchenier
    mchenier Member Posts: 1
    #14
    hair loss

    I had chemo and radiation from the age of 2-6. now i am 38 and my hair is rapidly falling out. I have had all the test done and was told all my levels are nomal. I am so self concious about my hair that i have to wear extensions that hurt my head but its getting to the point that the extensions are hard to hide. someone please help

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