Hair loss ten years after chemo

mazc
mazc Member Posts: 2
edited August 2022 in Breast Cancer #1

Hi - I am posting this a bit greedy and needy as in I've just found this place and now I'd really like to gather some info Smile

I had breast cancer when I was 36.  It has been a horrible 10 years but you get there.  I don't think anyone really gets that.  But anyhow, I can kind of cope with all the depression, anxiety, all that that I seem to have been plagued with despite being told how lucky I am and all that from day one to now, but you know...   I've raised two kids, 5 and 2 when diagnosed.  So I'm not a whinger.  Well, I don't think I am.  Maybe I am.  Who knows on a scale of one to whatever. 

Thing is, obviously lost all my hair through the chemo back then but now my hair is all falling out.  I don't mean like 'shedding' I mean my kitchen tiles are covered in my hair, food gets full of my hair, my bath tub and shower are full of my hair.  My sink is full of hair and I only stand there to do teeth, hands and makeup!  My pillow is covered in hair.  My desk is covered in hair and my vacuum cleaner is clogged... yes, with my hair!

I have been to a dermatologist and he was almost looking for a reason and decided I was stressed.  Er, like I might have been stressed at all the other points between now and then since my diagnosis with income loss, two far less indepent kids and so on!

I'm wondering having done some research that this might be a thing these years after chemo?  I 'think' I see new hair coming through but it's been going on for a year and I'm getting pretty bald now.  Hair loss is all over not just the top.  (Dermatologist was all how I was nearing menopause and having female  pattern hair loss and wanted to sell me Regaine (Rogaine in US).  

So basically you lose all your hair, your hair grows back at the same time when normally your follicles would be in a cycle of some on and some off, so not so noticeable, and then, after your hair (which according to websites I've read lives between eight and ten years) gets to the end of it's days, it then all kind of falls out because it all grew at the same time?  Speculation but if others have had this, I'd feel way happier if you have good outcomes afterwards, like it does grow back?

I know it sounds weird but maybe this lovely* experience has not been tracked or noted before generally as a pattern because frankly it's only the last couple of decades that we have survived longer than one hair cycle?  Smile  Great news, but life with no hair as a 40-someting woman is going to be tough because NOT ill!

Just think the hair doctor dermatologist guy had no idea and despite knowing my history didn't even relate this to that.  Seems odd since it seems kind of likely?

So I'm just kind of doing a survey here I suppose.  Any other chemo hair loss folk found that eight to ten or so years later you've had massive hair fail? 

Thanks, MazC x 

*soul destroying and self-esteem bashing Wink

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Comments

  • mazc
    mazc Member Posts: 2
    edited September 2016 #2
    Quick correction!

    I put smiley faces in but they have come out as HTML so don't know about that

    Sorry for the it's not its at one point - I'm an editor.  Hate that stuff! :-) 

    I should have added that, yes, I am grateful for being alive and all that, but keeping it going with long-term lack of anyone really giving a damn and working just to pay for kids and a disabled husband to boot, the hair thing isn't just a vanity issue for me.  I really feel grim.  Thanks for reading and hope you get how a 'little' thing in the scheme of life can have massive impact on a person. 

     

    Mazc x 

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited September 2016 #3
    Hair loss after ten years

    I am a metastatic endometrial cancer survivor and post on that site, but
    frequently read the breast cancer postings.

    Did you happen to get Taxotere chemotherapy for your cancer? You
    may already be aware, but if not, lawsuits are now taking place for patients
    who had breast cancer and were given Taxotere because the drug can cause
    permanent hair loss but patients were never told this.

    Don't know if you lose the hair immediately or years down the road.

    You can find some info at www.drugwatch.com.

    Takingcontrol58

  • Sasu
    Sasu Member Posts: 39
    edited September 2016 #4
    Hair loss

    It has been five years  since my cancer treatment.  I was bald for over a year, so was glad when I had hair growing back in.  Fast forward to now........my hair is very thin compared to what is normal for me.  I am fortunate in that my lovely daughter in law has a beauty salon and always keeps my hair decent.  I have given up on anything that takes more than a few minutes daily and have it very short....very very short on the sides and some fluff on the top. She taught me to toss on some earrings and go about my day.  Giving up? Not really.  Hair isn't as important to me as it is to a lot of women.  Good luck!

  • yesica
    yesica Member Posts: 1
    Hair Loss Ten Years After and Longer

    I've had this question, too. I had chemo & lost all my hair 20 yrs ago. It did grow back but I notice I lose a lot of hair on a cyclical basis. It's so thin right now I have to do a "comb over" to hide the bald spots. I had Tamoxifen so I don't know about the lasting effects of that drug. I did start using Rogaine for women and hope it works. I was 43 when I was diadnosed the first time and had a second diagnosis 1 1/2 yeras ago. I'm not doing radiation or any other therapy having gone through so much last time. I did have surgery to remove the tumor though. Any success stories on the hair business?

  • HapB
    HapB Member Posts: 527
    Macz

    Macz, I am sorry that you have to go through this indignity after all that you and your family have been through. I totally understand that when you are trying to earn a living, it is harder when you don't at least look healthy. 

    I have no idea why you are losing hair again, but I wonder whether you are on any other drugs that could possibly cause hair loss. For instance, lots of BP meds can cause hair loss. I had a friend who lost her hair while on Paxil. 

    I hope you can find the cause or wt least get the shedding under control. Hang in there! 

  • Apaugh
    Apaugh Member Posts: 850 Member
    edited August 2017 #7
    low iron

    Low iron makes your hair fall out.  Call you doc and see if they will do a blood test to see if it's low.

  • Teach76
    Teach76 Member Posts: 351 Member
    edited August 2017 #8
    Add another screening . . .

    If you are going for the iron test, ask about adding on a Thyroid test.  Thyroid conditions can also cause hair to thin.

    just another thought.

     

    Kathy

  • Mrs_J
    Mrs_J Member Posts: 1
    11 yrs and still have bald spots

    I was diagnosed with breast cancer in 2006.  I had a lumpectomy, chemotherapy and radiation.  my hair has grown back but I still have bald spots in the crown of my head and it sheds really bad.

    I have had my thyroid tested and my oncologist suggested I see a dermatologist because he said my baldness was unusual and not related to my treatments!!!!

    Glad to know I'm not the only one.

  • minimo
    minimo Member Posts: 1
    hair loss 12 yrs after chemo

    12 yr breast cancer survivor here who developed a more severe sulfite allergy after treatments. I have a very limited diet (I'm talking maybe 10 plain foods total for over the past decade), absolutely no drugs, supplements, not even otc or aspirin, no nothing. Over the past year and much more lately I have thinning hair on the top of my head, even noticing it on my pillow in the mornings, and more hair in drain than usual after washing hair. So I found your threads here about hair loss many years after treatment while I was internet searching for answers yet again. I just had my annual checkup and blood work done - all very normal, so there is no nutritional or metabolic/thyroid/anemia or drugs cause here. It seems logical that if all your hair follicles begin to grow again after chemo at about the same time, they will grow new hair at about the same time in a cycle. In my case the first regrowth took years even though initially fairly quickly, so here's hoping for no baldness! Thanks for writing everyone! Best wishes to all!

  • NeverTheSame
    NeverTheSame Member Posts: 1
    Hair loss

    I was diagnosed with Breast Cancer in 2010 at the age of 44.  

    I started losing so much hair last year (2018). It was my 8 years of celebrating being cancer free. I was blessed with a lot of  thick shiny hair. However, after chemo and radiation therapy my hair was baby fine but still thick and shiny. But not as thick as it use to be. Now my hair is thin, drabby and I has bald spots throughout it. It looks like it did after my first round of chemo was pumped in my veins. My hair texture literally changed within a few days.  

    I had some steroid injections last year and thought my hair loss may have been from the injections but now I’m second guessing this theory.

    I started using Bosley shampoo and conditioner that I purchased at the beauty supply company as well as Bosley hair and nail supplementing vitaminS.  I’m 3 months in and I’m seeing absolutely NO results. 

    Is there any hope for us. I’m really hoping people will write one this page and share some hopeful news. 

    ♥️Lynn

  • anniemshe
    anniemshe Member Posts: 91 Member
    Hair loss

    My hair has definitely changed and I call it chemo hair. I had very thick wavy hair but after my chemo, yes I lost it all but it grew back within 2/3 months but the texture was totally different thin n straight. Some people were wondering if I had it straightened! But I would say no it‘s my chemo hair. Now after 11 years I’ve been on treatment for metastatic breast cancer for almost 2 years n my hair is definitely suffering!! It’s very thin drops even more than ever!! 

    I hesitate to complain cause I know I should be grateful for every day I have but to be honest it does bother me but don’t see what I can do about it! 

  • Apaugh
    Apaugh Member Posts: 850 Member
    hair

    I am going on about 2 yrs out and my hair is not the same.  It is depressing.  

    Hugs,

    Annie

  • 2Floridiansisters
    2Floridiansisters Member Posts: 384 Member
    I hate my hair

    I was first diagnosed in 2010 at age 50, did the chemo, had surgery, went through the crappy radiation and my hair looked horrible afterwards, went on Tamoxifin and then was diagnosed again 5 years later, that time I had a double mastectomy, with crappy results from a diep procedure. Then got put on Anastrozole, my hair never recovered, it's limp, flat thin and crappy looking everyday. I decided screw it I am not taking the drugs any longer so I stopped. I was told I have a 1-2 percent chance of getting breast cancer even though I technically don't have any breast tissue. Who cares anymore, I hate my hair, I hate my marriage, that has suffered too. You can't win... 

  • Teach76
    Teach76 Member Posts: 351 Member
    I can sympathize

    I, too, can sympathize - 3 years out of treatment, and I can not make any decisions with this limp, thin hair.  I sometimes feel I was better bald - I could deal with that with accessorising.  Maybe I am just not a stylist.  I toy with the idea of getting it cut short to see if it would come in thicker, but it now grows so slowly that if I hate it, I would be stuck for a long time.

    I realize I am blessed to have my hair return, and I never thought I would seem so vain.  Maybe age is just creeping in as well, but the anti-estrogen is taking its toll on me.

    Kathy

  • asilinc298
    asilinc298 Member Posts: 8
    edited May 2019 #16
    Teach76 said:

    I can sympathize

    I, too, can sympathize - 3 years out of treatment, and I can not make any decisions with this limp, thin hair.  I sometimes feel I was better bald - I could deal with that with accessorising.  Maybe I am just not a stylist.  I toy with the idea of getting it cut short to see if it would come in thicker, but it now grows so slowly that if I hate it, I would be stuck for a long time.

    I realize I am blessed to have my hair return, and I never thought I would seem so vain.  Maybe age is just creeping in as well, but the anti-estrogen is taking its toll on me.

    Kathy

    My heart is breaking as I

    My heart is breaking as I read each of your stories.  I just finished chemo almost 2 months ago, so I have some hair growing back in, but top of my scalp looks a lot thinner than the rest of my head.  I did 12 weeks of taxol and am worried that my hair will never be the same.  It was down to my butt last summer. I am prying that all of you ladies get some real help with regrowth of your hair.  

     

  • Apaugh
    Apaugh Member Posts: 850 Member

    My heart is breaking as I

    My heart is breaking as I read each of your stories.  I just finished chemo almost 2 months ago, so I have some hair growing back in, but top of my scalp looks a lot thinner than the rest of my head.  I did 12 weeks of taxol and am worried that my hair will never be the same.  It was down to my butt last summer. I am prying that all of you ladies get some real help with regrowth of your hair.  

     

    be kind to yourself..

    Everyone is different.  My last treatment was July 2017 and it has been tough.  Some peoples hair is never the same and some, after time gets better.  I can now say, while mine is not back to 100%, it has grown out and is now the same color it once was.  Texture, well still working on that.   

    Hugs,

    Annie

  • trishellen
    trishellen Member Posts: 1
    edited December 2019 #18
    hair loss 10 years after chemo

    I had chemo for breast cancer at age 58. I had fine hair that fell out almost immediately, and grew back thinner. Now, ten years later, I have less than half of my regrown hair, and seem to be losing it steadily over the past two or three months. I am so ugly now that I have left the country, I live alone and see no one. I miss my family, but I do not want them to see me. This is no life.

  • anniemshe
    anniemshe Member Posts: 91 Member
    edited December 2019 #19
    Hair loss

    Hair loss is something many of us face but when you look at the bigger picture of the fact that you are ALIVE AND WELL, it's a small price to pay. Yes it's upsetting that our hair is not the same but I can wake up each morning and have time to spend with family and friends! I'm GRATEFUL. 
    Be adventurous try on some wigs.. any colour you like! Keeping yourself isolated is definitely no way to live!! Life is to be treasured and lived to the fullest while we still have it. 

    You are beautiful with or without hair. If you miss your family think how they too would be missing you and wanting to be with you. 

    I don't mean to be unsympathetic but your life is more than your hair or looks. We tend to be so critical of ourselves. Love yourself and love those around you. 

  • Roberta61
    Roberta61 Member Posts: 1
    edited October 2020 #20
    hair loss after 5 years

    I was diagnosed 5 years ago, at 54, had lumpectomy, chemo, radiotherapy, 2 yrs of tamoxifene, then 3 yrs of letrozole (almost finished). My hair had grown back really thick and curly, and reached down to my hips, never had it this long and thick! Until a few months ago. Then I started to loose lots of it, have already lost about a third of it, and cut it down to my shoulders to better cope with it. I guess it's because it's all the same age, so all due for turnover at the same time?  But the new regrowth is very thin and scraggly... yuk! In the meantime menopause set in, so maybe that's affecting it too?

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    edited December 2020 #21
    Well, I'm one of those women

    Well, I'm one of those women who last saw my hair 10.5 YEARS ago.  I had Taxotere and it all fell out and very little of it returned.  I do not go put of the house without wearing a wig.  Thank goodness I am retired and have come to accept it and frankly, my wigs look good.  I do NOT accept that this is ok and was totally devastated  for many years.. Now it is just what it is and I am thankful to be alive, but what is not ok is that I was not warned that this might happen.  Im sorry I have no advice for losing hair 10 years after chemo, tho.  Nor do I have any for the permanent hair loss I have experienced.  I hope that women are being warned of this now.  I would likely have chosen chemo and taken my chances, but to be so caught off guard just is not ok!