Hair loss AFTER treatment is over

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sarahsewer
sarahsewer Member Posts: 79
edited January 2015 in Life After Breast Cancer

Has anyone experienced substantial hairloss well after treatment has ended? I finished Chemo in December 2008 and my hair started growing back February '09 and now within the last 4 months I have two big bald spots. Not areas of thinning hair, but shiny bald and pink. The spots are slowly getting bigger. I am on Taoxifen and daily ibandronate, but baldness is not one of their side effects. My onc isn't concerned and my primary doc is sending me to a dermatologist, but I am wondering if anyone else has had this happen. Thanks.

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  • shadow2356
    shadow2356 Member Posts: 393
    edited July 2010

    I don't know about head hair loss because I used the cold caps. However, I lost my eyebrows and eye lashes about 8 weeks after I finished chemo. I think there are times things can be delayed. I was also told the damage to your follicles can last about 6 months.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited July 2010

    Sarah -  You might have developed an autoimmune condition known as alopecia areata.  Some researchers think it can be brought on by hormonal changes (for example, my neice developed it when pregnant) and other folks think it can be caused by stress.  Your dermatologist should be able to diagnose it accurately.  BTW, it is not necessarily permanent -- with many people, it comes and goes.  I have a couple of close friends who have it.

    Speaking of hair loss -- my leg and underarm hair never returned after chemo; eyebrows and lashes are pretty skimpy and, thanks to Femara, the hair on my head is much thinner than before all this horror started.  Those follicles sure got confused!

    Linda

  • otter
    otter Member Posts: 6,099
    edited July 2010

    Linda, same here, as I posted on the Hair Hair Hair thread just today.  My scalp hair is thinner, my brows are patchy, and my lashes are short.  Even the hair on my arms, legs, and "elsewhere", isn't back to what it was pre-chemo.  But, is that because of the chemo (Taxotere & Cytoxan), or is it because I've been on Arimidex for the past 2 years?  My scalp hair grew back just fine and was thick and curly 8 months post-chemo.  Then, it gradually started to thin.

    The topic of "thinning hair" surfaces every once in awhile on the Hormonal Therapy forum.  I think it's an under-appreciated SE of the aromatase inhibitors.  We appreciate it, of course; but our oncos seem to overlook it.  Mine told me thinning hair was a known SE of Arimidex, but it hadn't been studied in clinical trials because it was difficult to measure objectively.  <sigh>

    As for stress-driven or hormone-driven hair loss ... my hairdresser told me she lost a lot of hair during her pregnancy; and she had a friend who darn near went bald with each of hers!  So, there are lots of possible causes of overall thinning, or outright bald patches like Sarah is describing.

    You're right -- Sarah's dermatologist should be able to figure it out.  I hope so, anyway.  And I hope Sarah posts the answers after she meets with him/her.

    otter

  • corssy
    corssy Member Posts: 10
    edited July 2010

    Hi Sarah, 

    I see you are from WI, so am I.  I live in Appleton.  I work at a beauty salon, and today my boss told me that after I loose my hair, I should use Nioxin or Surface Awaken, shampoo, conditioner and the treatment.  I was going to post this tonight anyway.  It has helped many people with hair loss and not even ones that had to go thru chemo.  It really does work.  We have a lady who comes in and looses big chunks of hair when stressed out by anything and it grows back thick and nice after usage of either of these products.  I hope I was of some help. I start chemo tomorrow and the first one will be 5 - 6 hrs.  I am so looking forward to that.  (ha,ha).

    Nancy

  • msmpatty
    msmpatty Member Posts: 818
    edited July 2010

    Nancy, good luck with the start of chemo tomorrow.  

    I think there is something going on with the AIs regarding hair loss and extremely slow growth.   I finished chemo the end of January and started Femara in early April.   My head hair came in really thick and is still fine, but since starting Femara I've noticed I only have to shave my legs once and week and my arm pits even less frequently.   I'm not complaining exactly...but I hope the same slow growth doesn't happen on my head!

    Patty

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited July 2010

    If nothing else, this website illustrates how very VARIED everyone's experiences are!  Wow!  My last tx was July 21, 2008 and even by Christmas, my hair length couldn't even be considered any kind of a trendy short style!  It wasn't until the following February that I went to the salon for a trim.  BUT -- it did come in wavy and the wave is still here, so I'm crossing fingers that the waviness is permanent.

    As for the AI, I started taking it a month after the final tx, so I'm kind of blaming Femara for the thin-ness on the crown and the extremely fine texture  But, who knows?

    Now, as for the eyelashes -- I went to our local pharmacy to purchase some really good mascara (and by "good" I mean something that would actually give my eyelashes some definition!). The cosmetician told me about a product that she has been using called "Ecrinal". I've been applying it nightly (it's a gel that you apply using a mascara wand) and I can't believe it but it actually works!!!!  I now have eyelashes that you can see, and when I apply mascara you can see them even better.   Not saying it will work for everyone, but it's working for me.   BTW the container lasts a couple of months and it's CD$20.  Since I don't have to buy razor blades or special hair removal creams.........Wink

  • 2z54
    2z54 Member Posts: 261
    edited July 2010

    I just searched "bald spots" on this board and found this post. I finished chemo Dec. 2008 and my hair has come back, BUT... my hairdresser and I were just talking about how the original fine/thin texture of the post-chemo hair has never changed, and we thought it would go back to being thick and somewhat coarse.  And, I have two areas of bald spots that I never had, or maybe my hair was so thick I never knew I had them. But, one spot on the top/back of my head is so bald I bought a straw hat to wear on the beach.

    I'm not on Femera, Tamoxifin, Arimidex, etc.  no AIs.  I think this is just the residual from chemo.  I think I'll go buy some Nioxin and see if that helps.

    Sue

  • sarahsewer
    sarahsewer Member Posts: 79
    edited July 2010

    Thanks all for the input. My spouse says he sees hair growing back but my daughter laughs and says the spots are shiny bald (the darling she is). I'll print off your responses and take them to the dermatologist. I'll bet they love that.

    I have also read that some think stress can cause the alopecia, but sheesh, I'm finally feeling well.

  • iodine
    iodine Member Posts: 4,289
    edited July 2010

    I had a lot of hair loss after the birth of my son and I was eating next to nothing with any calories in it.  I relate it to the poor nutrition more then hormone changes, but both together were my failing.  My husband had also been transferred to Korea when our son was about 6 weeks old and I had a 3 year old, too.  Whew.  

  • gracejon
    gracejon Member Posts: 972
    edited July 2010

    My skin cancer derm doctor told me to take Biotin Forte.  It really worked for me but also think time had a lot to do with it.  I clearly now have better hair than what I started for no reason that I know. I  had thin hair but no bald spots after chemo.

  • momgovero
    momgovero Member Posts: 28
    edited August 2010

    I did the same thing, searched for bald spots.  I finished my Herceptin March 2010.  My hair has grown back, although it is still thin.  But after my reconstruction surgery, I noticed a small round bald spot on the back of my head.  I thought it was from them shaving my head for some reason during the surgery!  But it has not grown back, and it has been 9 weeks.  It was about the size of a quarter, and now it is slightly bigger.  I am starting to get nervous!  After all I have been through, with chemo, loosing all my hair, having to wear wigs, now this??  I am not on anything now.  With Herceptin, it was for a year.  I am done with my year, and am not on any drugs today.  I am taking mega doses of Vitamin D, because of the recent connection of Breast Cancer linked to low levels of Vitamin D.  So, I guess I will look for this shampoo, and maybe call a dermatologist.

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