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Tamoxifen and Hair loss?

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24

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  • lisey
    lisey Member Posts: 300
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    Update: Well I'm out of the spray - I could get more but it makes my hair so oiley I then have to shower.. so I've been just doing the shampoo twice a week. My scalp is still itchy and my hair feels so much thinner. I don't see clumps at all, just an overall thinness, and my curl is completely gone. If Tamoxifen is doing this to my hormones, then in a way it means it's really working fighting the ER+, but at the same time, my confidence has sunk quite a bit. I still have a full head of hair - but I can't even keep a bearclaw clip in it anymore - it just slides off. All the texture is gone. I'm only 42 so pretty bummed. I can live with it this thin, but not any thinner... They say 40% of women experience hair loss during Menopause... I didn't think I was in Menopause - I have regular normal periods.. but Tamoxifen could still be throwing my hormones into it, periods be damned. An AI wouldn't be any better - since I'd need my ovaries out.. so I'm screwed.

  • solfeo
    solfeo Member Posts: 253
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    I had already started losing my hair before the cancer, and tamoxifen only made it much worse. I didn't want to use Rogaine because I'm trying to avoid chemicals but I wasn't ready to let my hair go permanently even at the ripe old age of 51 LOL

    The minoxidil (generic name for Rogaine) worked and I have more hair now than before tamoxifen. I'll share some tricks I learned.

    CVS has a generic brand that has far fewer additional chemicals than other brands: alcohol, propylene glycol, purified water, and that's it. I could do with out the PG but it helps with absorption. The low chemical one comes with a dropper. The foams all have lots of chemicals.

    You want to use 5% minoxidil, which in most brands (including the above) means the product made for men, and it will work if you use it just once per day. The standard for women used to be 2% twice per day. I use the 5% once in the evening and wash it out in the morning. I learned this trick from a dermatologist on Dr. Oz. Just do it early enough for it to dry so you don't mess up your sheets.

    Then once my hair grew back I got more lazy about applying it every day. I use it most of the time, but if I know I can't wash my hair in the morning I skip it. That happens once or twice a week and it hasn't caused the hair to fall back out. You will lose the new growth if you stop using it for any length of time, but I have occasionally skipped for several days in a row with no obvious effects.

    Hope some of this helps!
  • lisey
    lisey Member Posts: 300
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    Solfeo,

    Thank you for your advice. I need someone to help me understand how women apply this.

    I'm totally game for trying Rogaine again (mine is 5% for women as a foam)...

    1) it says to apply directly on the skin, but if you have hair thinning and no bald spot how exactly do you apply it? Do you just rub into your hair like you would shampoo?

    2) With my dry scalp and red hair I have very little oils, so I usually only wash it once a week. I wonder if that would work with rogaine? I hate water - I'm like a cat and try to avoid it where possible. The idea of taking daily showers absolutely kills me... especially since it takes 30 minutes to blow dry it straight (and I can't wear it naturally curly anymore because it's changed textures and I look like a drowned rat with half curls.).

    3) I think i'd need more than a half cap full to rub into my entire scalp - since most will get caught in my hair. I'm willing to use more and just buy it more often if it can work.



  • hydrogirl
    hydrogirl Member Posts: 6
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    I am sorry to hear about your hair loss. I am concerned about this, Recently diagnosed and am headed for potentially chemo and for sure radiation. My best friend/soul mate passed in June after 6 plus years battling ovarian cancer. About a month/6 weeks later I suddenly noticed clumps of hair coming out in the shower. I went to my doctor for thyroid check and other things all clear. Did some reasearch and found out it was telogen effluvium due to stress. I have long hair and it went from a three turn holder to a 5 to be tight. It looks awful. Luckily I can see all the short hairs growing back so I figured a shorter cut until it catches up. I am not happy to hear this side effect, I am concerned about all of the side effects, have not read much good about it. But I also figure women who do well probably aren't taking the time to post reviews of it. I will take all of this advice if I encounter these problems. Thanks all for contributing. I wish you the best.

  • TWills
    TWills Member Posts: 509
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    Lisey-Try flipping your head/hair upside down, that's how I've always applied products to my scalp or roots of my hair. It gets the hair out of the way:)

  • solfeo
    solfeo Member Posts: 253
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    I have widespread thinning but the worst spot is in the middle right behind my hairline. That's the only spot the hair didn't make a full comeback. I just part it down the middle and apply it along the part. It drips down my scalp in different directions a bit, and then I rub it in and back and forth to disperse it as widely as possible. More of it probably stays in my hair than on my scalp but it's enough, and the hair on the crown seems to have grown back everywhere, not just where the minoxidil would have been most concentrated. I did try the foam at one time. It was less messy but harder to spread it around, and of course I want to avoid the chemicals in the foam.

    The reason I like to wash it frequently is because it builds up a little film on your hair, but mine is fine and thin and yours might tolerate it better. It doesn't look too bad if I don't wash it one day after application, but I could never go more than one day. That is probably true even if I don't put anything in it though! I think it also might irritate some people's skin but it doesn't bother mine. If it did bother your scalp, then changing to the lower chemical generic brand could help. I think the irritants are in the additives.

    They say using more isn't more effective, and if you did, more of it would be absorbed into your skin and there could be side effects. Heart-related stuff, but that's probably one of those theoretical precautions that hasn't really been tested much. If your heart starts beating really fast you would know. Also if you use too much I think there is a possibility you can start growing hair on your face. That is why they used to only recommend the 2% solution to women. I haven't experienced any unwanted hair growth with the 5% once per day schedule.
  • lisey
    lisey Member Posts: 300
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    Thanks TWills, I'll try applying it upside down tonight. I used probably a handful of mousse last night and worked it into my scalp everywhere. It's actually made my hair feel more textured like before all this, so perhaps the accumulation won't be bad for me. I'll probably wash it every third day and see if I can find a workable routine.

    Solfeo, so you are using the drops then? I looked into those just thought everyone was using the foam now. It doesn't irritate my skin, so I'll keep trying to do this daily and see what happens.

    The hard part is having patience for months. Since I won't know it's working for at least 4 months.. ugh.

  • solfeo
    solfeo Member Posts: 253
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    I had new hair growing the first month that was noticeable by my hair stylist. Lots of little spiky hairs
  • amygb
    amygb Member Posts: 1
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    I am experiencing the same side effects. Began tamoxifen 4 months ago and have lost 50% of my hair and my scalp is itchy. I am going to the dermatologist tomorrow to see if there is anything I can do to help it. At this point, I am afraid to wash my hair because of the massive amounts falling out. Will let you know if the dermatologist has any suggestions.

  • lisey
    lisey Member Posts: 300
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    For me, the itching has now subsided nearly 100%. That prescription shampoo really helped, along with the prescription spray. I think I have the combination of dermatisis brought on by an allergic reaction to the damn oil the massage therapist used on my scalp, with noticing how much thinner my hair has gotten due to Tamoxifen - and texture changes that accompany the thinning. Now that the itching is gone, I feel better all around, still working with Rogaine to thicken it up... will report back in any changes. :)

  • pfetnie
    pfetnie Member Posts: 1
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    Glad to know I am not the only one, Dr kept telling me that they weren't side effects and offered more meds. After all the chemo and stuff I didn't want more meds, just felt with it. I actually just stopped taking tamoxifen this April. I was on the five year plan. As the end near the doc started hinting at another five years. That it is better. But I insisted on stopping it, besides, most of what I have read said the 5yrs vs 10 years had the same results. So for me the sooner the better. Tamoxifen gave me strong hot flashes, messed with my weight, irritable snappiness, and yes itchy scalp and thin hair. Oh and an itchy (anus). So, to deal I took it before bed, that way I would sleep through the irritableness and not snap at anyone. So, my hair was normally thin, but I had a good amount. Tamoxifen made it thinner and I have so much less, bought clip in extensions to fill it out. I stopped the med in mid April, it is November still have itching, but mostly in the morning from laying in bed or when I mess with my hair too much, or sweat. They say our hair is a record of our life since whatever we take in leaves a sign in our hair as it grows. Not sure how long it will take this med to filter out of my system after five years. I am hoping after a year I will see things returning to normal. Then I might cut it all way down and get rid of the hair that has any remnants of tamoxifen in it.

  • moderators
    moderators Posts: 7,966
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    pfetnie, thanks for sharing your experience with us here. And we too hope that you experience a return of think hair.

  • glamgourmet604
    glamgourmet604 Member Posts: 1
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    I am in a similar boat! I've been 1 year cancer free as of today. I've been on tamoxifen since February. I do not have the itchiness part. But my hair has been considerably thinner than it use to :(. My oncologist had no real answer for me. He said that hair can come back different, curly, color change. But he didn't specifically say thinner. I really want my hair back too :( I have been using Nioxin for 3-4 months now. I don't know that its actually doing anything. And im taking 5000 mg biotin as well. Please let me know if you find out anything! I would love to stop taking tamoxifen.... but i think keeping the cancer away is more important than thick hair.


    Oh ps.. my hair actually was growing back well after nioxin and biotin until i went to mexico and it started to get thin again.. not sure whats going on.


  • lisey
    lisey Member Posts: 300
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    Merry Christmas everyone! I am STILL dealing with some itching and thinning. ugh. Some days I think it's doing better, others it's itching and looking so thin. I've requested new labs since I've been taking 2 iron pills a day. I just found this study that recommends a prescription of topical 5-alpha reductase inhibitors and vitamin C. I wanted to share.


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4864803/

    Abstract

    Endocrine therapy-induced hair loss (ETIHL) associated with aromatase inhibitors and tamoxifen treatment is currently mostly reported but remained an unresolved therapeutic issue in patients with breast cancer (BC) since the number of studies regarding the management is limited in literature. Herein we investigated the possible causes of this clinical problem and its relation with endocrine therapies widely used for BC survivors and made some modest practical recommendations in light of the literature review in order to provide an optimal management. On the basis of literature findings, common causes of hair loss apart from endocrine therapies should be investigated with an initial evaluation workup and then should be corrected, if observed. Treatment with topical 5-alpha reductase inhibitors and supplementation of Vitamin C and omega-3 fatty acids are likely appeared to be the most appropriate treatment agents for ETIHL without causing an adverse effect on BC prognosis. However, more prospective, randomised, placebo-controlled studied are required in order to confirm our results and also identify the clinical effects of this problem on patients with BC.

    Keywords: Endocrine therapy, Breast cancer, Hair loss, Management


    Background

    Tamoxifen and Aromatase Inhibitors (AIs) currently hold an important place as endocrine therapy (ET) in adjuvant and/or metastatic setting of the patients with Hormone Receptor (i.e. Estrogen Receptor+ and/or Progesterone Receptor+) positive invasive or non-invasive breast cancer (BC) (Early Breast Cancer Trialists' Collaborative Group (EBCTCG) Howell et al. . However, a substantial portion of the patients using tamoxifen therapy for many years are reported to suffer from the hair loss (HL) or hair thinning (Gallicchio et al. . A retrospective questioning of the patients with BC regarding this therapeutic issue has revealed that approximately 25 % of the patients receiving ET experience HL or thinning (Gallicchio et al.). So that, this rate is almost similar to those reported for flushing and arthralgia related to endocrine therapy which are well-known to impair the quality of life and more considered by physicians for specific additional medications (Niravath Laroche et al. ). Prolonged exposure to androgenic effects that is increased with aging in men leads to frontoparietal baldness defined as "male pattern baldness", however, HL in women arises on the midscalp and/or globalscalp due to the diminished estrogen levels in advanced ages (Olsen . Hair texture of the scalp consists a plenty of estrogen and androgen receptors, particularly frontal and parietal area (Wood and Price . An assessment of androgenetic alopecia with a comparison of 12 women (aged 14–33 years) and 12 men (aged 18–30 years) showed that frontal scalp had more androgen and 5-alpha reductase receptor in comparison to occipital scalp in both sexes. However, relative values were found to be much more greater in men compared to women (Sawaya and Price . This explains the difference patterns of HL in men and women in normal circumstances. AIs widely used in BC treatment (letrozole, anastrozole, exemestan) and tamoxifen known as selective estrogen receptor modulator are known to cause HL (male pattern baldness) or hair thinning in women (Gallicchio et al. . Rebound increased levels of androgen alongside the diminished levels of estrogen due to AIs are supposed to decelerate and inhibit the proliferation of the hair follicles in the skin (Rossi et al.. Reduced estrogenic effects due to tamoxifen enables the hair folliclesis go into the resting phase (Gateley and Bundred . These mechanisms mentioned above may be the main reasons of HL caused by ET. Besides, one another possible mechanism may be explained with the theory of that tamoxifen or AIs lead to HL directly on growth receptors or through immunological mechanisms, however, a study with respect to this issue has not yet been performed.

    Although it is known that chemotherapy-induced HL during adjuvant chemotherapy is a temporary clinical issue, it constitutes a great concern and cosmetic problem in patients with BC. Many patients therefore tries to overcome this period by covering their heads with a wig, however, this situation may psychologically leads to treatment rejection or discontinuation. By contrast, although patients with advanced disease treated with chemotherapy also faced with similar HL problems, cosmetic care in such patients generally remains in the background as they are primarily aware of the importance of the metastatic process along with the treatment response (Lemieux et al.). Thus, because the endocrine therapy-induced hair loss (ETIHL) negatively effects the sociocultural status and quality of life, it is a major problem and remains a therapeutic challenge in patients with BC, hence should be managed by effective treatment options which are capable to stop the HL rather than additional psychological or prosthetic options.


    Current recommendations for chemotherapy induced hair loss

    Minoxidil is a vasodilator drug, it is considered a drug to promote hair growth (Olsen et al. So far, numerous of agents and methods such as cold application to scalp or local minoxidil therapy have been used during chemotherapy period for the management of HL that negatively effects the quality of life among BC survivors. While minoxidil has been shown to provide a faster hair growth rather than preventing the HL in clinical trails (Wang et al. despite a positive treatment effect, cold application to the scalp has not been considered to be effective and useful in this direction since it causes lots of complications such as infection and thrombosis (Trüeb . Although AIs or tamoxifen-induced HL is a common clinical entity and problem for both oncologists and their patients and also frequently asked and encountered clinical issue which leads patients to seek for a remedy at websites (Tamoxifen and March , it is surprising and distressing that no randomized controlled studies with respect to this issue have yet been designed. Theoretically, the direct implementation of the estrogenic effective creams on the scalp tissue may decrease the ETIHL. However, when considering the AI therapy to be used for a total of 5 years, whether the systemic transition risk of the estrogenic therapy plays a negative effect on disease recurrence in patients with BC is still an enigma and also requires to be clarified in light of the randomized, placebo-controlled trials to demonstrate the efficacy and safety of this treatment. Herein, we have evaluated the possible role of most recently suggested nutritional supplements and 5-a reductase inhibitors with considering the possible hormonal mechanisms in the prevention of ETIHL.


    Possible treatment options for ETIHL

    For the purpose of preventing the ETIHL, reducing the rebound androgenic effects by maintaining the anti-estrogenic effect may theoretically act as a potential beneficial method for the hair follicle. To do so, combining the endocrine therapies (such as LHRH agonists) with mitotane and ketoconazole which are used to disrupt the ovarian or adrenal androgenic hormones synthesis may provide this effect (Santen and Samojlik . However, some suppression therapies of adrenal glands functions, particularly ketoconazole, have various side-effects such as adrenal insufficiency and hepatic enzyme suppression (Boetsch et al.

    In healthy adults, estrogen is known to play a key role in the hair development in tissue levels and also increase the amino acids and trace elements (such as selenium, cysteine) in hair texture (Zhou et al.). For this reason, trace elements and/or vitamin supplements may prevent the ETIHL. Moreover, one another important example to demonstrate the beneficial role of vitamins on hair health is that vitamin B6 is known to decrease the efficacy of the estrogen in hair texture or other tissues (Finner Hertz). Today, even though the opinion of that B6 supplements (topical or systemic) may be used to treat the baldness, this can theoretically reduce the estrogenic effects on the scalp, hence may not be effective in the management of ETIHL.

    Vitamin C potentiates the estrogenic effects in vascular levels and also reduces the effectiveness of testosterone (Hwang et al. . Alongside the increased estrogenic activity, vitamin C also has a protective role against the BC (Kim et al.), coronary artery disease (Hwang et al. and osteoporosis (Sahni et al). Thus, vitamin C may loco regionally reduces the HL by increased estrogenic effects along with decreased androgenic effects on the scalp, when locally applied with an oil-based buffer that enables vitamin C to pass across the hair texture.

    While the low levels of vitamin D are suggested to have an adverse effect on the survival of patients with BC, supplementation of vitamin D deficiency is known to improve the survival (Mohr et al. . Besides, low levels of vitamin D in serum and/or lack of Vitamin D receptor have been found to be associated with HL (Rasheed et al.; Amor et al. However, it is still uncertain whether vitamin D supplementation increases the proliferation of hair follicles (Amor et al. Rosen et al.).

    Vitamin E has been shown to decrease the effectiveness of estrogen in the breast tissue and low levels of vitamin E are also reported to be associated with increased levels of estrogen (Chamras et al. However, according to the results of the SELECT study in which an increased rate of prostate cancer was reported, Vitamin E carried a potential androgenic and anti-estrogenic activity in patients receiving Vitamin E supplementation (Dunn et al.

    Folic acid is also reported to have a positive effect on hair health (Rushton however, unfortunately, there are some epidemiological studies that suggest folate may increase the tissue levels of estrogen, indicating that high levels of folic acid might lead to BC (Kim ).

    Oral supplementation of omega-3 and -6 fatty acids is also known to positively affect (Pardini the prognosis of BC (Bartsch et al. and many other cancers and also increase the apoptosis of BC cells (Sun et al. in tissue cultures. Additionally, it has been recently shown that 6 months after the use of these fatty acids were found to protect and improve the hair health through antioxidant effects on the scalp tissue (Floc'h et al.

    Apart from nutritional supplements, another important point for the potential treatment of ETIHL is hormonal manipulation, undoubtedly. Because AIs block the formation of estrogen from androgens, more testosterone synthesis may occur from the androgens accumulated behind, hence might increase the 5-alpha reductase enzyme activity in tissue levels, leading to much more dihydrotestosterone formation that is known to be the most potent androgenic structure in human body. Therefore, specific and systemic treatment with anti-5-alpha reductase agents (such as finasteride or dutasteride) may preclude both HL on the scalp and male pattern hair growth in other parts of the body. Genuinely, the fact that patients with deficiency of congenital 5-alpha reductase enzyme activity rarely present (Herskovitz and Tosti with male pattern HL or that patients using a 5-alpha reductase enzyme inhibitors have an significant improvement (Olsen et al. in HL is the objective evidence of this situation. By contrast, given the systemic side effects of these agents, topical 5-alpha reductase enzyme inhibitors may be locally (particularly frontal-temporal regions) or entirely applied on the scalp skin.


    Rationality for safety and availability

    When taking into account the aforementioned potential positive effects and risks of the treatment strategies, vitamin C and folic acid, providing only local use, are more likely to be the most potential and effective treatment agents due to the fact that they have a short half-life duration and that vitamin C is stored in the body for a long time, leading to increased levels in the systemic circulation and preventing the breast cancer recurrence. Moreover, vitamin C may have a protective role from AI-induced osteoporosis, providing a more potentiate effect to the current osteoporosis treatments. Because to positive direction of hair follicle proliferation stimulating effect of the vitamin D receptor is ligand independent, Vitamin D supplementation should not be much of a contribution on ETIHL. Besides, omega-3 fatty acids are another potential treatment agents in the prevention of ETIHL because of having positive effects on both breast tissue and hair health. Based upon these findings, when considering the underlying mechanism, we emphasize that 5-alpha reductase enzyme inhibitors (local cream or shampoo forms) could possibly be the most appropriate and potent treatment options in the treatment of ETIHL. It is also clear that systemic suppression methods of androgen synthesis may not be appropriate options due to systemic potential side effects (for instance; adrenal insufficiency)which can not be worth to take risk for cosmetic purposes and may also lead to potential comorbidities or mortalities. Despite having no adverse effect on BC prognosis, vitamin E does not appear to be beneficial since they might provoke the male pattern HL by its possible androgenic effects.


    Summary

    Endocrine therapy-induced HL have remained an important but less cared cosmetic problem in patients with breast cancer. When considering that one forth of the patients with breast cancer using endocrine therapy encounter with this clinical problem; rather than suggesting patients anti-HL methods, it would be more beneficial and effective to suggest them (before they start the complaining of HL problem) to be aware of that HL could be resolved. Today, there is no evidence based therapy with regard to this issue. In addition to those suggestions, before planning an initial endocrine therapy, several factors which may lead to HL including zinc and trace element deficiencies, other endocrine disorders and fungal or bacterial infections on the scalp should be primarily evaluated in patients suffering ETIHL.

    In conclusion, we would like to emphasise that topical 5-alpha reductase inhibitors and supplementation of vitamin C and omega 3 fatty acids in a non-toxic dose without leading to any adverse effect on the prognosis of the patients with breast cancer appear to be the most appropriate options in the management. However, more prospective, placebo-controlled studies are currently required to prove the efficacy of these treatment methods in endocrine therapy induced hair loss.

  • Jsut9802
    Jsut9802 Member Posts: 1
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    at about week 4 on tamoxifen, I noticed my eye lashes were barely there (they had fully recovered from chemo). Not sure if it’s just a growth cycle or a SE of T. Ugh!!!!

  • gb2115
    gb2115 Member Posts: 553
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    I had posted here awhile back that I had been losing hair. I'm still on tamoxifen (10 months in), and it just occurred to me that the hair loss has really slowed. I think it's back to normal, with no other changes. Can't account for it, whether it was the tamoxifen or not. Hmm.

  • lisey
    lisey Member Posts: 300
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    GB, Hairloss occurs about 6 months after surgeries as well, so it could be that for you. I'm too far out for it be the surgery, and with the itchy scalp, I think it's Tamoxifen and a reaction from it. We'll see if my ONC will prescribe the topical for me. In the meantime, I'm doubling up on Vitamin C as well.

  • kcat2013
    kcat2013 Member Posts: 53
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    Lisey, I'm glad to see this thread. I've been on Tamoxifen for about 3 years and started noticing about 6 months ago that I was losing more hair than normal. Freaks me out after having lost all my hair once through chemo when now I run my hands through my hair and it comes out in little clumps! I've had my thyroid checked and it's fine, but I don't know about my ferritin levels (although the overall iron level is normal). My hair is naturally straight and not very thick so I'm a bit dismayed to see how much thinner it's become in the last year.

  • lisey
    lisey Member Posts: 300
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    Hi KCat,

    My iron levels were fine as well - BUT apparently that just means I had iron in my body that wasn't being used. The Ferritin level actually show if the iron is being used and mine were super low, - thus the 2 iron pills of 325mg a day (with orange juice). I'm going to get more medicated shampoo from the dermatologist - and the nurse ordered new labs to check ferritin levels since it's been 3 months. The only thing left to try is to get that new prescription for the topical 5-alpha reductase inhibitors... My onc will be back in the office next week apparently.


  • gb2115
    gb2115 Member Posts: 553
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    Lisey---that totally makes sense, I would have been about 7 months out when I noticed it. I was also a few months out from radiation, which I believe affects the body more systemically than they let on. I also had some weird nail issues that started around that time too that are mostly resolved. I was worried I had something fungal starting on my toenails but that would persist, not grow out and go away. I think our bodies just don't like the shock of surgery. It makes sense.

  • pupmom
    pupmom Member Posts: 1,032
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    I did not have chemo, and haven't experienced any hair loss, other than what I had before dx probably due to aging, from Tamoxifen or Aromasin. I think this issue for those who had chemo and hormonal treatment needs to be sorted out.

    In terms of dealing with hair loss, which I first started noticing in my late 30s, I now use Rogaine, which has worked wonders.

  • lisey
    lisey Member Posts: 300
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    Here's my issue with Rogaine.. (I have the foam). I don't have any specific bald spots - just overall thinning. So how do you apply it? If I try to put it on my scalp it hardly gets on it and stays throughout my hair and turns it oily. I tried flipping my head upside down but it still just got throughout my hair not scalp. I'd love to use Rogaine if I can actually get near my scalp and not just my hair.

  • Artista964
    Artista964 Member Posts: 376
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    i had female pattern hairloss before dx. Mom has issue and dad so mine has a heredity component. Tried it for a year and lost more hair, but my facial hair flourished. Even generic foam is expensive as you need to apply twice a day for best results of you get any. If you stop whatever you may have gained is gone.

  • Lezafeene
    Lezafeene Member Posts: 1
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    hi lisey

    Thanks so much for posting. I am dealing with almost the exact same symptoms. I've been on tamoxifen for 4 1/2 years now. I started noticing hair loss about 9 months ago. I thought it was just shedding or due to stress so I didn’t think much of it at first. It has gotten progressively worse and now I have a bald spot right below the crown of my head. Also right at my hairline. I had TONS of hair like you said you did. It came back in full force and was back to normal texture within a year after chemo. Now it has changed texture and is limp and thin. I don't have much itching but do have tenderness on my scalp. I went to onco. She tested levels. All are fine. She recommended rogaine. I started using the foam. It seemed to have slowed the loss a little. Haven't noticed any new growth yet. It had only been 3 weeks. I also went to dermatologist last week to discuss hair loss. She is currently looking at labs to see if she sees a deficiency in any levels. If not she wants to do a scalp biopsy. She says this will determine if it is the tamoxifen. She wanted me to stop the rogsine though until the biopsy and now my hair is falling out again. Ugh. I’m seriously so discouraged by this. I still have 5 1/2 more years on tamoxifen ! I’ve recently been looking at hair growth shampoos like keranique and monat. Wondering if anyone has tried these and had succes? They are expensive so I hate to try them if it’s just a scam. I’m tryimg to keep things in perspective ... ie would I rather have cancer again or deal with thin hair? But it’s still scary when I brush my hair each day and see the amount coming out ! Again thanksfor starting this thread!

  • lisey
    lisey Member Posts: 300
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    Hi Lezafeene, it's so good to know I'm not alone. I put Rogaine on today and the itching subsided. I'm going back to my Derm as well in Jan, I'll ask about the biopsy test. Please keep me posting on what you find out.

  • lisey
    lisey Member Posts: 300
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    Well, I just got my iron/Ferritin levels rechecked. In August I was at 18 for Ferritin, After 4 months of taking double dose iron, I'm only at 34! ugh... Ideal is around 70... So I'm going to have keep at it. But at least it's rising. Total binding capacity went from 51% to 45% (anything over 50% is bad news) I figure I've lost about 50% of my hair thickness. It looks much better straight than curly now, so I straighten it every few days. As long as it's not itching I do ok. The Rogaine is actually helping control the itching. I'm putting a full palmful in the scalp area every morning. It acts like bad hairy spray from the 80s, but is better than greasy. :)

  • BarredOwl
    BarredOwl Member Posts: 261
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    Hi Lisey:

    I noticed earlier in the thread you mentioned: " 1) I've been taking 10,000 mcg Biotin. . . "

    I don't know if you are still taking the biotin, but a recent feature suggests that biotin supplements may interfere with some types of assays, because certain direct and indirect assays rely upon biotin binding (e.g., streptavidin-biotin binding). If you are still taking biotin, please ask your doctor whether any of the tests you received (e.g., ferritin) rely upon such technology, and if so, ask about the possible implications of that for your test results.

    MedPageToday (2017): "Biotin Supplements May Interfere with Blood Tests "

    https://www.medpagetoday.com/endocrinology/generalendocrinology/68137

    Li (2017): "Association of Biotin Ingestion With Performance of Hormone and Nonhormone Assays in Healthy Adults"

    https://jamanetwork.com/journals/jama/article-abstract/2654822?resultClick=1&redirect=true

    Where applicable, whether the results may be skewed either upwards or downwards by the presence of biotin in a patient sample will depend on the nature of the assay, as explained in more detail in this feature (e.g., sandwich assay versus direct competitive assay with biotinylated analyte):

    Barbesino (2016): "The Unintended Consequences of Biotin Supplementation: Spurious Immunoassay Results Lead to Misdiagnoses"

    https://www.aacc.org/publications/cln/articles/2016/december/bench-matters-december-2016

    BarredOwl


  • lisey
    lisey Member Posts: 300
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    HI Barred, Yes, I'm taking it daily. I will definitely ask if that has any issues with the ferratin test and return and report when I find out.

  • Lula73
    Lula73 Member Posts: 705
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    so far the 5,000 mcg biotin is working for me. The brand im using is Nature Made Hair, Skin & Nails. It also has Vit A,C, zinc & copper in it. One of the nurses at the breast center also recommended a product called It Works if the biotin didn’t make s difference. Might be worth a try!

  • shreyapandey
    shreyapandey Member Posts: 4
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    Make sure you are eating sufficient protein—keratin, which is what hair is made of, is a protein and depends on adequate dietary protein intake. Hair follicle cells have cycles—growth, resting, loss (telogen). Usually, they're staggered so that nothing changed. But anything that messes with the cycles—especially hormonal upsets (menopause, aging, pregnancy, or estrogen suppression) can cause a greater proportion of the cells to go into telogen status that loss increases (telogenic effluvium). But in a few months you might notice a growth spurt. Tamoxifen doesn't usually do this because it doesn't alter the nature of or reduce the amount of estrogen in your body—rather, it blocks tumor cells' estrogen-receptors' access to it. Are you anywhere near peri-menopausal age? Hair naturally thins as your estrogen production decreases, and it decreases the closer you get to menopause.

    I experienced the same thinning of my initally really thick hair a few months into using tamoxifen. After hair transplant, I regained my hair hair as well as texture. Currently I don't take any tables for it. I shampoo thrice a week containing Ketoconazole, it is well known to inhibit 5AR.

    Meanwhile, be gentle with your hair—don't do anything that could pull it out like tight ponytails or pulling while heat-styling or winding on rollers. If you get salon treatments or color, tell your stylist you are concerned about thinning.