Tamoxifen and Hair loss?
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Solidarity Etnasgrl...!!! I'll return and report on the iRestore. Freaking $550, but if it works... it'll be worth it. and there's a 180 day guarantee on the price if it doesn't work.
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Can't wait to hear your report! Good luck!
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Do you want curly hair? or do you want shorter, drier, more fragile hair with its natural curl patterns altered?
I have much to say/type. It is going to take a while.
Meanwhile, please read this, including the linked content relating to "bubble hair." Not everything in my post there is right for your (curly) hair type, but much of it is right for your hair type.
https://community.breastcancer.org/forum/80/topics/853666?page=1#post_4932255
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I am so sorry, Lisey. I understand your frustration about hair thinning. Most of mine fell out two summers ago. My still-remaining hairs have since grown nearly a foot longer, and my regrowth hairs have grown out a bit less than that.
>>it takes 30 minutes to blow dry it straight (and I can't wear it naturally curly anymore because it's changed textures<<
You "had to" use a curling iron because your hair was not curly enough? Then you make a routine of straightening it because it is too curly?
I cannot help you about the hair thinning. I hope it will be resolved very soon. I can suggest some hair care practices that should be very conducive to your hair's natural curliness. I think that is (part of) what you want – besides the thickness/volume you enjoyed, you wish for your hair to be as curly as it was before.
Some of these things you are doing to your hair are surely drying and damaging to it. The practices involving heat can permanently alter your hair's curling patterns – how it naturally wants to clump and curl in groups of strands curling together. From your pictures in this thread, I see the difference in the definition of your curls – the groups of hairs doing their own curling things together.
I understand the Nioxin stuff works to make *apparent* hair thickening by lifting the cuticle/scales on hair. That would change the texture even of individual strands of hair. Once the scales are lifted, their (naturally closely overlapping) arrangement will never be the same. Lifted cuticles would make hair strands rougher in texture and more prone to dryness and breakage. As the scales get chipped away, the fragile cortex within is more prone to damage.
Your hair wants to be curly. Curly hair needs (well, wants) moisture, moisture, and more moisture. To be at its maximum natural curliness, it must be well moisturized. I suggest that you detangle it with a wide-toothed comb just before or just after rinsing out a very good moisturizing conditioner; then "plop" it to wick away excess water in a microfiber turban; then dress yourself; then remove the turban to let your hair finish drying and curling as it likes. You might wish to thinly spread some additional moisturizing leave-in conditioner or a wee little bit of Carol's Daughter Hair Milk leave-in moisturizer through it while it is still wet, to further moisturize it and promote its curling and the definition of your curls. If you want your hair restrained or further styled at all, do that handling while it is still wet (not merely damp – wet); otherwise, leave it alone -- consider your hairstyling done until the next time your hair is wet and well conditioned with moisturizing conditioner. Curly hair like yours should never be brushed – Never! Nor should curly hair like yours be combed nor even finger-combed except when wet.
You could take it just that easy with your hair care. That simple routine would not undo any damage to your existing hair strands, but it would probably let your (existing and future growth) hair be about as naturally curly as it can be, and it would make your life simpler. That being said, you can fairly expect some hair changes to come with aging. Your hair will likely gradually thin as you become older, and there will likely be some hair texture changes as your hairs whiten.
Your hair is still beautiful. So are you. You will stay beautiful.
>>I went to a salon yesterday.<<
Most hairdressers seem to be all about changing hair – from longer to shorter; from thicker to thinner; from wavier to straighter; from straighter to wavier; from darker to lighter; from lighter to darker. I believe most of them see a head of hair and think: How can I change that and make it high-maintenance?
You might like to take a look through this website__
https://www.naturallycurly.com/curlreading/no-poo/the-curly-girl-method-for-coily-hair
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Hi Icietta, I appreciate your message. I've been successfully working with my curly hair for years. However, last year the curl just died. My hair has changed texture, lost a ton of curl and half the volume - which I read does happen with menopause. I'm not in menopause, but the Tamoxifen is likely the culprit for my hair changing texture (thinning) and losing volume. I used to do just as you instructed, and had great hair for decades. sigh, it's just not curly anymore in the way it was.
I don't use a straightener that is hot, I just use a round brush and blow dryer and only use it then every 5 days or so. It simply will not be curly now.. it refuses to clump together - due to the thinning and I end up looking like Richard Simmons if I don't go straight.
On the bright side, My doctor finally prescribed an 'oil' that actually has reduced the itching considerably. I've used it once 2 days ago and still no itching! The darn oil was crazy expensive ($150 a bottle), but if it stops the itching, I'll be thrilled. Part of my issue was the itching was leading me to scratch my scalp and then I think that made even more hair fall out. Just in case others are viewing this with similiar symptoms, this stuff is amazing. I'm on day 4 of the IRestore... It's easy to use, I'll give it 5 months before deciding on whether I'm keeping it or not.
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I’m having the same problem & I’m angry. I feel like I’ve been through enough for now & finally had hair again, albeit only a couple inches.
After hours of research & multiple doctors, this appears to be a common problem that cannot be adequately treated because your oncologist can’t diagnose or treat hair loss issues unless there is a proven relation with a tested treatment; and neither a dermatologist nor a GP will tell you whether it is related to hormone treatment, much less advise you as to how to treat the side effects therefrom.
This is an unfair situation and I would greatly appreciate your help in spreading the word. There needs to be documented to proof that people suffering from this are reporting it to their doctors in order to force them to start using some of the vast funds donated, toward an effective treatment.
Please encourage anyone you know that suffers from this problem to email information to Hlg discovery@gmail.com, and include “endocrine therapy related hair loss” in subject. If you wish to remain anonymous, feel feel to create a separate account & just provide the name of medication & the dr(s) you informed of your struggle.
Make no mistake, i am grateful for the advancements that have led to such successful treatments. Howevever, those of us lucky enough to come out clear after the tortuous treatments, now have to live a normal life, but having giant bald spots &/or constant shedding, makes it extremely difficult to live & feel like a “normal person” again.
Nothing can/will change unless action is taken. So please, send me whatever info you are comfortable with, to help me force the pharmaceutical companies to test the hair loss side effects & appropriate treatments, or if that doesn’t work, file a classaction suit . I want my life back.
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I started Tamox in September last year...got a small bald spot in December that is now huge...developed 3 other spots and shedding. I was getting Kenalog shots and applying a steroid cream 2x per day which seemed to keep things from getting worse...but I had to stop all steroids 2 weeks before my revision surgery next week (and 2 weeks after). My balding and shedding is getting worse now. Pretty depressing. I am usually able to get over things but this is mortifying.
Just wanted to say "me too."
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Hi Everyone. I'm checking in. The irestore seems to be helping me, especially with my hair texture. It's getting courser again - not as fine feeling, so that makes me hopeful. I've been using it for almost 2 months and I seem to have stabilized. The true test is at the 5 month mark, so I'm not there yet.. but I've stopped the rogaine and all other 'creams' and am just using the irestore helmet currently. I'm still taking double doseage Iron (Ferrous Fumarate, not the bad Sulfate one). And biotin and vitamins still. But nothing hair related on my scalp anymore.
The itching got really bad in early April and that steroid cream was a godsend. It really removed the itching. I had to use it several sessions - but now I just have a dull itch occasionally, not like the 'on fire' feeling I had with the allergy. I'm wondering if the laser therapy is also helping with that? Who knows.
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Since menopause at about age 43 or 44 I lost one half of my hair still looks ok but wow. I was terrified by more hair loss after being diagnosed with bc at 53. I took anastrozole for 1.5 years no hair loss, then exesmestane for another 2 years with no change. My neighbor couldn't believe it she was in her mid 70s when she started tamoxifen then AI drugs and her hair is absolutely awful. She is now 83 and reminds me of a scarecrow. She was on both AI drugs and tamoxifen when disaster struck. Everytime I see her she talks about how it has really depresses her. I keep telling her to go to a dermatologist or hair specialist. She isn't one for a wig but it is so upsetting for her.
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Unfortunately, depending on the type of hair loss, there is no certain cure that a dermatologist or any other physician can cure for sure. That's the case with alopecia areata. That's what I have and even the best dermatologists in Houston have no certain cure.
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i feel for you. I have diffuse hair loss/androgenetic alopecia. Advice is before you go spending money on Rogaine and such, make sure you don't have alopecia. If you do, save your money and either buzz cut it down or invest in good quality wigs.
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HI Everyone, I wanted to report that I had my iron/ ferritin checked. I'm doing much better on that front. My iron is down to 89 from 167 (which seemed too high, but my doc said was just floating in my blood and not helping since my binding capacity was above normal at 51% last time. TBC is now at 27%. That means more iron is actually getting into my system and not used up in the TBC. (you don't want to be over 50%) . My Ferritin is holding steady at 31%.
The itchiness really was stopped with the steroid oil from March.. I honestly think it's the laser helmet doing helping.. but it could be a placebo effect. But I do know my hair is regaining its coarser texture and having a little bit of curls again. Something is helping.. either the iron or the Laser Helmet. I'm much happier than I was a few months ago.
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I'm checking in. Still using the irestore laser helmet, taking iron, and of course tamoxifen.
My scalp feels nearly normal. That medicine oil must have stopped the spread of the dermatitis I was having - which I'm thinking was due to the massage lady last summer using unhygienic oils on my scalp. My hair is also coming back in and getting coarser and more like my curly hair. It doesn't feel soft or thin anymore, so I'm very happy. I'm not sure if the irestore is the reason behind it getting more body, or if, like the dermatologist insists, my body is just finally recovering from the 3 surgeries I had between 2016-2017.
She thinks I got dermatitis and my hair falling out from the stresses of the surgeries. If so, that would be great, as it wouldn't be from Tamoxifen and I'd go back into the 'side effect free' category. If the itching stopped with the oil, then it couldn't be from Tamoxifen, since I'm still taking it.
Anyway, I'll continue on with the laser helmet and decide whether I'm returning it within the next 3 months... I love that I get a full refund if I decide it didnt' do anything for me.
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Thanks for the updates, Lisey!
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Someone PM'd me asking about purchasing the irestore. I want to make this public so others are aware. If you buy directly from Irestore google their coupons - they ALWAYS have a $200 - $250 off coupon they offer on their kits / helmet. Also, if you buy straight from them you get a money back guarantee if you aren't satisfied with the helmet within 6 months. I would not purchase it from Amazon or a 3rd party dealer as you won't get the deal or the guarantee.
Now on to whether it works... at 4 months, I'm not sure... I'm using it faithfully.. it's the easiest hair treatment device out there - no mess like Rogaine and you just wear it for 25 minutes every other day. IF it works, what a simple process. However, my dermatologist swears my hair loss / texture falling and dermatitis were the result of me having 4 surgeries in 2016/2017 within 9 months of eachother. She says the anesthesia will do that to you as well. My hair is feeling much better. the itching is gone. It's still slightly thinner, but the curls are mostly back. YEAH! is that the result of the irestore or the increased iron levels and time since all those surgeries? I simply do not know.
I may be returning the irestore at 6 months and test to see if my hair starts having issues again. If it does, then I'll know the irestore really was helping it. I'm still giving the irestore 2 more months to convince me one way or the other, but I feel so much better overall about my hair.
Now if I can just get over my increased weight from the last 2 years. I need to lose that extra 20 pounds I gained!0 -
Thank you Lisey for posting. I just started on Anastrozole June 1, 2018 & am now experiencing pretty significant hair loss from that. Which led me to start researching where I found the NCBI* article you referenced & this thread.
While not a stylist I own a salon and know the topical things like Rogaine-- while they work--only work while you use them and then if you stop hair loss happens and sometimes worse than you had before. So I am trying to investigate other options besides topical Rogaine etc.
It does seem Vitamin C topical application may be beneficial for both tamoxifen and AI users (vitamin C may loco regionally reduce 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*), along with Omega 3 & 6 supplementation. These are both referenced in your article you cited, but I found some other articles which reinforce that--so am sharing in case anyone else on this thread is interested in more info:
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In a study by Sung et al., ascorbic acid 2-phosphate, a derivative of Vitamin C, was used to treat patients with androgenic alopecia (2006). The study found that there was "significant growth stimulation" in the cells located in the scalp, and the study eventually concluded that the vitamin C derivative promoted hair follicle growth in hair follicles. This suggests a link between vitamin C and hair growth, particularly in those with alopecia.
In addition, vitamin C is being used for stem-cell therapy. In a study done by Kim et al., Vitamin C was used to increase the survival and proliferation of adipose-derived stem cells (ASCs) (2014). In the study, it was found that vitamin C successfully enhanced the hair growth promoting effect of these specific stem cells, strengthening the link between vitamin C and hair growth promotion. The study also noted that vitamin C is safe and easy to use; thus, it is a good candidate for further studies on vitamin C and hair growth.
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Effect of a nutritional supplement on hair loss in women.
Abstract
BACKGROUND:
Female pattern hair loss is a frequent and distressing condition.
AIM:
To evaluate vs. control, the effects on hair loss of a 6-month supplementation with specific omega 3&6 and antioxidants.
METHODS:
One hundred and twenty healthy female subjects participated in this 6-month, randomized, comparative study. The primary endpoint was the change in hair density evaluated on standardized photographs. Secondary endpoints included changes in telogen hair percentage and diameter distribution of anagen hair (>40 µm vs. ≤40 µm) measured by trichogram. Overall changes in hair density and diameter were also measured by trichometer and by subjects' self-assessment.
RESULTS:
After 6 months of treatment, photograph assessment demonstrated a superior improvement in the supplemented group (P < 0.001). The telogen hair percentage was significantly (P < 0.001) reduced in the supplemented group. The proportion of nonvellus anagen hair (>40 µm) increased compared to the control group. The trichometer index increased in the supplemented group, while it decreased in the control group. A large majority of supplemented subjects reported a reduction in hair loss (89.9% of subjects at 6 months), as well as an improvement in hair diameter (86.1%) and hair density (87.3%).
CONCLUSION:
A 6-month supplementation with omega 3&6 and antioxidants acts efficiently against hair loss in improving hair density and reducing the telogen percentage and the proportion of miniaturized anagen hair. Objectively measured improvements were confirmed by the subjects' perception of efficacy.© 2015 Wiley Periodicals, Inc.
I also found some juicing recommendations on hairlossrevolution website under "best-natural-5-alpha-reductase-inhibitor" though not so certain how reliable this juicing site is. That being said I'm going to start using the Vitamin C topically, Omega 3 & 6 oral supplementation and Wheatgrass juicing first to see if it helps. However, would love to hear longer term update on results about the laser from you or any other things that seem to be working for anyone.
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My 5 years on tamox, and then 5 years on femara thinned my hair quite a bit. Years later, chemo caused total loss, and it did not return to pre-chemo amount or quality at all. I am so frustrated by my hair. Vitamins dont seem to make a difference, and I opted not to try rogaine. Wigs are not comfortable, so I rarely wear mine. I have a baseball cap, or a top piece. I have much to be thankful for, I know, but still miss my hair!
I would be interested in trying the topical Vit C, - I'm going to try to find it!
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Make sure it is at least 8% potency in Vitamin C. More research I have done says it has to be at least that to be effective. I did find a serum that is 20% potency at Sephora by Dr. Brandt which is the highest it comes in. For your face but I am going to try that one on my scalp. Also, try the Omega 3 & 6 that had great results after 6 months in a study. And they are easy supplements to find and take.
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Hi,
I've been taking Tamoxifen only since July 1st but my scalp is itching like crazy. I haven't changed shampoo's or anything about my diet so I'm guessing it's from the medication. Anybody have any ideas? I do have an upcoming app't with the MO but I doubt she will know what to do about this. Is anyone using a special hair brush that is easy on the hair?
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denman paddle brush is the best, worth the money.
If you have some sort of underlying alopecia or thinning in your fam, nothing works. I have both and spent a ton of money for the longest time. If the follicles are dead, nothing will work. Easy way to tell is take a mirror to your head. If its bald, smooth, chances are it's dead. There is nothing proven out there to revive dead follicles. Just keep that in mind if you are on a budget. It adds up over time. I'd suggest a trip to a good derm. Yelp around your area. There are tests they can do to see if it's too late or maybe not.
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I read this thread with great interest. Thank you to all who post here! In 2014, I developed Alopecia Universalis while taking Tamoxifen and Palbociclib/Ibrance. i see a dermatologist hair specialist at Brigham and Womens Hospital in Boston, who has tried many treatments: light therapy, steroid shots, and now acid on my scalp... This specialist says that we have many options. The specialist at Massachusetts General Hospital told me that I will never have significant regrowth... She sees a lot of patients with permanent hair loss from cancer treatments. Currently, I have short white hairs growing on the half of my scalp that is being treated with acid (nothing on the other untreated side) I also have chin hairs! (seems so wrong)... I will continue applying the acid for a year and see how much growth I get. It is not covered by my insurance but worth the cost for me. I would love to have hair! So, I hope that this works. After this, I will probably just resign myself to baldness. However, it is a constant reminder of the cancer. Again, thank you for posting your thoughts and treatments here!
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I just ordered this to try : Not sure how to use it for hair, though! Do you apply at night and shampoo out in morning? Thanks for any advice!!
DERMAdoctor Kakadu C 20% Vitamin C Serum with Ferulic Acid & Vitamin E, 2-pack
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I don't know myself how to do it. . I would try at night like you said and rub into your scalp and see how your hair looks in the morning. I think the less you wash it may be better, but depending on your hair might not work for you. I try to wash only every few days, but my hair is dry and used to be very full. . .now it is thinning but still very dry. If you are oily or thin you might wash every day. Sometimes those oil serums really absorb in though without leaving too oily a film. I plan to put on at night and during day (so apply 2x daily) if I can get away with it not looking too bad in my hair for during the day.
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veeder, I hear you on the itchy scalp.. that was the worst for me. The oil I posted about earlier really helped (it was expensive but a huge success). My scalp STILL itches occasionally, and I've started to notice it's on the second day after my LLLT helmet days. Then I use the helmet and the itching goes away for a day or two. I have no idea if the light therapy is helping the itching, but it sure seems that way. I'm not using oil or anything else but the light therapy. I'm probably going to keep the helmet rather than return it just because it really is helping control the itching.
There is a good possibility I will be off Tamoxifen by end of year - as I suddenly have a fibroid and thicker uterine lining. (I just had a biopsy today). So they may do the hysterectomy/ooph earlier than I planned (I'm only 43). But I'm trying to be flexible and go with it. It would suck greatly if AIs made my hair start falling out again.. I feel like I'm 90% back to my old hair at this point.0 -
Lisey it seems you also think the LLLT helmet really worked for you? If so how often and for how long are you using it? Just read up on the studies that sound like it is effective even for women's hair androgenic hair loss.
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Mystical, I've decided to keep the Irestore LLLT therapy helmet. By far its the EASIEST solution I've found. You wear this comfortable helmet for 25 minutes every other day and that's it. no creams, no oils, nothing. I have no idea if it's the reason my hair isn't falling out anymore, but I do know that it keeps the 'itchiness' at bay and it's so comfortable, I'll probably just continue with it indefinitely. The other thing that is interesting is I started noticing my hair was turning gray last year.. but since I've been using the irestore for the last 5 months, my hair is much redder than it was... I don't know how, but it seems to be reviving my hair.
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Hi Everyone, just checking in. So I know I've been waffling back and forth on whether or not to keep the irestore. I've gone 5 days without using it and still no itching. I was thinking perhaps the irestore kept the itching at bay. In any case, I'm nearing the 6 month return period.. and my hair is nearly back to normal from a year ago. I think the dermatologist was right, the itching was from a skin infection (from the darn massage lady) and the hair thinning was from all the surgeries so close together. I'm going to return the irestore and wait and see if things go south. If they do, I'll just buy it again from my girlfriends house and name.
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Keep us posted, Lisey!
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I have an appointment with a dermatologist tomorrow. My oncologist wanted a full body look see as she indicated the we lucky folks with BC are at higher risk for skin cancer amongst other fun things. So while I am there I want to speak to her about a plan of attack to keep my hair as healthy as possible. I am on bottle #2 of 60 . Yup I will be counting them down. If I get any good ideas I will pass along.
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