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Keeping our Hair Healthy while taking anti hormonals

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    415 and Special K, it is always good to be informed about what your rights are under the law. There are a considerable number of patients that are looking for answers. 415 was diagnosed Stage IV in 2010 and assuming that is when she did Taxotere, it is questionable whether she was told or not. No matter what, there are always solutions to looking and feeling our personal best.

    Local cancer centers may also have new wigs donated by patients that never wore them. Special K, thanks for the link. I am sure that many women could benefit from services such as this.

  • gkbuser
    gkbuser Member Posts: 300
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    wintersocks, I am following as well as I would like to know this from women that have finished the drug. I have only been on letrozole for 1 year and feel like I just barely made it. I have even taken holidays off the med. I find the thought of this for 4 more years very daunting. I think I will freeze if they even mention 10!

    4152010 I really feel for you. Sounds like you have tried just about everything. I can understand being done with the wigs if you have had to wear them for so long. I imagine just letting your head breath at this point feels good. My fervent hope for you is that since it continues to get thicker no matter how slowly that it will continue to do so! I wish it would happen overnight for you. I am so glad that we have these drugs to help, but doggone it! The hair loss is so disturbing! Also so expensive! We live on such a tight budget so I dont want to use super expensive products. I am in the process of trying different type of products. I want to go to more natural products (something I never worried about before.). paraben free etc. Trying Burts Bees now. They are not too expensive and more natural. I am not a big believe that you get what you pay for is always true. Sometimes I feel like price just has to do with paying for a brand name. I have found some nice products that don't break the bank for make up and body wash that work great!

    Has anyone heard of or checked into inversion to help with hair growth? I know it is a shot in the dark, but I feel like enough people are at the point that they would try it if their doctor was ok with it and it is essentially free. I know that each hair follicle has blood supply so it is the idea of hanging your head down for a bit a couple times each day to increase blood flow with a warm oil massage or simply dry finger massage. I used to do this to help my complexion. Dont know if it would work, but it makes sense (at least on the surface). I know that our hearts pump blood up there but with gravity if we could get more to the area makes sense that maybe it would help. Obviously one would have to make sure that there are no other health risks like migraines, or something that could get worse with this. I am pretty sure a traditional medical doctor would laugh at this idea, but I don't care. I used to use what was called an inversion table at the gym I went to regularly for back pain. MD was ok with it, but didn't think it would help. I thought it really helped. For skin and hair you don't need the special tilting table you can just do it off your bed. People will probably think I am crazy here even mentioning it. Just wondering what people think.

    Hugs to all you beautiful women trying to stay beautiful through all of these treatments,

  • gkbuser
    gkbuser Member Posts: 300
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    gigibee and Michelle, I did not know that radiation to the breast would cause hairloss. I knew radiation to the head did. I had breast radiation and never thought of that. Thanks for the info!

  • 4152010
    4152010 Member Posts: 9
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    SpecialK, I tried the Intralace System a couple years ago. It did not work for me, and I ended up losing a lot of money. It felt horrible on my head, the hair underneath can’t be washed properly, gets dirty and itchy. There’s a lot of maintenance involved. I had a total meltdown over this option

  • specialk
    specialk Member Posts: 9,237
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    4152010 - Oh man! I am so sorry it didn't work for you and that you had problems with it, but this is super valuable info going forward for me personally, and for this thread. I hate that it was a struggle for you but thanks for letting me know!

  • 2ND20
    2ND20 Member Posts: 19
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    Hi there. I am just about to start tamoxifen.Can you share other side effects that you may have?

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    2nd, hope on the uplifting thread on the hormonal forum. It chronicles my journey and decision to take Tamoxifen.

  • gkbuser
    gkbuser Member Posts: 300
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    4152010 I had a short communication today with a woman who had severe hair thinning from her anti hormonal therapy. She said she used a shampoo and conditioner called Avalon Organics biotin B-Complex and she felt like it really helped her. I just thought I'd share.

  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
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    I'll chime in here. I am friendly with a woman who has passed her five years on blockers. She has reported that in just one month her hair is thickening and visible new growth, so that was very encouraging. Yes, both my MO and a dermatologist have emphasized messaging the scalp for blood circulation, and common sense tells me inversion would be great and I have thought about this in the past but have not yet tried.

    4152010, I have had good results with the Rogaine. I also was advised to use the men's formula because it is stronger and only needs to be applied once a day so it is also cheaper. The new stands are thin and fine, grow in white and fall out when I attempt to discontinue the treatment but it might be worth a try. Use caution not to get in on your face as it will grow hair there too.

    As for me I will need make a small investment in a good conditioner as my hair is VERY dry from the blockers. Also I am looking for a root booster. I am currently using a product called Nuance Volumizing Tonic. It works great but it comes in a small bottle that I can blow thru quickly, and so only use it for when I want to look my best.

    It is all so very discouraging watching my hair continue to decline over time but again I thought it very good news that it is possible that this will reverse once the blockers are discontinued. FYI...I had terrible hair loss on Arimidex. Femara has been much kinder in that regard.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Nojust.....That is great news!!! Today, my hair stylist told me how nicely hydrated my hair had become. I have been layering the conditioners and putting the Lanza oil in it a couple of times per week. I just returned from Vegas and saw the Sohostyle hair place in the Fashion Show Mall. I am thinking of getting an 18 inch ponytail to attach to my longer hair. They have all types of hair pieces, both synthetic and human hair. I am looking at the Christy in #17 color, it is synthetic and excellent quality. There is hair that can be clipped to the top of the head, hair on a wire, and many others. I do like the Christy and am debating on whether to get it or not. It could come in handy for quickly getting ready at the last minute It would be 18 inches long and I tried it on in Vegas at the mall.

  • Icietla
    Icietla Member Posts: 321
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    I think this view is from late summer or early fall, 2015, several months before I was diagnosed and my treatment started.


    This view is from summer, 2016, when my hair loss was beginning. It would get much thinner.



    Regrowth has since filled in the bare spots on my scalp, so my hair is no longer see-through around my head.

    https://community.breastcancer.org/forum/78/topics/863206?page=1#post_5166958

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    What do you think caused the fallout? What have you been doing to regrow your hair? Do you think it was Femara?

  • mysticalcity
    mysticalcity Member Posts: 184
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    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 PMC4864803 about "Management of hair loss associated with endrocine therapy in patients with breast cancer". I then also started searching this forum for info. Many seem to be using Rogaine or similar, however while I am 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 (of 8% or higher though to effective) 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 the article above, but I found some other articles which reinforce that--so am sharing in case anyone else on this thread is interested in more info:

    *************************************************************************

    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.

    ****************************************************************************

    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 possibly Wheatgrass juicing(although I have to check first to see about estrogenic activity of Wheatgrass). Someone on the tamoxifen thread also mentioned iRestore laser light cap she was using that seemed to be working for her. It's pricey but she ended up keeping the unit as she felt it really helped.

  • miranda2060
    miranda2060 Member Posts: 207
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    Thanks for sharing this, mysticalcity. I'm wondering about getting some of this solution.

    I just returned from my hairdresser, who noticed right away that my hair was thinner (have been on anastrazole several months, also had radiation and surgery). I've always had a phobia about losing hair, so I'm freaking out a little bit. I did know it was probably thinning, because for the first time ever, I got a sunburned scalp after a day at the pool. It's not bald in patches or anything, just less full than it was (which was pretty luxurious).

    I bought a kit of the Paul Mitchell Tea Tree anti-thinning shampoo, conditioner and tonic. My hairdresser reports that she has a male client who has done well with it. She cut my hair shorter than usual and curled it up so it looks fuller. At the same time, I've been experimenting with letting my gray grow in naturally (trying to stay away from chemicals, which I fear will hasten hair loss). So that makes me look a little MORE scalp-y. I may have her do some highlights/lowlights to blend things in more. I was afraid of so many things when I started the AI, which haven't happened -- but the hair loss really gets me. I'm glad to know I'm not alone.

  • Icietla
    Icietla Member Posts: 321
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    I think it was having four surgeries in five months, a long time of stress (generally indicated in that post linked in my prior post), and the medicine too.

    My husband says that each successive surgery was harder on me. He says that with each successive surgery, it took considerably longer for me to wake up. All those surgeries were done at early morning times. After the last one, I did not start coming around until about 3:30 pm.

    I suspect the medicine too, because so many report having thinning within a few months of their starting on it. I am in another online breast cancer support group in which two members report that after some fallout a few months after their starting on anti-hormonal medicine, their hair has grown in thicker than ever.

    My hair grows rather quickly. I live in a (usually) warm place, and I take lots of rest. I must rest most of the time.

    I do not do much with my hair. I wash it (with my head tipped down forward) when it needs washing; condition it; detangle it; and braid it or bun it until its next detangling. Bunning it is very difficult and painful (for my arms) to do, so I do not often have it bunned. To detangle it, I lift sections with one hand to move the hair through my Mason Pearson rake comb held in my hand having even less reach. With my head tipped down forward, I can reach the hair on and around it with my rake comb; otherwise, I use a longer comb to reach that hair. My husband gets my braids started and going to where I can (reach to) take over, and I use the stems of doorknobs to keep my braiding within comfortable enough reach.

    I use only silicone-y type conditioners, except when I baggy my hair with Carol's Daughter Black Vanilla Hair Smoothie after clarifying. I generally hide my hair when I leave home, and I always hide it for Cancer Center visits.

    You may wonder why I would bother for such thin hair. I have asked myself that many times. There was always this answer -- Because it is my hair.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    The surgeries do take a toll on your hair. I had two major surgeries within 6 months, but the radiation seemed to trigger my hair loss. I was obsessed with my hair loss, and watched it try to grow. When I finally purchased good products, and mixed and matched them, stayed away from thinking about it, my hair came in. I have been using living proof, monat, amika, and other product lines. I don't worry, but trust that my hair will return to the way it was prior to diagnosis.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    The surgeries do take a toll on your hair. I had two major surgeries within 6 months, but the radiation seemed to trigger my hair loss. I was obsessed with my hair loss, and watched it try to grow. When I finally purchased good products, and mixed and matched them, stayed away from thinking about it, my hair came in. I have been using living proof, monat, amika, and other product lines. I don't worry, but trust that my hair will return to the way it was prior to diagnosis.

  • miranda2060
    miranda2060 Member Posts: 207
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    I'm going to talk to my MO about the anastrazole and hair thinning I'm experiencing. I'm wondering if anyone has had a different experience with another AI. Is it in this thread or another "hair" thread that someone reported taking name-brand Arimidex and doing much better hair-wise? (I take the Teva brand anastrazole).

    I'm pretty upset about it and have actually stopped taking the pills for a few days. Just reluctant to accelerate the hair loss, but don't know what to do.

  • mysticalcity
    mysticalcity Member Posts: 184
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    I'm also on Teva brand so if you find out if brand name Arimidex is better hair wise, please let me know as I am also very upset about the hair loss I am experiencing. I felt like I could kind of handle the teeth pain, aches and even the dental stuff I am already experiencing, but the hair loss is really distressing for me. And I am only at month 2 and they want me on it for 5 years at least.

    Also I just found this and am wondering if anyone on this topic has used this at all with any favorable results: https://www.nutrafol.com/product/nutrafol-women/?v=11

  • janett2014
    janett2014 Member Posts: 2,950
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    I highly recommend finding a dermatologist who deals with hair issues. It has been very helpful for me.

  • miranda2060
    miranda2060 Member Posts: 207
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    Hi Janett2014, what has your dermatologist recommended? I would like to know that there is some kind of solution aside from stopping the AIs. Thanks.

    mysticalcity, I feel exactly the same way. Woke up at 4 a.m. in horror over the whole thing.


  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    What about trying Tamoxifen? It works differently in the body and maybe could work differently on your hair as well.

  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
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    I was on Arimidex and had quite extreme hair loss so I was switched to Femara and have faired much better though still thinning. My MO said that Femara has a lower incidence of hair loss than Arimidex but who knows. I think it is more how the drug affects an individual. The good news is that a dear friend has recently gone off her blockers and has seen much thickening and new growth so that is encouraging.

  • miranda2060
    miranda2060 Member Posts: 207
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    Michelle, when I discussed my fears about starting anastrazole with my MO, she said Tamoxifen was an option, but with higher risks. I'll have to talk to her about the hair situation and see what she suggests.

    NotBroken, that's good to know, maybe Femara is an option. Just wondering, did your friend complete the 5 or 10 years, or just decide to stop the blockers? I'm so tempted to do that, but also scared. Yes, it is encouraging that the SEs are reversible, at least.


  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
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    Miranda, my friend did 5 years. Also with the terrible hair loss on Arimidex I was blown off, told that was great because we knew the drug was working. I continued to voice my concerns and was told all the ALs work the same so switching would not help so finally I was willing to forgo the protection and go on Tamox. OMG.... that made me utterly insane and instead of thinking it was the Tamox my MO said I was mentally ill and I put myself into an outpatient program for mental illness. Fortunately with an insurance change I had to switch MOs and she immediately took me off Tamox, researched the hair loss and thought Femara was a better choice and Aromasin still another option. My insanity was the damn Tamox and to this day I despise that doctor and his lack of empathy and realization of these powerful drugs and their SEs. This new MO was a woman and far more sympathetic to hair loss while that other bald headed 80 year old freak said the drug was working exactly as planned. No, if one drug causes hair loss try another. I am still experiencing gradual hair loss and thinning but NOTHING like with Arimidex.

  • janett2014
    janett2014 Member Posts: 2,950
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    miranda2060,

    I go to a dermatologist who treats many patients with hair issues. I have been pleased with the results.

    Here are the over-the-counter treatments he has me on: Organix brand biotin & collagen shampoo and conditioner, supplements (pills): cinnamon, fish oil, baby aspirin, Biotin, vitamin D3, Z-Bec vitamins.

    Here are the prescription treatments: liquid Minoxidil I put on my hair four nights a week, liquid Biotin I put on my hair three night a week, Ketaconazole shampoo twice a week, and vitamin injections in my scalp every four months (not as bad as it sounds). Lastly I take one Rx pill: Pentoxifylline for blood flow.

  • miranda2060
    miranda2060 Member Posts: 207
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    Wow, NotBroken, what an incredible and infuriating story. I agree that the docs can be very unsympathetic to the SEs. I voiced my many concerns to my MO and my BC psychotherapist before starting the anastrazole, because I knew getting rid of estrogen was going to have some deleterious effects. They are very focused on the research supporting these protocols. My oncotype is not that high, so I'm seriously considering going off it entirely. But I will explore the option of Femara with the MO.

    Janett, that is interesting. Just wondering if insurance covers dermatology if it's related to the cancer.



  • janett2014
    janett2014 Member Posts: 2,950
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    miranda2060,

    Treatment for thinning hair (no matter the cause) is covered by my insurance. I would think that most, if not all, companies would cover that medical condition.

  • miranda2060
    miranda2060 Member Posts: 207
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    Thanks, Janett2014.


  • snickersmom
    snickersmom Member Posts: 599
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    I have been on Arimidex since June of 2017. I have always had very thick, coarse hair. I have not really noticed any hair loss, thankfully.

    I do have a different question and can't find a forum that addresses this - does anyone take Coenzyme Q10 and or Vitamin B6?

    Snickersmom