Bottle 'o Tamoxifen

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited July 2017

    I had accelerated hair loss for about 6 to 8 months. I started taking biotin and it slowed considerably. I have more brittle hair, but I cut off the biotin and the hair loss hasn't worsened.

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  • klrsar
    klrsar Member Posts: 4
    edited July 2017

    ScaredHi Pi-Xi, my loss is in the front hairline as well. I was losing hair prior to my diagnosis, but no where near at the rate I am pulling hair out of the shower drain now. Globs of them. I don't think I can use Rogaine as I also have liver issues. I don't want to go off this as they are telling me it is the best choice for me. 

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  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    Yes, be wary of Rogaine as some does go in your system via the blood supply in your scalp.

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  • Blownaway
    Blownaway Member Posts: 760
    edited July 2017

    I have hair shedding problems also. Never had thick hair but this is disheartening. It's so thinned out behind my right ear, I do a Donald Trump comb over. Also, it grows very slowly. I had a haircut and told her not to cut the hair on the right side the same as the left side....it's taking forever to grow back out. Maybe 1-1/2 inches a year. Does anyone else have severely dry skin that takes forever to heal if you get a cut/scratch/abrasion?

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  • katcar0001
    katcar0001 Member Posts: 621
    edited July 2017

    blownaway - I had scary dry skin on Tamoxifen, like a mummy, and severely dry skin on my, ahem, vulva and other private parts to the point where I had cracks and pain. No hair issues other than dryness. I have been off Tamoxifen for two weeks. Still have ear ringing, but withdrawals seem better, and I am sleeping better and not feeling so emotional. Have taken 7 Anastrozole pills so far and will transition over to that forum. So far, so good--no SEs other than bearable hot flashes. Do worry if I am truly in menopause or not. Will be getting hormones tested next week. Just could not get an accurate reading whileon Tamoxifen.


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  • mstrouble16
    mstrouble16 Member Posts: 198
    edited July 2017

    Well, I now have a new a wonderful side effect from Tamoxifen, like i didn't already have enough! So here's my list of side effects to date and I now have been on the wonderful pill for 5.6 years.

    Hot flashes, night sweats, mood swings (oh the rage at times, lol) bone and joint pain, muscle pain, stiffness, blurred vision, insomnia, hypertriglyceridemia (my new side effect), thickening of my uterus and a mass causing me to have a total hysterectomy and under no circumstances can I change brand of Tamoxifen.

    When I went to the oncologist last he asked so still have hot flashes told him yes and listed the others I was still having he looked at me and said, well Tamoxifen is still working, and he chuckled. He seems to think my body is processing it well which is why the long list and some rare side effects. And he definitely believes that each brand has different side effects which I TOTALLY agree.

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  • twiggyOR
    twiggyOR Member Posts: 270
    edited July 2017

    I am also experiencing hair shedding and my hair was not thick to begin with. I first noticed it in January after about 8 months on tamoxifen. My hair is getting so thin I've been thinking I'm going to have to get my wig out again. With the major hot flashes I'm not sure I can tolerate wearing a wig though. What are your best suggestions for reducing hair loss?

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited July 2017

    Twiggy, I stopped washing my hair as often and used dry shampoo in between. I also used good leave in conditioner so that when I had to comb my hair, I didn't have to pull on it as much. I also started taking high dose biotin. Something worked because I am one year on tamoxifen now and the hair loss has slowed considerably back to almost normal.

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  • Lorri70
    Lorri70 Member Posts: 191
    edited July 2017

    I decided to stop taking Tamixofen because the oncologist said it was my choice gave me statistics low chance of getting it again etc she didn't sway either way when I asked if she were me what would she do, I had Paget's and Dcis I did a bit of research and I'm happy to chance it, I was fine on Tamixofen at first but I'm having major hot flushes I'm feeling quiet down and I'm cranky shouting at my kids so I decided I'm done with it I'm 46 and I was starting menopause anyway so I'll probably still have hot flashes we'll see.

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  • ndgrrl
    ndgrrl Member Posts: 741
    edited July 2017

    hi. I was wondering what brand\manufacturer of Tamoxifen everyone it taking? When I was first on it I got either Teva or Watson. This time around I was given Maylan and having way more side effects.

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  • BucsGirl
    BucsGirl Member Posts: 191
    edited July 2017

    ndgrrl, I'm currently taking Teva. I get the same side effects. I haven't tried any other brand/manufacturer.

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited July 2017

    Teva. No major SEs. But only 4 months in. (Also took Mylan for one month -- same.)

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  • superius
    superius Member Posts: 340
    edited July 2017

    Teva/Maylan. no noticeable side effect except hot flashes once in a while.

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  • Sheri64
    Sheri64 Member Posts: 113
    edited July 2017

    Anyone getting really stiff joints on this wonderful Pill, I have a very high tolerance for pain but I was in tears this weekend just trying to get around. I am taking Turmeric and just upped it to twice a day but not helping. We got a new puppy and you know you need to chase them everywhere so that isn't helping either.

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  • GoKale4320
    GoKale4320 Member Posts: 599
    edited July 2017

    I'm wondering if Glucosomine Chondroitin (sp?) will help with stiff joints or if it is even allowed with Tamoxifen. I'm not taking Tamoxifen at this point, but I do have stiff joints either due to chemo or radiation (PFC 3months, Post rads 2 weeks) or just from not getting proper exercise over the last 6 months. Thinking about adding Glucosomine to my huge vitamin intake.

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  • willowreed84
    willowreed84 Member Posts: 47
    edited July 2017

    I have stiff joints in my lower body. I take magnisum and turmeric, they help some. I have been feeling better this summer, I think swimming is helping.

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited July 2017

    I have not started on Tamoxifen yet as my radiation is just getting started. I did get the script filled though and the mahufacturer is Actavis. Is anyone else taking that brand? Just wondering what I'm getting into.

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  • Sheri64
    Sheri64 Member Posts: 113
    edited July 2017

    I'll try adding Magnisum I take turmeric now it was helping but not anymore. It is the worse when I try to get up. Once I am moving a little better.

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  • katcar0001
    katcar0001 Member Posts: 621
    edited July 2017

    I had terrible hand pain on Tamoxifen, which started two years after I started on it. I found that humid weather really affected it. I started taking more magnesium as well, and I think it helped.

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  • ndgrrl
    ndgrrl Member Posts: 741
    edited August 2017

    Lego, Activas is made by Teva. I just started on this one after being on Mylan which is also a Teva manufacture I found out. Its all very confusing.

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  • katcar0001
    katcar0001 Member Posts: 621
    edited August 2017

    Well, I never thought I'd hear myself say I am happy to be postmenopausal . It took about a month for Tamoxifen to clear my system to give me an accurate reading: FSH = 47 and estradiol = <10. So far, I am staying on Anastrazole and not going back to Tamoxifen. Just thought you should know because Tamoxifen can increase circulating estradiol levels in premenopausal women, and it may be hard to determine if you've reached menopause while on it. I had a precipitous drop in my estrogen levels, so that explains my emotional lability.

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  • lala1
    lala1 Member Posts: 1,147
    edited August 2017

    Sheri64---I have been on Tamoxifen for almost 5 years and started with pretty severe joint pain. Turmeric definitely worked for me and has allowed me to be mostly normal for all this time. I do find my joint pain is better is I work out every day but this summer I'm in the position of not having access to a gym but can swim every day and I have to say this is the best I've felt! I think swimming is really good for those of us on Tamoxifen if you can do it. I will admit that I've gotten a bit soft from not doing my yoga or weights but I no longer have any joint pain so I'll take what I can get!


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  • illimae
    illimae Member Posts: 5,710
    edited August 2017

    sheri64, I started tamoxifen a couple weeks ago and have only had some night sweats until today. Today everything hurts, knees, ribs, neck, even ear lobes. I'm hoping it's mostly related to sleeping stiff on my back due to remaining surgical drain and a sore neck from yesterday's rads simulation. If not, I hope it gets better as I had to hit the pain killers.

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  • ParisParis
    ParisParis Member Posts: 32
    edited August 2017

    EastcoastTS:

    Ovarian suppression plus AI is not without risks, it carries a higher risk for cardiovascular disease and bone loss is more pronounced. Virtually all side-effects are stronger with OS with AI than with AI alone: higher rates of hot flashes, fatigue, muscle and joint pain, more vaginal dryness and atrophy, further decreased loss of libido, etc. Also, there is no proof of overall survival benefit. That is why higher-risk patients are recommended to receive ovarian suppression in addition to endocrine therapy, but lower-risk patients are not.


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  • Sheri64
    Sheri64 Member Posts: 113
    edited August 2017

    illimae, Try taking the Turmeric it ready helped me. I have been on Tamoxifen a little over a year now and just now the pain has gotten worse in my lower legs. I just doubled the Turmeric hope this will help. Make sure if you try get one that has pepper in it absorbs better. I get mine off Amazon.

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited August 2017

    Thank you, ParisParis!

    Great information as I research options. Nothing is without the risk, is it? Sigh.


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  • illimae
    illimae Member Posts: 5,710
    edited August 2017

    Thanks Sheri, I'll try it. As soon as I was dxd DH was in research mode, we had stockpiles of tumeric, some black seed pill and a few others. I was off them during chemo but will start again :)

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  • TinyDancer5
    TinyDancer5 Member Posts: 232
    edited August 2017

    Thinking about getting a bottle of Turmeric and Magnesium too. Can you please tell me what brands you like the most?

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  • lala1
    lala1 Member Posts: 1,147
    edited August 2017

    Tiny Dancer-- I take Gaia Turmeric based on my holistic doctor's recommendation. And I take the KAL magnesium glycinate. Both work really well for my muscle and joint pain. I also take ginger which helps with inflammation and is a good supplement to the turmeric.

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited August 2017

    don't know how i would handle the joint pain without my Gaia turmeric with black pepper and magnesium!!

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