Bottle 'o Tamoxifen

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  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    Yes. On tamoxifen, it came out in large amounts in the shower. My hands would be covered in hair - when I say covered, I mean covered. Reminiscent of when I had chemo 30 years ago. The hair loss is less on letrozole, but I'm also taking 5000 of Biotin everyday now too. Some days its worse than others but I can't figure out a rhyme or reason to it. I notice that my hair is not as full, but no one else has said that they have (and I have plenty of people that would say something for sure.) No bald spots, just thinner.In addition to Biotin, one of the nurses recommended a product called It Works if the Biotin didn't help. So far the Biotin seems to be working so I haven't had to try anything else, but I wanted to throw that out there in case you needed it. I hope this answers your question!

  • Blownaway
    Blownaway Member Posts: 760
    edited June 2018

    Thanks, Lula! I'll get the biotin. I've been using men's rogaine for many years and used to take biotin also but forgot about when chemo took all of my hair.

  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    I use the Natro brand. Only 1 capsule!


  • KarenZ0305
    KarenZ0305 Member Posts: 487
    edited June 2018

    hi ladies. Just want to jump in with a little fyi about biotin. If you take synthroid keep an eye on your levels. I started taking biotin and it threw my levels all out of whack. My endocrinologist told me a recent study shows it doesn't interact well with synthroid.

  • Artista964
    Artista964 Member Posts: 530
    edited June 2018

    Agree with not assuming vitamins are safe for you even at ok mg. My dad who has left side weakness was taking 2500 b6 daily. His neurologist told him to stop as it makes his neuromuscular problems worse. He's doing a little better along with PT. You just never know about interactions with not only other meds but other illnesses as well. Never thought the 'good' vits not taken in excess as directed could cause more problems, let alone with herbs and supps. I take nothing except D3 cuz I was low and baby aspirin for protection against stroke and clots while on T. Otherwise, it's foods, the sure fire source. I have no other health issues and never have.

    So much for no such thing as too much vit b's since excess gets peed out. Not before it's gone around your body first!

  • runor
    runor Member Posts: 1,798
    edited June 2018

    BLownaway, hope you have better luck on a different drug. Like you I take 1/2 a dose a day and still have the full range of side effects. But the hair! Oh my god I have half the hair I used to. I had to put a doodad in the tub drain to catch it because it is a clogging hazard. It's everywhere. It's falling out constantly. We can't get through a meal without someone finding a hair in their food. I'm going to have to start wearing one of those little hair net thingys. Lovely.

  • shelabela
    shelabela Member Posts: 584
    edited June 2018

    I think hair loss may be the only SE I don't have. My hair is growing very fast. And the curl and body it has. Love it

  • ThreeC
    ThreeC Member Posts: 92
    edited June 2018

    I started Tamoxifen around December and my hair has just started falling out everywhere too. Luckily my hair was VERY thick to start with. I find it everywhere. It feels like spiders 🕷 on my skin. I look down at my laptop, plate, floor...it's everywhere. Anyone know if this is a passing SE or can it all fall out? I had a new passport picture taken and the light was shining through my hair to my scalp. Wonder

  • Jadalulu
    Jadalulu Member Posts: 57
    edited June 2018

    I started tamoxifen in January and have just noticed my hair thinning too! Calling my oncologist tomorrow to see what he suggests to take, but I'm hoping it's just a temporary SE.

  • Humblepeace
    Humblepeace Member Posts: 118
    edited June 2018

    Hello All,

    This has been the most informative and supportive thread for me over the last six months. I have now been changed to Arimidex/Anastrozole due to being post-menopausal. I will have to search the site for another thread that will hopefully bring me up to speed on “All things Arimidex” . God bless you all with continued well health.

  • Trvler
    Trvler Member Posts: 3,159
    edited June 2018

    I have been on Tamoxifen since January 2016 and only recently did the hair lost get bad.


    Also a word about Synthroid. My friend (a guy) was telling me how he was having thyroid issues and the doctor wanted to put him on Synthroid. He didn't want to take it so he did some research and found evidence that fasting can jump start the thyroid. Fasting can be in different forms...not eating one meal a day, not eating for one day a week. He now skips breakfast every day. And his thyroid got better. Just an FYI. I thought it was really interesting. It make me wonder what other things could be helped by fasting.

  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    on the synthroud and thyroid issues topic-any alternative methods you try, be sure to get your thyroid levels checked at least every 6 months to check for any change. Abnormal TSH levels can lead to lethargy, depression, cause heart problems, etc. not something you want to get out of hand.

  • TaRenee
    TaRenee Member Posts: 464
    edited June 2018

    I. Am. Falling. Apart. For real. My hair on my head is thinning, I’m getting a bit of a mustache and the chin hairs are super noticeable ( why can’t those be grey rather than black??? ) And I’m pretty sure my legs are BOTH coming apart at the seams. The cramps tonite are relentless. Toes to knees on both legs. I can’t walk it off. Can’t rub it hard enough to loosen up. And then my hip started to cramp. I sure hope these SE fade away. If not, I’m pretty sure they are going to drive me nutso!! Any suggestions? I’m already taking magnesium. My potassium levels stay on the high end of normal.

    Today I was on my feet all day standing for test administration. Tomorrow I will be proctoring 2 or 3 rooms (which means tons of walking) for about 4 hours. I’m tired just thinking about it

  • Mast2017
    Mast2017 Member Posts: 4
    edited June 2018

    I'm not sure of your previous info but from these. Se...r u in tamoxifen

  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    TaRenee-, I’m so sorry. Have you tried Curcumin? It can help with some of the pains. If your potassium is low/borderline a banana a day can also help. Biotin for the hair thinning - It Works supplements if Biotin doesn’t do the trick. Laser hair removal for those facial hairs. Curcumin, biotin and laser have all helped me tremendously. If SEs continue to negatively impact your QOL you can always ask MO about switching to an AI. If you’re premenopausal, you’d have to take an ovarian suppressant. I had an oophorectomy and made the switch....SEs are far more manageable. Good luck tomorrow!🍀

  • PrincessButtercup
    PrincessButtercup Member Posts: 200
    edited June 2018

    Hi all, starting Tamoxifen tomorrow and I'm not looking forward to it after reading through some of the posts here. My hair was just starting to grow back.

    Buttercup

  • ThreeC
    ThreeC Member Posts: 92
    edited June 2018

    TaRenee, Have you had your calcium level checked recently? I was first put on Femara and the leg cramps were horrible. I read on that site that Claritin ( not Claritin D) helped. I take it for seasonal allergies, but it did somehow help. The other thing is chewing tums if it is Calcium related. My parathyroids were damaged when my Thyroid was removed. I was told by my first Endo to chew a couple if my muscles were cramping. My right shoulder muscles attack me every couple of weeks and it only takes a few minutes for the tums to do their magic! Good Luck!

  • VL22
    VL22 Member Posts: 851
    edited June 2018

    I stopped taking Tamoxifen last Friday after 3 months. I plan to start again, but I just feel wrong. I just made an appt with my pcp, because he listens better than my MO, who says my tingling/ numb skin (face, scalp, hands, legs)has nothing to do with Tamoxifen. I’m also getting cold/shivering spells, but no fever. It’s just very hard to feel like this every day and not stress

    I did read that people who go through chemo and radiation have a tougher time with Tamoxifen. Makes sense to me - we’ve been feeling like crap for months! I’m just really sad that I can’t feel normal.

  • PrincessButtercup
    PrincessButtercup Member Posts: 200
    edited June 2018

    VL22- I had tingling/itching/numbness in my arms, hands, and feet for weeks after chemo was over. My RO and MO both said that it couldn't be from chemo since that was long gone from my system (finished chemo in April 2018). But the RO prescribed Gabapentin, anyway, and it has helped.

    But I think you're right that we just feel awful after a long slog of treatments. I'm just starting to feel like a human being again and started my tamoxifen this morning. I hope you feel better soon.

  • VL22
    VL22 Member Posts: 851
    edited June 2018

    Thanks PrincessButtercup - some days can just get to me. So great to be able to get support here

  • vampeyes
    vampeyes Member Posts: 1,227
    edited June 2018

    Did you guys know there are different types of magnesium? If so do you know the correct one to take for muscle spasms/cramps? I asked my naturalpath about it yesterday and I forgot what he called it. Thanks all.

  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    probably magnesium citrate. Same for calcium supplements-you want the calcium citrate ones.

  • SLL101984
    SLL101984 Member Posts: 222
    edited June 2018

    Hi ladies....just picked up my first bottle of tamoxifen and I saw a few posts about people doing better on the drug when they take it made by certain manufacturers. I’m hoping I can find some people with this same pill I got. It looks like it’s made and distributed by Mayne and has a wpi on one side and a 2233 on the either. Just curious how this event have done with side effects on this one vs others. Thank yiu

  • Pamela23
    Pamela23 Member Posts: 510
    edited June 2018

    I've noticed my breasts are fuller since starting tamoxifen 2 months ago--anyone else feel that way?

  • jpBCfree
    jpBCfree Member Posts: 78
    edited June 2018

    There is a lot of solid research about the benefits of fasting to boost/strengthen immune system (so we can naturally fight off mutant cells)...I found the book The Longevity Diet very informative and applies to overall aging as well as post chemo care. The researcher who wrote the book also involved in an excellent 5 day fast program which I'm about to do called ProLon. My friend who had advanced stage cancer said her oncologist highly recommends post chemo and she said it was great because it's not starvation for 5 days but a set amount of food/drink such that your body responds as though fasting.

  • Dani_fd
    Dani_fd Member Posts: 74
    edited June 2018

    hi hi hi, I’m ready through a few of the pages here, I’m new to hormone therapy, I start tamoxifen in 2 weeks after I get back from vacation to Tillamook, Oregon. I was told this would be the best place to get input on the dazzling side-effects or lack thereof. Nice too see smiling faces :)

    37 & Strong, stage IV hasn’t been too bad a sh**storm, diagnosed right out the gate almost to my year benchmark too, lucky to have options, getting tired of the infusions, I know I can’t quit but some days (today) I just don’t want to wake up early to go for the treatment. I’m a lifer.

    Cheers,

    Danae aka Dani/Dann

  • Humblepeace
    Humblepeace Member Posts: 118
    edited June 2018

    Hi All,

    I have a question about Fish Oil (Omega-3) supplements. I just recently started to take one capsule a day in the last 12 days. I found that after reading the label there was soy and vitamin E also in the capsule. So, I began to search online and found that the majority of fish oils have both soy and vitamin E or at least soy. Is that combination okay when taking arimidex or for those taking tamoxifen? Does anyone have a recommendation as I have checked both Walmart and Costco.

    Thanks

    Hu

  • sm627
    sm627 Member Posts: 298
    edited June 2018

    Hi Everyone,

    I hope this week is getting better for all of us and the SE are not to bad. TaRenee I am so sorry you have been going through such a rough patch. Hope things start to improve soon. Glad that your plays turned out well. I hope you can enjoy your summer vacation from the children at some point soon. Wishing you well and sending you good thoughts.

    How are you all doing so far this week?

    I went to see my primary doc last week and she said that because I am taking Tamoxifen I need to get a bone density test. Is anyone else getting those too? My MO didn't mention anything about it to me I was told that a needed to get pelvic exams. Now I am curious What other tests have your MO or PCP recommended you have done while taking Tamoxifen?

    Sending good thoughts and Hugs to all,

    Sara

  • PrincessButtercup
    PrincessButtercup Member Posts: 200
    edited June 2018

    Hi Sara,

    The bone density test was the only test that I needed to have before starting tamoxifen. It was easy. Good luck with your tamoxifen!

    Buttercup

  • vampeyes
    vampeyes Member Posts: 1,227
    edited June 2018

    Hi Sara,

    I didn't have any tests done for starting tamoxifen. I am just suppose to report to my GP if I have any unusual bleeding or SEs I can't tolerate.

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