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Bottle o Tamoxifen

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Comments

  • shelabela
    shelabela Member Posts: 327
    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: 70
    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: 32
    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: 85
    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: 931
    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: 705
    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: 406
    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: 3
    edited June 2018

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

  • Lula73
    Lula73 Member Posts: 705
    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: 161
    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: 70
    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: 471
    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: 161
    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: 471
    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: 523
    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: 705
    edited June 2018

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

  • SLL101984
    SLL101984 Member Posts: 162
    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: 394
    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: 72
    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: 65
    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: 85
    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: 142
    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: 161
    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: 523
    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.

  • capecodgirl
    capecodgirl Member Posts: 93
    edited June 2018

    Hi Sara- I had a bone mineral density test and a pelvic ultrasound prior to starting tamoxifen. My MO said it was to get a baseline for comparison with future tests.

  • shelabela
    shelabela Member Posts: 327
    edited June 2018

    I had a bone density test. Then they requested a pelvic exam and ultra sound for base line

  • beaverntx
    beaverntx Member Posts: 2,962
    edited June 2018

    For me, no bone density test prior to starting Tamoxifen because I'm due to have one this year to monitor my osteopenia (having a 10 year history of osteopenia is a major reason for my postmenopausal person being on Tamoxifen instead of an AI). On the other hand, my pelvic ultrasound showed a thickened endometrium which led to an endometrial biopsy which led to a robotic assisted hysterectomy and bilateral salpingo-oopherectomy last week. After getting the postop path results my gyn surgeon said I made the right decision because there were premalignant changes in my uterus. Finally started the Tamoxifen this week, over two months after finishing radiation and 4 1/2 months post breast surgery.

    Moral to the story: Do get those recommended tests/checkups. I was totally asymptomatic for both the breast cancer (found on an annual mammogram) and the uterine changes.

  • Dizzybee
    Dizzybee Member Posts: 115
    edited June 2018

    shelabela

    I thought there was no need for a bone density test with tamoxifen because it is protective against osteoporosis? I know they do it when you start AIs because they do cause problems with bone density.

    I had the usual blood tests when I started on tamoxifen, cholesterol, thyroid, blood sugar etc. I asked about taking a baby aspirin because of the increased clotting risk, but my GP doesn't advise it. And I have an annual pelvic ultrasound because I've already had endometrial polyps and a thickened uterus. I had biopsies done after a bleed on day three of taking tamoxifen, which scared the hell out of me, I was six or seven years past the menopause so it was treated as an urgent referral. It was horrible waiting for the biopsy results, I was two weeks out of surgery for my BC and waiting to start radiation. So the annual ultrasound is to monitor whether everything is still okay in that department.

  • runor
    runor Member Posts: 1,615
    edited June 2018

    Okay. Not loving this. Two days ago sat on the lawn, with my skirt yoinked up to my knees, and groomed the dog. Now my lower legs, which were exposed to the sun, are covered in that reddish purple mottled rash that is neither a tan nor a sunburn but something ugly and in between and I blame it 100% on that friggin Tamoxifen! This happened last time I dared to expose my calves to the sun - all splotchy and red and weird and the kid even said, Mom, gross. (thanks) I have not looked up photosensitivity as an effect of tamoxifen but will now. Thank god it doesn't happen on my face or arms! Is that because my face and arms are used to sun exposure while my pasty, white legs are not? Either way, it's not like I was out there for hours! I hate being hot and about 15 minutes into grooming the wiggly dog under the broiling sun I said, screw this. So it cannot be blamed on over exposure.

    Today we are under clouds and the mosquitoes are so thick you'd be nuts to go out there with bare anything, so I'm safe from sun discolouration. Ugh.

  • pi-xi
    pi-xi Member Posts: 177
    edited June 2018
    Dizzybee,


    In pre-menopausal women, tamoxifen can cause bone density loss. In post-menopausal women it is protective against bone density loss. I am not sure why.

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