Is there any one who felt good on Tamoxifen

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Dhanno
Dhanno Member Posts: 104

Hello to everyone

I will be starting Tamoxifen from tomorrow .Are there any ladies who felt alright or even good after starting Tamoxifen . Every thread is full of horror stories about this stuff .I know it protects us from BC but does it do anything else positive to the body that makes you feel that it is not so bad after all .


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  • Fiaranch1
    Fiaranch1 Member Posts: 328
    edited September 2018

    Actually I felt great and even lost weight on tamoxifen I was on it for 2 years and then got placed on Arimidex which honestly has been hell for me, but I push through . Not everyone reacts the same to these drugs . Good luck and I am sorry you are in this "club" with the rest of us .

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

    Fiaranch1 - can you not switch back to Tamoxifen?


  • ksusan
    ksusan Member Posts: 4,505
    edited September 2018

    People who do well don't post about it. This is true for almost any physical/Medical issue.

    After 3 years on Tamoxifen, I still have some joint sensitivity. That's about it for side effects. Getting there required finding the right generic and learning how to treat my knees etc. when they get sore.

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2018

    I felt fine on tamoxifen. My second cousin was being treated with 5x the dosage of Tamo and he didn't have any side effects from the Tamo. (He had brain cancer).

  • lg10
    lg10 Member Posts: 71
    edited September 2018

    I've been on Tamoxifen for a little over a month now and feel completely fine. I agree with ksusan that most people who don't do well are the ones that post. I think there are a lot more of us out there who handle it well.

  • gb2115
    gb2115 Member Posts: 1,894
    edited September 2018

    I didn't start getting side effects from Tamoxifen until a couple of months after I started. So far it's mostly been hot flashes, dry mouth (and associated gum problems) and occasional nausea. I manage it all and it's ok. I am about 18-19 months into taking it.

  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited September 2018
    At the moment I am doing pretty well on tamoxifen! There are side effects including dry eye, dry mouth, some vaginal atrophy, hair loss (and muscle cramps if I go off magnesium)...BUT the brutal fatigue and brain fog lifted recently! Fingers crossed it lasts. I'm wondering if it was pushing my diet further toward only plant-based. Whatever it is, I am sticking with it.
  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited September 2018

    I had no problems on tamoxifen. I took it for 3 years, but my pap smears started coming up weird (don't know if it was from tamoxifen or not) ended up having biopsies and then a D & C - nothing cancerous, but my oncologist felt it best to be taken off. Now I'm on letrozole and have not really had issues with that either except my hair is thinning - really thinning. I just keep buying more hair products hoping it will help my hair look thicker.

    Nancy

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited September 2018

    Doing Ahhh mazing on Tamoxifen. I don't know why, but I feel better on Tamoxifen. I had to go off while taking an antibiotic, and honestly I could not wait to go back on it. I am sure that I am the exception.

  • PurpleCat
    PurpleCat Member Posts: 358
    edited September 2018

    Signing on so I can find the thread back later. I've been told I'll need it after lumpectomy and am hoping to report feeling just fine.

  • Bagsharon
    Bagsharon Member Posts: 200
    edited September 2018

    That Tamoxifen thread would scare the pants off anybody. I do have hot flashes but no other side effects. I started out on Arimidex which came with hot flashes AND joint pain so dealing with just hot flashes is nothing.

  • Falconer
    Falconer Member Posts: 1,192
    edited September 2018

    same here- Tamoxifen is a walk in the park for me compared with the AIs and OS.

  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited September 2018

    I started Tamoxifen one week ago and have been so frightened to start it reading all the horror stories on here. Yesterday I realized that estrogen and progesterone are what grew the cancer in me and this drug is what will stop it so I'm going to take each pill believing that it's good for me. That doesn't mean I won't be open eyed and address any SEs if they arise. This forum will be a great resource for that. But I've spent 5 months afraid: first of double mastectomies, then chemo, then exchange surgery..now this. Nice to hear success stories.

  • star2017
    star2017 Member Posts: 827
    edited September 2018

    it’s been four months and I’m not noticing side effects anymore.



  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited September 2018

    I felt fine on Tamoxifen. No SEs at all. Arimidex has been a different story

  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited November 2018

    Two months so far and I feel fine.

  • Tempy
    Tempy Member Posts: 101
    edited November 2018

    I've been on it for three years now. Main issue that I've had is muscle cramps that will wake me out of a deep sleep screaming in pain. My docs have checked my magnesium, potassium, etc and I've been on magnesium replacement for years also and I have good times and bad. The cramps will wander throughout my body (I had the start of a bad cramp on my left side earlier today) although they tend to spend more time in my legs and feet. Some of the time I can feel when they're starting and have medication I can take that helps reduce the severity of them but even that doesn't help some days. I haven't noticed much as far as mood swings, etc now that I've been on it for a while so that's been good.

  • Lucy55
    Lucy55 Member Posts: 3,044
    edited November 2018

    I've been taking it over 4 years ..I have no side effects at all ...

  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2018

    I took it for 4 years. I had joint pain periodically and a lack of concentration every now and then but other than that pretty manageable. I started out with Arimidex and had no issues with it but my sister did. My MO switched me to Tamoxifen after 1 yearbecause Arimidex attacks the bones and I had osteopenia at the time.

    Luckily for me my MO said I didn’t have to take it after my 5 years was up. Btw I’m 7 years out last August.

    Diane

  • Palesa2018
    Palesa2018 Member Posts: 140
    edited November 2018

    wonderful to hear from you all regarding good experiences with Tamoxifen. I've been on it for 3 weeks now. So far so good.

  • Falconer
    Falconer Member Posts: 1,192
    edited November 2018

    I feel a heck of a lot better than I did on Lupron and am AI. Thanks for asking!

  • SharonDe
    SharonDe Member Posts: 222
    edited November 2018

    I suffered from terrible joint pain while on Arimidex. My original oncologist ignored my concerns for 2.5 years. Once I found a new oncologist, she listened to me and switched me to Letrazole (after being off Arimidex for several weeks and the joint pain going away). While better, the joint pain came back on Letrazole. It was so bad I literally could not get myself out of the bathtub. I was then prescribed tamoxifen, even though I was post menopausal at 64 years old. It’s been about 9 months and I can’t believe the difference. No joint pain. I am able to exercise. And I’ve noticed no other negative side effects.

    My oncologist said that studies have shown a blend of AIs and Tamoxifen are effective, even for post menopausal women. Just wanted to share that Tamoxifen is working for me.

  • DanceSmartly
    DanceSmartly Member Posts: 69
    edited November 2018

    I've been on Tamoxifen for almost 7 months now and would say that I feel good. Definitely struggled the first month, especially the first 2 weeks: headaches, insomnia, electric-like shocks in the treated breast (this SE is apparently rare). The headaches went away after the first 2 weeks, the insomnia improved after the first month and the shocks gradually decreased. Then I experience leg pain / cramps at night for a bit, but started taking Ca/Mg and that resolved those. I have had only 2 hot flashes since starting this drug (apparently I am one of the lucky ones when it comes to this common SE at least)! I still have trouble sleeping every now and then. It's hard to remember what life was like pre-BC, but honestly, I feel really good these days.

  • heyfatlulu
    heyfatlulu Member Posts: 1
    edited November 2018

    Hello everyone,

    It's so encouraging to read these stories! I met with my oncologist yesterday and will be switching from Anastrazole to Tamoxifen because I am in so much pain. My hands hurt first, but now my entire pelvis hurts, along with my knees and the backs of my heels. It's miserable. I am so hoping that the switch to Tamoxifen will be as positive for me as it has been for so many of you.

    *just keep swimming*

    Torii

  • SharonDe
    SharonDe Member Posts: 222
    edited November 2018

    Wishing you the best of luck with your switch to Tamoxifen. Please let us know how you feel after the switch.

  • PebblesV
    PebblesV Member Posts: 658
    edited November 2018

    Hi everyone - I'm also due to start Tamoxifen soon after I get done with radiation treatment but am super nervous about it due to the side effects I've seen others have. So thank you Dhanno for starting this thread!

    I was wondering if those of you who have done well on Tamoxifen could share some of what you did (if anything)? For example, do you take it morning or night? What's your dosage? Did you wait to take it or take it right away as soon as other treatments were done? Do you exercise regularly and does that help? Anything on the nutrition side that helps? Etc...

    Any thoughts or advice to help avoid side effects would be much appreciated.

  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited November 2018

    I have been on it for almost 3 months and notice moodiness if I miss exercising. During the fires it was smokey even in the gym and I missed a whole 5 days in a row and started to get irritable. Only other SE is heat flashes. Otherwise I feel fine so far. BTW I'm losing weight!

  • JennieKeaton
    JennieKeaton Member Posts: 80
    edited November 2018

    Hi Dhanno

    I was on chemo from 2012 until my most recent diagnosis. I had zero effects from it - none at all. It truly was a non-event. Until I started my most recent journey, didn't even know there were those with issues taking it.

    Jennie

  • ktab96
    ktab96 Member Posts: 126
    edited November 2018

    I agree with Falconer. Tamoxifen is much easier then AI's.

  • christina0001
    christina0001 Member Posts: 1,491
    edited November 2018

    It's great to read these positive stories! I quit tamoxifen a few years back because the side effects were getting to me too much. But I just restarted a few days ago. Hoping that the second time is the charm!

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