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Looking for anyone stopping Tamoxifen after 5-10 years?

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lezza13
lezza13 Member Posts: 579

I am finally finished with Tamoxifen after 9 years. I wanted to reach out to others to see how they are doing weaning off the drug. The hot flashes, which was my main side effect seemed to have slowed down so I don''t have them as often. Wondering how anyone else was doing. It's been a long haul. Anyone who is still on Tami, hang in there!

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  • Gardengirl72
    Gardengirl72 Member Posts: 3
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    hi!

    I just stopped taking Tamoxifen after a 5 year stint. I was on 20mg the first 3 years and bumped down to 10mg for the final 2. I’ve been off for 2 months and in the last few weeks I’ve been having tons of anxiety and panic attacks. Granted lots of life changes going on (Covid-19, dog passing away etc). But I’ve been able to manage them well in the past and now they feel out of control again. I can’t find anywhere the withdrawal side effects so I need to know if this is common. I stopped seeing my oncologist because I’ve had 6 “clean” mammograms and she says we’re done. Anyone else out there having withdrawals stopping?

    SickTired

  • momwriter
    momwriter Member Posts: 276
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    Hi,

    My MO today told me I can come off of Tam after 8 years. The choice was somewhat up to me. I decided that I want to be able to see how I'm without tamoxifen and see if some of my issues that I manage are due to tamoxifen, or just menopausal. I'm 56, dx at 47 premenopausal. So I'm going to try this for at least a month and see if there are any changes. I'm interested in hearing how others are faring. I am exercising a lot right now and don't want this stopping to interfere with my routine.

  • StaceySue2U
    StaceySue2U Member Posts: 83
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    I stopped taking tamoxifen in March and since then I've had a lot of joint pain, fatigue, and weakness. Over the past week or two the fatigue and weakness have improved but my finger joints are still so stiff and sore. I'm starting to wonder if it's rheumatoid arthritis.

  • chickadee521
    chickadee521 Member Posts: 423
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    I just asked my doctor today if I could stop. About to hit the 10 yr mark and want to see if stopping effects my blood work and yearly CT scan when I have my appointment in November

  • operalass
    operalass Member Posts: 3
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    Hello, I stopped this week after 10 years, with one year off for fertility reasons (which didn't happen anyway). I took it from January 2010-June 2017 and then June 2018-June 2021. I've noticed a lot of hot flashes and irregular cycles this year which I mostly attributed to pandemic stress and peri-menopause (I'm 43). We'll see if tamoxifen withdrawal affects that too...

  • carin16
    carin16 Member Posts: 1
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    Hi, I stopped Tamoxifen after 5 years this past February. Thankfully didn’t notice any withdrawal symptoms, although in April I started having severe breast pain in my non-cancer side. At first I figured it was from the uptake in estrogen in my breast since stopping Tamox, and my radiated breast didn’t have the pain due to the radiation. I have had a hysterectomy but still have my ovaries. The pain and swelling have continued since April and are not letting up.

    Have had a mammo, ultrasound and both were clear. Anyone else have any severe breast pain and swelling since coming off tamoxifen?

    Thanks!!

  • bcincolorado
    bcincolorado Member Posts: 4,709
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    I was on Tamox for 5 and then went to Femara after that for close to 5. Stopped short of the 5 at the direction of MO due to SE of on my bones from the AI and time since my initial surgery. Best wishes.

  • voraciousreader
    voraciousreader Member Posts: 3,696
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    8 years. Discontinued two years ago. No difference whatsoever. When I started, I was placed in menopause with Lupron injections. My body was, and still is,in a state of simmer. Had to change my entire wardrobe. Layering is my best friend. Ceiling fan and air conditioning too. Also where Frogg Toggs around my neck when I MUST venture into the heat. Other than that…I feel good…on most days. Also had numerous ortho surgeries during the last dozen or TWO years. Do everything I need to do to keep vertical. Life…is good.

  • Wholenewworld
    Wholenewworld Member Posts: 9
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    I just reached 5 years and had the conversation with my Onc. Unfortunately there was no real data on how 5 yrs vs 10 impacts the numbers. I understand 10 years is “the new standard" though. Everyone is different depending on your onco type score/recurrence % and peace of mind vs side effects. In my case it's low so another 5 yrs may be just 1-2% less, which is not enough for me to stay on it. I will be stopping but following up with my doctor a few months later. If I change my mind and feel more secure on it vs the side effects I can always go back on it so that’s comforting.
  • molly1976
    molly1976 Member Posts: 78
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    I stopped after 5 years after the BCI Test indicated it was the best option for me. I didn’t notice any changes except my period came back for the first time since chemo and is alllllll over the place. The cycle length varies but it’s usually really long and will sometimes stop for a day or two and then start up again. It sucks! I’m 44.

  • ducky113
    ducky113 Member Posts: 8
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    Just finished my 10-year relationship with Tamoxifen. Stopped taking it today...will see how this goes!!?!?!?!!

  • tatasister10
    tatasister10 Member Posts: 42
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    I just stopped after 10 years. 25 at diagnosis. Not much change. I didn't have a lot of side effects anyway. We shall see.

  • Lafayette230
    Lafayette230 Member Posts: 2
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    Hello ladies,

    I've been on Tamoxifen seven years and have had some pretty persistent side effects (fatigue, ached, weight gain, constipation). It's been 14 months since my last period and I am in the thick of proper menopause now which has thrown me for a loop and added insomnia to the mix. I have some retinopathy that my onc thinks may be because of the Tamox and he has suggested that I come off at seven years.

    I've wanted off since month one on this drug but today searched for withdrawal effects and read pages and pages of reports of women finding withdrawal even tougher than the tamoxifen itself. For those of you who have come off this year, how are you feeling?

    Menopause on top of the Tamoxifen side effects plus the stress of the pandemic nearly killed me last year. If withdrawal is going to make me feel even worse I don't know if I'm game to come off right now. Would love some advice.


    K




  • ramols
    ramols Member Posts: 310
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    Hello All - I was on the 10 year plan for tamoxifen but just stopped about one month ago, after having made it through 8 years and 8 months on the meds. I'm wondering if others who have gone through withdrawal have found themselves a bit more emotional and prone to weepiness than normal? Is this a withdrawal side effect? There is little to no actual research information online about this - not surprising... so relying on the good people here for some current anecdotal info. Thank you!

  • pi-xi
    pi-xi Member Posts: 177
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    Hi ramols.

    I stopped just over a month ago. I was on it for five years. I felt fantastic coming off tamoxifen! Had some medical procedures which knocked me back a little, but for the most part I feel more joyful and more sane. I did have a short bout of being quick to anger but that may have just been the stress of surgery for skin cancer 🙄 and a colonoscopy. It may also have been some PMS. I was still having my period before a hysterectomy two years ago and my heart rate still shows a monthly cycle, so I think I'm still pre-menopausal. PMS really could be the culprit.

  • ramols
    ramols Member Posts: 310
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    Thanks Pi-Xi - so glad for you (and for me) to hear you have been feeling great! I'm hopeful that I will be feeling better than ever soon! :)

  • lezza13
    lezza13 Member Posts: 579
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    Congrats to everyone for stopping Tamoxiifen. I apologize for not addressing everyone indiiduallly. It's great to hear of the positives for the stopping that pill. I find I have more energy and have even lost weight which I found difficult while on that drug,

    Lafayette23 I honestly believe you will feel better coming off. The first week is odd but after that it is amazing how the hot flashes are not less and the positive energry. I have benn in chemo induced menopause for year and am happy to be off this drug. Please keep thinking of the positives.

  • jcsduke5512
    jcsduke5512 Member Posts: 1
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    I have been on tamoxifen for 5 years and my oncologist just told me I need to stay on it for 5 more. It has been a struggle as I have experienced every side effect of this drug. Needless to say, I hate it. I have had to see a cardiologist due to chest pain, gynecologist for vaginal bleeding (and I had a hysterectomy 20 years ago), not to mention joint/muscle pain, fatigue, depression, etc. Every visit I discuss these side effects, and finally last year, my Dr. said I can take it for 3 months and then take a one month break. I stopped it for a week and the withdrawal is worse than when I take it regarding joint and muscle pain and fatigue. I have started back on it with the hopes that it will settle back down and will not take another break. I do not know if I can tolerate this for another 5 years. I would like to offer this tip for anyone suffering from hot flashes with tamoxifen. Finally, after 5 years, I saw a new PA who told me to take magnesium for the hot flashes. This has been a wonder drug and made a major difference for me in helping with these hot flashes. They have almost stopped completely! Hopefully it will help someone out there suffering!

  • lezza13
    lezza13 Member Posts: 579
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    Jcsduke5512

    Glad magnesium is working for you with your hot flashes. I was told by my onc I only had to do 9 years. I hope you can hang in there. I use Arnica on my joints and that seems to help. I am on Cymbalta but that is my choice to end anxiety not depressiion, I wish you all the best