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Topic: Looking for anyone stopping Tamoxifen after 5-10 years?

Forum: Hormonal Therapy - Before, During, and After —

This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: May 21, 2021 11:27AM

Lezza13 wrote:

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!

Dx 12/30/2011, IDC, <1cm, Stage IIA, Grade 2, 2/23 nodes, ER+/PR+, HER2- Surgery 2/27/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right
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Jun 9, 2021 02:15PM Gardengirl72 wrote:

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

Dx 1/2016, LCIS, Right, ER+ Surgery 1/20/2016 Hormonal Therapy 2/22/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 18, 2021 08:02PM momwriter wrote:

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.

Dx 9/2012, IDC, Stage IIB, 3 cm, Grade 3, micromets in 3/7 nodes, ER+,PR+,HER+, Affinity trial Surgery 10/19/2012 Mastectomy: Left Surgery 11/5/2012 Lymph node removal: Left, Underarm/Axillary Chemotherapy 12/3/2012 Adriamycin (doxorubicin), Taxol (paclitaxel) Targeted Therapy 1/22/2013 Herceptin (trastuzumab) Radiation Therapy 5/20/2013 Hormonal Therapy 6/15/2013
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Jun 21, 2021 11:05PM StaceySue2U wrote:

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.

Age 46 at diagnosis - the babies in my avatar are my two adorable granddaughters, Azalea and Violet :) The lights of my life. Dx 1/28/2016, IDC, Right, 3cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/25/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 3/22/2016 Femara (letrozole) Surgery 11/2/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 23, 2021 02:47PM chickadee521 wrote:

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

Dx 4/15/2011, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jun 24, 2021 12:16PM operalass wrote:

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...

Dx 4/3/2009, ILC, Left, 6cm+, Stage IIIA, Grade 1, 2/11 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 5/21/2009 AC + T (Taxol) Surgery 9/28/2009 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 11/8/2009 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/9/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 9, 2021 05:05PM carin16 wrote:

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!!

Dx 5/26/2016, IDC: Tubular, Right, 1cm, Stage IA, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 6/30/2016 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 8/16/2016 3DCRT: Breast Hormonal Therapy 9/30/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 9, 2021 05:16PM bcincolorado wrote:

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.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/6/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/14/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/29/2016 Femara (letrozole)
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Jul 9, 2021 05:43PM voraciousreader wrote:

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.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jul 18, 2021 09:27PM Wholenewworld wrote:

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.
Dx 2/2016, IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jul 18, 2021 10:48PM voraciousreader wrote:

whole…you can request the bci test …


https://www.breastcancerindex.com/resources-providers?gclid=CjwKCAjwos-HBhB3EiwAe4xM9_oH_Cvd8H_8XFFFrfKn0My4HbrCtcnaREAYM-kuhqZyyRG3Vb-HBxoCX4YQAvD_BwE&gclsrc=aw.ds

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jul 20, 2021 04:56PM molly1976 wrote:

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.

Dx 2/11/2015, IDC, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR-, HER2+ Surgery 2/18/2015 Lumpectomy: Right Targeted Therapy 3/10/2015 Herceptin (trastuzumab) Chemotherapy 3/10/2015 Taxol (paclitaxel)
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Jul 29, 2021 01:59PM ducky113 wrote:

Just finished my 10-year relationship with Tamoxifen. Stopped taking it today...will see how this goes!!?!?!?!!

Dx 5/2011, IDC, Stage IIB, Grade 3, 1/19 nodes, ER+/PR+, HER2+ Surgery 6/1/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/30/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Targeted Therapy 8/18/2011 Herceptin (trastuzumab) Radiation Therapy 11/3/2011 Breast, Lymph nodes Hormonal Therapy 3/23/2012 Surgery 4/8/2013 Prophylactic ovary removal
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Sep 12, 2021 10:19AM tatasister10 wrote:

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.

STILL I RISE! Dx 10/31/2011, IDC, Stage I, Grade 3, 0/7 nodes, ER+/PR+, HER2+ Targeted Therapy 12/27/2011 Herceptin (trastuzumab) Chemotherapy 12/27/2011 Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/30/2012
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Sep 21, 2021 05:41PM Lafayette230 wrote:

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




Dx 4/17/2014, IDC, <1cm, Stage IB, Grade 3, ER+/PR+, HER2-

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