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Topic: Tamoxifen withdrawal symptoms

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: Jun 8, 2009 03:07PM

alessandra wrote:

I`m 38 years old and I have been on Tamoxifen for 5 years.Now has been a week without it and I`m not feeling too good.Does anyone know about withdrawal symptoms?

Dx 12/15/2004, DCIS, 3cm, Stage IIB, 4/22 nodes, ER+/PR-
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Jun 6, 2010 12:15PM sjp616 wrote:

Hi Alessandra,

I took Tamoxifen for 5 years and just stopped, yesterday was my first day without it.  I've also been wondering about withdrawal symptoms. I asked my Oncologist and he said there aren't any.  However, I've read that some women experienced an increase in hot flashes and weight gain, yikes!!  I was diagnosed with stage II breast cancer in 2004.  My chemo started in November, Tamoxifen started in March 2005.  Mine was also Estrogen positive which my doctor had told me is the one that tends to "behave", as he put it.   

When you say you're not feeling too well, what are your symptoms?  I had issues with depression after 3 years of taking it though not sure if that is the cause. I'd heard that depression is one of the side effects of Tamoxifen.  I've been taking a very low dose anti depressant since then. I still get bouts of depression now and then but they don't last more than a few hours and I can control them rather than them controlling me.  I elected to stay on the low dose and deal with it rather than increasing the dose.  Have you experienced any depression symptoms while on it or after?  

I have noticed slight bouts of feeling blue for the past 2 days so I'm wondering if my body will be going through this for a while.  Also, will I eventually not need the anit depressants anymore.  Beyond this though, I haven't noticed anything else. 

I hope my info helps.  I'd love to hear back from you if you have the time.

Thanks,

Susan Laughing

P.S.  We're FINISHED with our treatments, YAY!!!  And congratulations!!!!!

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Jul 6, 2010 07:53PM ababybaby wrote:

I've been off a week now too and got incredibly thirsty last night. Can't find much info about withdrawal online; possible effects I did find included emotional lability, weight gain and hot flashes.

hormones!  

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Jul 7, 2010 05:16AM Musical wrote:

I temporarily stopped for 2 weeks for the sake of surgery and have just restarted. Ive only been on it for 5 months or so.  I didnt really feel that there were any withdrawal symptoms.

Musical

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Jul 7, 2010 08:15AM Member_of_the_Club wrote:

I stopped in May.  No withdrawal.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jul 7, 2010 11:19AM dianna2 wrote:

Hi Alessandra,

I too just stopped taking Tamoxifen (July 1st to be exact), and I'm curious to your side affects. What exactly are your symptoms?  I was due for my period on Monday & got it on Saturday & it was a little heavier than it's been.  I'm also getting a lot of cramps.  At first I thought it was my period, but now it's over & I think it's actually gas pains.  I'm not sure it either are due to Tamoxifen withdrawals or not.  I was wondering if you have the same symptoms.

Thanks & good luck.  

Dx 6/16/2010, IDC, 2cm, Stage I, ER+
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Jul 7, 2010 11:35AM awb wrote:

I took it for 5 years and didn't notice any difference at all when I stopped taking it. I've never heard of any withdrawal issues with tamox.

Anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Aug 1, 2010 12:27PM Nattacia wrote:

I'm not sure of your situation, but if you're having bleeding after Tamoxifen and you still have a uterus, consider talking to your doctors. Tamoxifen can to cause uterine cancer. I have found that much out from the internet.

Dx 7/12/2007, ILC, <1cm, Stage I, 0/3 nodes, ER+
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Mar 3, 2014 09:07AM princessajf wrote:

I stopped taking tamoxifen because my body couldn't tolerate it after 3 months. I'm experiencing the same thing. Haven't had a period this heavy since my teens. My joints also hurt and I'm very irritable. Ugh. 

Dx 7/29/2013, ILC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 10/1/2013
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Jan 7, 2016 03:16PM 10yearsofTamoxifen wrote:

I have finished 10 years of Tamoxifen in August. I also had some pretty severe joint pain, but it lasted only a few months. I'm a nurse, so I am usually on my feet for most of my 12 hour shift. But I found that keeping moving actually helped. The pain was worse on my days off when my activity level was down to that of a normal human being. My advice is to get outside and take leisurely strolls, it helps.

Now, 4months after stopping, I am experiencing bouts of deep sadness. My oncologist assures me that this is just another little bump in the road and is most likely Tamoxifen withdrawal. How long will this last? And what else can I look forward to? Since I am one of the first patients to take Tamoxifen for ten years, no one has any answers. So maybe I'll cry all day 2 times this week and maybe just once next week for no reason, but I will celebrate 10 years as a survivor EVERYDAY! ( and at least I'm not vomiting everyday 😂)

WE DID IT!


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Jan 7, 2016 10:41PM farmerlucy wrote:

Congratulations on finishing 10 years! That is quite an accomplishment. I switched to Femara for seven months but did not notice any SE of stopping Tamoxifen. I hope things settle out for you soon. I get SAAD every winter so I have to make sure I get enough sunlight. Take care! Jill

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/20/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/10/2012 Lymph node removal: Sentinel Surgery 7/21/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/13/2015 Prophylactic ovary removal
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Mar 20, 2016 06:37PM PaulaAmy wrote:

Please accept my congratulations for being on Tamoxifen for 10 years, I am quite astounded by your endurance. I have had to go off it twice as it turned me into a homicidal maniac so am currently only on Zometa, waiting for my oncologist to put me on something else.

I am so happy for you and wish you a long healthy and happy life.

Warm wishes

Paula xxx

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Mar 20, 2016 06:39PM PaulaAmy wrote:

Please accept my congratulations for being on Tamoxifen for 10 years, I am quite astounded by your endurance. I have had to go off it twice as it turned me into a homicidal maniac so am currently only on Zometa, waiting for my oncologist to put me on something else.

I am so happy for you and wish you a long healthy and happy life.

Warm wishes

Paula xxx

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Apr 2, 2016 05:29PM cascader wrote:

A few days ago I just went off Tamoxifen after 6 1/2 years. My uterine lining has increased in thickness to 11mm so my onc says that Tamox is now more of a liability rather than a benefit. She did not switch me to an AI. I am 58 yrs old. Today I am feeling just not right , almost flu like, so came here to see if this was normal. My onc also said I would lose about 5-8 pounds by going off, but I have read elsewhere about weight gain. Hoping my onc is right! Will keep this as a favorite topic so I can follow along. Have a good weekend!

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Apr 3, 2016 08:40AM dtad wrote:

cascader...Five years is a long time to be on any drug and withdrawals symptoms are definitely possible. Makes me mad that any doc would say otherwise. So tired of docs minimizing our treatment side effects. We all know to well how real they can be!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 26, 2017 02:44AM pearlcap wrote:

After taking Tamoxifen for 6 weeks shy of five years, I quit Tamoxifen. After quitting Tamoxifen, I still have hot flushes here and there for about the first 1.5 month. After a few weeks, I noticed I felt a lot more energy. It's been night and day for me: I used to feel really exhausted around a certain time of the day and suddenly I'm fine now. It's been about three months since I quit, and my periods are now more regular but heavier; my weight is about the same although I've exercised a bit less because I have an injury; my hair is still thin but there hasn't been enough time to see what the new growth will be like; I continue to experience vision problems which my eye doctor figured out was related to my Tamoxifen through a number of special eye tests; and my breasts are tender, swollen and hurts to be touched (I'm dreading my upcoming mammogram). The big bonus is that I have all this energy, which is why I am typing this at 2:41 am--it's a good thing. I'll write back when there are more changes. I wish everyone well!

Dx 8/1/2010, DCIS, Stage 0, 0/0 nodes
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Sep 11, 2017 12:06AM Hildab wrote:

Pearlcap U R so funny! U inspired me to write my breast cancer story.

10years Tamoxifen lady: Congratulations!!!

I was diagnosed with breast cancer in New Year's Eve (2013) In 2014 I had a lumpectomy, radiation a 10 years on medications recommendation. Started with anastrozole but by the 6 month I couldn't walk. Bone pain was awful. Started tamoxifen plus venlafaxine for hot flashes and SE. So far: I have ended up in the ER 2 times waking up in the middle of the night without air in my lungs and my heart pounding so fast that I thought I was having a heart attack. I keep telling doctors that I was suspicious that my medicines were the culprit but no they kept sending me to cardiologists. Grrrrr 😡 $$$$ last night ER visit was it, I'm done with PUTO TAMOXIFEN. I'm tired of feeling sick. I Just Emailed my oncologist to please switch to another Breast cancer med if any. For now, I'm Hoping for pleasant withdrawals with this Tamoxifen and Will keep u posted if my memory allows me. I'm afraid Its gone already with these meds. Thinking of natural route soon. God bless u all.

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Apr 22, 2018 08:58PM lka wrote:

so I was on Tamoxifen for 11 years and in November 2017, I finally stopped taking it. I was sick of being tired all the time, bone and joint pain, depression, and the neuropathy. Actually, I was just sick of focusing on being sick. I had a mastectomy on right side in 2006. Diagnosed stage 3. Did chemo and herceptin. And had a hysterectomy except for the removal of one ovary. Nothing much has changed in the six months since I stopped. I still have night sweats, joint pain, etc., but that's life and I'm used to it. What is different over the last few weeks I've been having horrible headaches and breast pain on my non effected side? Anyone else experience this? I'm not sure if it's just hormonal, menopausal, or something I need to worry about. I'm 46.

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Apr 23, 2018 12:45AM Moderators wrote:

Hi Ika! Welcome to BCO! This thread is a bit older, but we have a very active thread on Tamoxifen that might be of interest to you: https://community.breastcancer.org/forum/78/topics...

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 23, 2018 09:00AM lala1 wrote:

lka--I've been off Tamoxifen for a couple of months now and do have an occasional headache but I'm not sure that's not related to all the pollen in the air. I don't normally have allergies but I know Tamoxifen can cause lots of weird things. I'm struggling more with increased vaginal discharge which I really need to have checked. I'd probably call the doctor and let them know about the headaches and see what they think.

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/12/2012 Mastectomy: Left Hormonal Therapy 1/31/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/25/2013 Reconstruction (left): Silicone implant Surgery 6/24/2014 Reconstruction (left): Nipple reconstruction Surgery 1/19/2015 Prophylactic ovary removal
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Apr 23, 2018 09:09AM Sable wrote:

Congrats to each of you for reaching this exciting point in your treatment! (I do realize this is an older thread.... looking for help) I just reached my ten year mark from cancer last week yay! I will be hitting my 10 year mark with tamoxifen in a few months. Just looking to see what others experience has been like coming off of it. My periods never stopped the entire time I was on it. Doc said my body was stubborn. And I have had depression throughout, along with hot flashes, weight gain etc. Hoping that maybe my hair will come back a little once I am off as well. :)

Jen * With all these hot flashes... I'M the reason for global warming* Dx 3/11/2008, IDC, 3cm, Grade 3, 1/11 nodes, ER+, HER2+
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Apr 28, 2018 07:50AM AnnN wrote:

Ika, I've been wondering about possible withdrawal symptoms. I'm a 7 year tamoxifen user, 60 yrs old and have been experiencing increased joint pain again. I am also a bit upset about my continually thinning hair. Don't get me wrong, l am thankful to be cancer free, but wonder if 7 yrs is enough. I am considering skipping one of my two 10mg tablets every other day for a month, the taking 10mgs a day for a couple of months. I will discuss this with my oncologist, but don't have much hope of getting his blessing to go against protocol. Still he always asks about side effects.

I hope to hear from others that have stopped tamoxifen or are questioning dosage.

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Apr 30, 2018 07:31PM NormaJean65 wrote:

AnnN......please go to the Tamoxifen list. I just posted that you might want to read. Actually, 2 posts together. Memory a tad bit slow. :-)

Norma Jean Dx 6/29/2010, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/6 nodes, ER+/PR-, HER2+ Surgery 7/18/2010 Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy 8/25/2010 Herceptin (trastuzumab) Chemotherapy 8/25/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 8/25/2010 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 12, 2019 08:28PM - edited May 12, 2019 08:28PM by Abbey11

I know this is an older post, but I'd love to know if anyone out there has any withdrawal symptoms after stopping tamoxifen? I stopped taking it a month ago and am having some hip pain. I was blaming it on my saggy sofa, but I've been sitting on the sofa for years! I've just noticed the hip pain for the past couple of weeks. Anyone else have this? Thanks!

Diagnosed age 44 with BL BC Sept. 08; right side 5mm, left side 1cm. BL mast. Oct. 08, expanders, exchange to silicone implants Feb 09. Completed 10 years of tamoxifen April '19. Dx 10/2/2008, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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May 13, 2019 02:03PM - edited May 13, 2019 02:22PM by nem126

I stopped 2 weeks ago and I've been having some weird skin changes- eczema on my face, which I've never had before. I'm also on day 38 of my cycle and have yet to get my period. They were a little irregular when I was on tamoxifen, but it's never been this late. Can't quite figure it out because I assumed the opposite would happen.

Diagnosed at 32. Life is weird! Dx 12/6/2016, ILC/IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/11/2017 Lumpectomy: Left, Right; Lymph node removal: Sentinel Radiation Therapy 2/28/2017 Whole-breast: Breast, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 13, 2019 03:33PM lala1 wrote:

Abbey11--I had crazy stuff going on when I finished my 5 years! All my SEs that I had gotten to manageable levels came back with a vengence for about 2 months then settled back down and eventually dissipated at about 9 months. It was like my body was determined to hang on to every last speck of that crap as long as it could. Take a tylenol here and there for a bit and see if it doesn't settle back down.

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/12/2012 Mastectomy: Left Hormonal Therapy 1/31/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/25/2013 Reconstruction (left): Silicone implant Surgery 6/24/2014 Reconstruction (left): Nipple reconstruction Surgery 1/19/2015 Prophylactic ovary removal
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May 23, 2019 11:24AM kkjenkins wrote:

I was not able to take any of the inhibitors including tamoxifen. Tamoxifen gave me a deeper depression with suicidal thoughts. I realize what i was going through and quickly talked to my oncologist. My last resort was to do the faslodex injection and that gave neuropathy in my feet. i have decide to stop all of the medication.


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Sep 2, 2019 10:41AM mofend wrote:

Hello! I, too, just stopped taking Tamoxifen after nine plus years. Been off of it for two weeks. Does anyone else have experience with stopping after so long? I have been feeling slightly disoriented, irritable and just not myself. Any thoughts? Thanks for any input.

Mo Dx 11/27/2009, IDC, 1cm, Stage IIA, Grade 3, 1/12 nodes, ER+/PR+, HER2+
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Sep 6, 2019 10:47AM lala1 wrote:

mofend--that's exactly how I felt for a couple of months after stopping. It was all the same symptoms I had about a year into doing it. It's like you have to go through the reverse. But I will say after a couple of months the nausea and dizziness went away and after about 7 or 8 months the weight started coming off again. I figure that since it's something that helps you even years after stopping that it probably takes a long time to leave your body. It took a couple of months for the muscle and joint pain to stop too. So give it a chance. You took it for twice as long as me so it may take a little longer for you to feel better.

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/12/2012 Mastectomy: Left Hormonal Therapy 1/31/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/25/2013 Reconstruction (left): Silicone implant Surgery 6/24/2014 Reconstruction (left): Nipple reconstruction Surgery 1/19/2015 Prophylactic ovary removal
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Dec 9, 2019 10:09PM margodae wrote:

I know this is an older thread, but thought I'd add to it. I reached then 10 year mark on Tamoxifen early November. Then, I began to ween myself off and took my last pill one week ago. Three days after I took my last pill the skin on my finger tips began to peel or slough off. It began with one finger and over the next few days, the skin on my other fingers have begun to do the same thing. I cannot think of any other reason for this, other than quitting Tamoxifen and the changes my body is now going thru. I contacted my dermatologist and will also contact my oncology nurse.

Has anyone had a similar experience, coming off of Tamoxifen?

Dx 9/11/2009, IDC, 1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2+
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Dec 12, 2019 02:19PM nem126 wrote:

margodae- holy crap! I have not had that side effect, though I did have some weird, more minor stuff with my skin when I first came off of it. I hope you get an answer and a solution soon. Let us know how it goes!

Diagnosed at 32. Life is weird! Dx 12/6/2016, ILC/IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/11/2017 Lumpectomy: Left, Right; Lymph node removal: Sentinel Radiation Therapy 2/28/2017 Whole-breast: Breast, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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