Great news! If you’re the one in eight women diagnosed with breast cancer, and your particular cancer is hormone positive, ‘all you need’ is surgery, maybe a little radiation, and the magical drug tamoxifen. I say this in jest… tamoxifen side effects after breast cancer suck!
Tamoxifen is a drug that blocks estrogen receptors on breast cancer cells, and a large number of people diagnosed with breast cancer are estrogen positive (meaning cancer cells snack on these hormones to grow and exist). My breast cancer was hormone positive and apparently this is the ‘good’ kind. The reason being, doctors know what feeds my particular flavor of cancer and therefore they know how to treat it and what to typically expect.
This daily tablet is given to hormone positive breast cancer patients, for five to ten years after treatment, to lower the risk of the cancer recurring. Tamoxifen isn’t technically called chemotherapy, because it’s an anti-hormone agent that blocks the effect of estrogen and stops the cancer from ‘sticking’, while chemotherapy attacks cancer cells (and every other living cell it reaches). The thought is chemotherapy will kill the bad cells before it kills enough of the good cells that will kill YOU. The estrogen blocker is meant to stop estrogen in my system, and basically throw me into pre-menopause. My doctor warned me about tamoxifen side effects after breast cancer: cervical cancer, blood clots, hot flashes, headaches, weight gain, mood swings, nausea, fatigue, depression… the list is endless. Lovely right? What my doctor didn’t say was that these side effects would change how I look, sleep, think, act and feel.
I’ve been taking this drug for four years and the doctors want me to stay on it for another 1 to 6 years! Soooo in the spirit of doing whatever I can to stay alive, I take a drug that makes me bat-shit crazy 50% of the time. Read why tamoxifen side effects after breast cancer suck!
Each morning I get up and hobble around for the first hour in unbearable pain. I have a sharp pain in the crease where my ankle meets my foot. It’s so weird. I ache all over and my bones ache. It feels like those growing pains from when you were a kid except I don’t grow out of them. I get to endure them until I stop taking this wonder drug.
I don’t remember the last time I slept a full night without medicinal help. I hate to take more medication to counteract the side effect of a medication, but sometimes I am simply exhausted and need to sleep.
Without a sleep aid, if I do sleep it’s in hourly intervals. I typically wake up twice per night soaking wet from hot flashes (we’ll get to that later) and then toss and turn trying to fall back asleep. My eyes are dead tired, my body is dead tired, yet I can’t fall asleep. When I finally do fall asleep, it’s usually an hour or so before I need to wake up and do the morning joint pain hobble to get the boys ready for school.
Taking Tamoxifen is like going through menopause x 100. Tamoxifen stops my body from producing hormones (which remember feed my cancer), and when my body is free of these hormones, consequently I’m in a complete pre-menopausal state.
Except when females typically go through menopause, they are given hormone therapy to counteract this radical change to your hormone levels to provide some sort of stability to your body. BUT I can’t take any sort of hormone replacement therapy in case it feeds my f-ing cancer and it decides to take a tour of my body again. Tamoxifen rage sends me from zero to bat-shit crazy in an instant. It’s like massive mood swings sprinkled with fits of rage. In fact I’m feeling ragey (is that even a word) just writing this and remembering how f-ing unfair this is. My poor family have taken the brunt of this, and the sad part is I know when I’m in my ‘Tamoxifen Rage’ yet can’t control myself. The drug is controlling me. Sometimes I can barely stand myself.
My hot flashes seem to come at the most inopportune times. They are not really flashes of heat… that’s such a myth… in fact I don’t feel hot, instead, the only way I know I’m having one is when I feel droplets of sweat roll from my neck slowly in between my plastic chest area, and around my hairline.
One minute I’m freezing cold, and the next I’m bright red and sweating profusely. It looks super attractive when I’m in Trader Joe’s checking out with the perky cashier, or some other public place. I typically get 2-3 hot flashes per night, wake up drenched and need to get up and grab a towel to wipe off. Which again starts the cycle of sleeplessness.
Maybe you’ve heard of chemo-brain, and lucky me, tamoxifen simulates this! Low estrogen levels tamper with specific cells in your brain. These changes feel like my brain is sitting in a cloud of fog. I’m often forgetful and experience intense changes in my ability to focus, remember information, or just keep track of everyday tasks.
I often ask my kids the same question over and over, which is frustrating for all. After two years of this, they now patiently repeat themselves as many times as needed (for fear of sending me into a tamoxifen rage I think!)
Another upsetting side effect I’ve experienced while taking tamoxifen is weight gain. Tamoxifen is designed to shut down hormones to simulate menopause in my body. Since these hormones are not around to regulate my metabolism, it’s at a grinding halt. This makes it harder to keep weight off. Super cool.
One of the worst side effects of Tamoxifen after breast cancer is I’ve lost that ‘filter’ we typically use on a daily basis. I’ve turned into a crotchety old grandma who says whatever she pleases without thinking how anyone else is going to take it.
My thoughts sometimes blurt out of my mouth without any restraint. The worst part is I know it’s happening, but again am unable to stop since I’m being controlled by my ‘wonder drug.’ It’s like I’m now possessed by tamoxifen.
The drug also raises the risk of blood clots and endometrial cancer. Which means all my other doctors keep a close eye on me for risk of developing cancer. Which is good and bad. Each time I go to my OBGYN I’m given a biopsy of my uterus, and if you’ve ever had one of those, you know it’s along the pain scale of a root canal without anesthesia. Except in your lady parts.
So there you have it. I can’t shut up, regulate my body temperature, lose weight or sleep. And I hurt all over. My family is probably going to disown me due to tamoxifen rages, in which case the hot flashes at night won’t be a problem. My option is to take this wonder drug to stop my cancer from recurring (that also changes my life) or live with a high risk of recurrence of breast cancer.
Thank you breast cancer… the gift that keeps on giving. Thank you Tamoxifen, you freaking ‘wonder drug’… I feel so lucky we get to hang out for the next 1 – 6 years. I’m told your delightful side effects continue to get more intense. I will survive the time we have together, because I don’t really have another option and you don’t scare me. But I can’t guarantee I won’t complain about you in one of my rages and throw you at the wall!
Join my mailing list to receive the latest news and updates from me.
I’m a travel and health writer, digital and brand consultant, breast cancer survivor, and supermom to two active boys! I keep it real and share stories of raising teenage boys, family life after a cancer diagnosis, and family travels around the world! Each story is shared with my dry, and sometimes naughty sense of humor.
Join my mailing list to receive the latest news and updates from me.
8 years cancer free and counting! Maybe my body is finally realizing that we’…
Join my mailing list to receive the latest news and updates from me.
I am a 7 year Breast Cancer Survivor and Counting! It’s been 7…
Join my mailing list to receive the latest news and updates from me.
Barb Tressel-Bangas | 6th Jun 18
AMEN! Thank you for the article! I’ve been on tamoxifen since 2013. I’m sorry you’re going through it too … however, it’s a relief to know I’m not the only one. Best to you & your family!
Samantha | 6th Jun 18
Urgh… sorry you are going through this too… the doctors don’t share the nitty gritty do they?!?! Sending health and love to your family!
Maria | 2nd Jul 18
Thanks! I thought I was going crazy. Sending hugs and love to all those who are going through this wonderful(sarcastic as hell) journey!
Samantha | 2nd Jul 18
Nope not crazy.. it’s just the wonder-drug making us crazy! Lucky us! xx
Amy | 12th Aug 18
I lost my family over this devil drug tamoxifen. I took it for eight years, as my mother inlaw die of secondary breast cancer, hence husband encouraged the drug and yet unable to accept my “tamoxifen rages”. So my family abandon me when I suffered from severe mental health. Life goes on, I stopped taking the drug after my crisis which prompted me to re-evaluate what’s wrong with me. But it WAS NOT ME, the drug took control of my Brain. Enough is enough! I am now medically decease free, ie cancer free – not sure the sever side effects was worth it. But I am now me, I have control over my emotions and behaviour. Was so shocked by the chemical effect it had in my brain. Think and evaluate what’s best for you. The side effects are real…;(
Samantha | 14th Aug 18
Oh Amy. I’m so sorry to hear of your battle with this drug. The side effects are different for everyone, but for me, and it sounds like for you too, they are very real and not fun at all! Stay healthy!
Amy | 11th Nov 18
Thank you for writing this. I am really struggling in life right now. I feel extremely moody and sad, and I lash out and get mad at people very quickly. I have spent the last few months wondering what is wrong with me. You know what’s wrong with me? NOTHING. ITS NOT ME. Its just Ive been on awful Tamoxifen for 5 1/2 years now, and I think this is a side effect that is getting worse and worse. I dont know what to do. I got diagnosed at 31 and my onc is dead set on keeping me on Satan pill for 10 years. I just dont know if I can stay on it. I truly hate being an asshole.
Thank you for letting me vent. I really appreciate you writing this article and sharing your thoughts.
Samantha | 12th Nov 18
Oh Amy… I hear you loud and clear. In fact I asked my oncologist if I could come off of it, and she said the alternative is just too risky for me for recurrence. The worst part is that people expect you to be ‘over’ the cancer thing, and they have no idea the lingering effects and challenges. Hang in there. I feel your pain! XXXX
| 12th Dec 18
I recently was suspended from work may not have a job there after this latest massive mood swing
Samantha | 13th Dec 18
Oh no… so sorry to hear this… Sending you love and well wishes.
| 30th Jan 19
Omg!!! I’ve only been on tamoxifen for 6 days and I’m losing my effing mind. I resisted at first but 5 months after surgery 3 more breast cancer tumors popped up. I feel the effects within about 20 min after taking it and I am shocked at how powerful it is. I am about to quit already and go back to taking DIM and double up my dose.
Thank you for sharing because I just didn’t want to believe I could feel this crazy.
I’m going to go all in with cannabis and fasting and natural treatments because life ain’t worth living like this.
Samantha | 7th Feb 19
urgh, I am so sorry that you also are going through this…. it really is the devil! Sending love and healthy hugs your way! XX
| 8th Mar 19
The only thing I think will help research and resolve the side effects is if everyone who prescribed it had to take it themselves. My suspicion is that this medication ruins 50% of the relationships it touches.
Samantha | 9th Mar 19
Agree… the side effects are devastating and pretty hard to live with, and unless you take this drug you have no idea how severe they are. Hang in there!
| 12th Mar 19
I HATE Tamoxifen! It is a nasty drug I wish I could flush down the toilet and forget! I can’t stand feeling stupid, achy, fat, lethargic, …… Oncologists should really have to take it for a few months. I guess, actually, pharmaceutical reps should have to do the stop pushing it!
Samantha | 13th Mar 19
It really is the devil… I wish there were another option! Stay strong!
| 10th Apr 19
Thank you for helping me get through another lovely, tamoxifen-filled day. It truly helps not to be alone. XO
Samantha | 11th Apr 19
Happy to help! 🙂 . so sorry you too are taking this crazy making drug!
firstname.lastname@example.org | 13th Apr 19
So relatable, I’ve been on tamoxifen since December and I hate it with a vengeance…. Horrendous joint pain which stops me sleeping, hot flushes, fatigue and has made my depression and anxiety return ….. So tempted to stop taking it but fearful of reoccurrence …… And sick of people telling me how well im looking ….. Appearances are deceptive …. I may look fine and have a smile on my face but most of the time I feel like crap …. Hate tamoxifen and hate cancer. ! Xxx
Samantha | 13th Apr 19
I wish there was more discussion around tamoxifen and the horrible side effects… i feel that so many people are suffering in silence… so sorry you are going through this too…
Vivien | 20th Apr 19
Thank you for sharing! Tamoxifen rage is making me hate myself. I tried so hard to control my tamper but I still go crazy! It seems like it is getting worst as time goes on. I feel bad for my kids. I totally agree with you about you know you are on tamoxifen rage but can’t control it. I know I had said hurtful things 😭 I wish there is other choice. I hope my kids still think that I love them even mommy get bat-shit crazy 10 times a day.
Trisha | 21st May 19
Yeah it’s a real thing…and they should do more studies on it and how it affects us emotionally …being sad…mad, irritated and not feeling yourself …knowing this isn’t who you are or want to be and having little control over it .
Samantha | 23rd May 19
Not to mention the weight gain… i would love to have more studies on this ‘miracle drug’….
Andrea | 19th Aug 19
I am on Tamox for a little over a year. Already quit it once, but my Onc frightened me into going back on. Girl, U nailed it in this blog! My very serious challenge with the behavior & sweat aspects are; I’m homeless. In San Francisco. Stopped being able to afford living here about 10yrs ago. Thats what happened to a whole lot of us low wage workers here in the past decade. Was diagnosed w ER+ tumor 4 yrs ago. Been homeless the entire time, which, the extreme behavior puts me at risk with authorities with guns, like police. & I don’t get to change clothes or take a shower whenever I want. Sometimes I can’t afford to take a shower for over a week. When I’m all thru with my 5yrs of Tamox, I’m throwing a huge party & gonna burn a giant Tamox bottle effigy, like “the Man” @ Burning Man:-)
Samantha | 19th Aug 19
oh Andrea, sending you prayers warrior sister!
Lisa | 12th Sep 19
Hey Samantha, I really appreciate finding your blog. I’m 6 years into taking tamoxifen and have decided, for all the reasons you’ve listed in your post about it, that my quality of life is suffering too much. And 6 years is a good run! I hadn’t read about it causing rage in any other articles, but that’s exactly what happened to me. I’m turning 45 next week and am excited to get back to feeling (hopefully!) normal again.
And then there’s this whole implant recall. I’m one of the 5% of people in the US who has these. Just another lovely thing to come to grips with.
Thanks again for taking the time to write for all of us who are out there reclaiming our lives after “the good kind” of cancer.
Samantha | 13th Sep 19
HI Lisa! There really needs to be more support for those ‘lucky survivors’ of cancer… i feel as though we are left alone to flounder and be grateful we didn’t die… which of course we are… but we are truly different people now due to what we have been through. Hang in there warrior sister!
Andrea | 13th Sep 19
I just found this: Tamoxifen kills Glial Progenitor CNS cells!!! this is why we feel so bad. You can educate yourself here: https://www.webmd.com/breast-cancer/news/20130917/tamoxifens-mental-side-effects-are-real-study-shows#1
also here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3776059/
and never fear! There is a drug therapy that helps keep the mental side effects from manifesting, keeps the Glial Progenitor cells from being toxiified by Tamoxifen and also helps Tamoxifen keep cancer cells from developing: the class of drugs is called MEK 1/2 Inhibitors.
“Researchers from University of Rochester Medical Center have shown scientifically what many women report anecdotally: that tamoxifen is toxic to cells of the brain and central nervous system (CNS), producing mental fogginess similar to “chemo brain.” In the study, published in the Journal of Neuroscience, the researchers also report the discovery of an existing drug compound that appears to counteract or rescue brain cells from the adverse effects of the breast cancer drug.
Corresponding author Mark Noble, PhD, Professor of Biomedical Genetics and Director of the University of Rochester Stem Cell and Regenerative Medicine Institute, commented that it is exciting to potentially be able to prevent a toxic reaction to one of the oldest and most widely used breast cancer medications on the market. Although tamoxifen is more easily tolerated compared to most cancer treatments, it nonetheless produces troubling side effects in a subset of the large number of people who take it.
By studying tamoxifen’s impact on central nervous system cell populations and then screening a library of 1,040 compounds already in clinical use or clinical trials, Dr. Noble’s team found that the investigational MEK1/2 inhibitor selumetinib (also known as AZD6244 essentially eliminated tamoxifen-induced killing of brain cells in mice.”
I don’t know why my oncologist nor the psychiatrist I have sought care from offered me this drug.
I’m very upset. But at least I’m not alone. I’d blame Medicaid & being poor, but obviously not all the comments are from people are on Medicaid & who are poor. Esp not Samantha. So, somehow We All have been left out in the cold to suffer. So SAD. I’ve got an onc appointment on Oct. 2, 2019- in 3 weeks. I cant wait to ask my onc why in the h-e-double hockey sticks she has never offered me this drug even tho ive been complaining of mental side effects since about 1 week after starting Tamoxifen 3 & 1/2 yrs ago. THANK YOU FOR YOUR DEEP COMPASSION & SUPPORT!!! YOU HELPED ME SO MUCH!!!
Samantha | 13th Sep 19
Wow…. what fascinating reads… I will also be asking my oncologist about this too. I honestly think that more needs to be done to support cancer survivors after treatment… we’re left to sort of feel lucky to be alive… which we are obviously… but our lives are very very different now due to the chemicals in our bodies. Sending you love and support warrior sister! xx
Michelle Forrest | 13th Oct 19
Left my house in a rage last night. That’s the latest one since taking the satan pill. I started in August this year. I was suspecting some it could be hormonal. It’s even worse when some upset with a situation is warranted but NOT your explosive reaction. I hope my marriage makes it through this. So far I am ‘lucky’ to not have the joint pain & while I don’t really sweat I’m hot & cold off & on all night. But hey! On the bright side my period has stopped 😬 THANK YOU FOR SHARING.
Samantha | 14th Oct 19
I am right there with you sister! I’m so sorry you too are experiencing these horrible side effects. Hang in there for the crazy ride! XX
Hermien | 25th Oct 19
Thank you!!! I’m not alone in this and not making it up… I’m not recognizing myself anymore, especially when I’m angry (or upset)… I have 8 more months to go to end the 5 years, yeah!! Counting the days… no: counting the hours and minutes!!!! 😉
I really hate the tamoxifen, because of this hell medication I lost contact with our daughter (just turned 20) haven’t seen her for 6 months now… She doesn’t want any contact with us (= mum and dad and grandparents) and blocked us everywhere. It’s killing me!!! Now she believes she was mentally abused and I am a narcistic mum 😱😢 I am a lot, but abusive and narcistic??? No way! Overprotective yes, and even more after being diagnosed with breastcancer… nothing is certain anymore after that…She was my biggest reason to fight! I wanted to see her start her own life, graduate, getting married (or not) and all that stuff!!
I don’t know what to do… don’t know how to keep going… will she ever come back? In 1 year? 2, 5, 10? This is even worse than the diagnose itself…
Samantha | 30th Oct 19
Hang in there! Hope you are able to work things out with your daughter, I’m so sorry you are going through this!
Tana McGhee | 4th Jan 20
I was diagnosed in 1996 with Breast Cancer that was estrogen receptor positive. My age at the time was 36, with a daughter just starting into high school. I had a mastectomy of the right breast, followed by chemo treatments for the several months. When diagnosed my system was very healthy and normal. Monthly cycle was always right on time and very normal. Chemotherapy had not been around very long, so research was limited to the public. Upon completion of the Chemo, my Dr. prescribed Tamoxifen. I began my research on this drug and determined all studies had been preformed on post menopausal women. No research had been done on any premenopausal women. Chemo gave me a chemical induced menopause, but prior to the chemo, I was still having a cycle. With the lack of research on women that were in the premenopausal category, I went against everything my Dr recommended, and refused to take the tamoxifen. It was a decision I do not regret at all…..I knew what was best for my body, and did not like the risk of additional organs becoming attacked by cancer. I too, asked for a hysterectomy, but was told it would not decrease my risk of Uterus cancer. Praising God with all the Glory, I have recently celebrated 22 years without a return of cancer. Do your homework and research Ladies, and trust the Spirit speaking to your gut about how to handle your diagnosis.
Samantha | 5th Jan 20
WOW, thanks for sharing. I agree, it’s important to be advocates for our own health. Congrats to 22 years and hoping you stay healthy for the next 22 years!
Kathleen | 5th Jan 20
This article is spot on. I am bringing it to my onco. Surgeon. Thank you
Samantha | 5th Jan 20
So happy you found it helpful! Good luck!
Mary Mouton | 6th Jan 20
Hi Samantha. Thank you for sharing as i really thought i was going banannas, and from a caring person to a raging bull. Dont forget the cramps. Oh, the cramps got me that my fingers legs and toes were in spasms and caused such agony. i flew out of bed in the middle of the night with a Charley Horse!! I am now on a differant chemo. The Tamoxifen is excellent, it killed my metastasis, but the cramps were hell.
Samantha | 6th Jan 20
oh yes, the cramps are not fun either. Wishing you a healthy 2020!
Brandi | 6th Jan 20
You describe what I am going through to a T. Thank you. I could never get the right words out. No one knows unless you are going through it personally. Thank you
Samantha | 6th Jan 20
We are not crazy… we are just chemically challenged. Sending you love and health for 2020!
Caroline | 28th Jan 20
I can not thank you enough for writing this – it’s like getting a massive hug! I’m only 2 months in and finding it so challenging. Everything you talk about I am also going through and I feel completely in the wilderness since treatment finished last month. Honestly in some ways this is worse than the bloody chemo… at least I had good days and there was an end in sight!
Samantha | 28th Jan 20
ahhh so happy you found this helpful. I’m sending massive hugs to you my warrior sister as you go through this lovely journey we have both been given. 🙂
Karolina | 21st Jul 20
I’m happy to have found this post. I shared it with my family who keeps telling me “we know what you are going through“. They don’t have a clue and I do not want them to experience physically what I’m dealing with bc then they would be on Tamoxifen. I just needed them to cut me some slack emotionally. They want me to be the same person I was prior to DX.
My husband read this and said “yes, that’s you”. He has been much more supportive since reading your post.
Thank you for that. I can’t express my appreciation to you adequately.
Samantha | 26th Jul 20
I am so incredibly happy that you found this post. If you are not going through this it is ver isolating and can be lonely. You are not alone sister! XXX
Jenny | 29th Sep 20
I’m so happy to have found this post! I have been on Tamoxifen for 4.5 years. I recently switched insurance & got a new Dr. I told my new Dr I was feeling “brain fog” and would you believe she basically would not confirm our medication has side effects and (wait for it..) she referred me out for neurological psych evaluation! I know right!…I lost my sh*t. She won’t even entertain the idea this medication has side effects…nor will she answer me when I ask her opinion. Thank goodness for this post! Feels good to know this brain fog is a real side effect & I am Not alone. *P.S. I’m getting a new Dr.
Samantha | 29th Sep 20
Hi! I am so happy you found this… you are not alone.. the side effects are real and they impact us greatly. I’m sorry your doctor didn’t understand that but I’m happy you are finding a new doctor. Hang in there! xx
Andrea Draper | 22nd Feb 21
Hello again! I commented over 2 years ago. Since then I went off tamoxifen as an experiment to see if my symptoms went away. They didn’t. I’ve had them for over 2 years. Come to find out, it’s not the tamoxifen causing the symptoms. It’s the breast implant. I had reconstruction after my mastectomy (unilateral) with a gummy bear implant made by Allergan. It turns out that type of implant as well as over 30 other models cause Non-Hodgkins Lymphoma and were removed from the market by the FDA in July 2019. I have retained an attorney and filed litigation. I’m also getting explant surgery. Breast implant illness is not limited to Allergan implants, like non hodgkin’s lymphoma seems to be. All the symptoms that we were attributing to tamoxifen can also be attributed to breast implant illness. From the FDA website: ‘Symptoms such as fatigue, memory loss, rash, “brain fog,” and joint pain may be associated with breast implants. Some patients may use the term “breast implant illness” (BII) to describe these symptoms. Researchers are investigating these symptoms to better understand their origins.’ https://www.fda.gov/medical-devices/breast-implants/risks-and-complications-breast-implants There are many resources online- all that I have seen are excellent & offer much help and support. Thank you again for being so spectacular & marvelous & sharing so intimately about yourself so as to reach the hearts of so many. Please keep up the good work!
Samantha | 23rd Feb 21
WOW, thank you so much for sharing this information. I have heard about the implant recall, i also had those implants initially, but wasn’t aware that some of these symptoms could be attributed to those. Really appreciate you sharing this and hope you are well! XX
Jess | 28th Apr 21
Another aspect to this is that estrogen levels affect ADHD symptoms in women. In fact menopausal women with ADHD are sometimes prescribed HRT (estrogen supplements, basically) to counteract the worsening symptoms from a lack of estrogen. Guess what happens when you’re on an estrogen BLOCKER? I’d gone back to college before my BC dx and was a straight A student. Now I struggle so much with the simplest tasks. I’m planning on asking my oncologist about the treatment someone mentioned in another comment, but I can’t find anything about it after the initial studies in 2013 so I’m not particularly hopeful.
I get the rage/ lack of filter thing too. I’ve flown off the handle in family text chains so often that my siblings have started avoiding me. It’s awful. One one hand I’m so grateful that I can take Tamoxifen because my cancer is much less likely to come back, on the other it’s a terrible choice to have to make between living this way and risking a relapse. Oh and if this was a problem that affected men you can bet the research would have been done and a solution found years ago. >:(
Samantha | 28th Apr 21
All of this is so true… i wish it were more talked about. Hang in there. 😉
France Barbeau | 26th Jun 21
Thanks so much for this! I am in bed after having screamed my lungs out for no reason (scared my 3 year old and my hubby). I am crying thinking I can’t do this. I can’t be like this. Feet are hurting and I’m now obese. It’s so hard.
Samantha | 27th Jun 21
Oh dear, I am so sorry to hear this. The lows are pretty low as you travel this journey. Please know you are not alone and that things will get better xxxx
JC | 7th Jul 21
Wow, thank you for sharing! Been on it for 1 year. I was told the side effects, and that there could be “mental fogginess” and joint pain, but that those side effects were not as common. Well, besides hot flashes & night sweats, my feet and hips hurt when I get up from sitting/lying down. Every day. I feel like a little old woman. But the mental fog is the worst! It’s impacted my memory, verbal comprehension and expressive language. I will forget what I’m saying mid sentence (once or twice a day), or forget a word and basically have to play Charades! But it’s reducing the chance of recurrence, so it is what it is. Again, thanks for sharing your experiences, as it helps others feel supported and might just give someone that push to keep at it!
Samantha | 8th Jul 21
I wish that the doctors were more clear about the side effects… i mean you’re correct, it’s reducing the chance of recurrence so of course we’d take it, but it would be nice to have a heads up of what we can expect. Hang in there. Sending you lots of love and health!
Stacie Towe | 10th Oct 21
I so feel this. I’ve been on tamoxifen for 3 years now and I hate it. Thank you for letting me know I am not alone.
Samantha | 11th Oct 21
urgh – i am so sorry that you are having these side effects from this drug. It is a wild ride for sure, but you are NOT alone… sending you lots of love xxx
LA in California | 17th Oct 21
Samantha I so appreciate your blog. I have been on Tamoxifen since August…started just on 10mg and almost immediately experienced the emotional swings, rages, lack of filter, exhaustion, mental fogginess similar to chemo, etc., in addition to the hot flashes, interrupted sleep, etc. Really awful. Switched to a keto diet, nearly eliminated caffeine and alcohol, and started a daily exercise routine (as well as added weekly acupuncture appointments). Didn’t eliminate the side effects, but definitely helped make them more manageable. But a lot of work!!
Follow up appointment with onco a week ago – he told me I really needed to step up to the 20mg dosage. I shared my concerns with him about the horrible side effects I had experienced and the extreme efforts it took me to get them under control. Now it’s been a week on the 20mg’s and all of the horrible side effects are back. Trying to decide whether to drop back down to the 10mg to regain my life and personality, or continue at 20mg and risk ruining my marriage, etc., but have the best benefit of “recurrence prevention”. What kind of choice is that to make?
Side bar – breast cancer survivors now have an option in the form of Effexor which can help with the hot flashes and some of the mood issues – it is not contraindicated with Tamoxifen (like many of the SSRI’s are). Might be worth an ask if your recurrence risk is high and you are going through what we are going through.
Samantha | 18th Oct 21
There are so many tough decisions that i was completely unaware of and I’m sure many others are too… there is no ‘one size fits all’ and the side effects of the various medications can vary considerably from person to person. You’re right, we shouldn’t have to choose between our risk of recurrence and mental health… just one other reason why being dealt the cancer card is hugely unfortunate. I am sending you much love and strength my warrior sister as you travel this journey. Please know you are not alone and you have many people who are going through the exact same thing! Hang in there! XXX
cannabryl | 18th Oct 21
Cannabryl sources the best of weed concentrates and spices from the most flawless of regular sources and creates them into prescriptions, following severe conventions and practices.
CBD oil india and implantations made by cannabryl are wealthy in CBD, THC and other cannabidiols that assistance in focusing on the endo-cannabonoid framework, subsequently achieving a plenty of advantages, including help with discomfort, alleviation from uneasiness, etc.
Catherine Hollerbach | 8th Nov 21
Thank you for sharing your story. I, too, am experiencing bad side effects and am considering going off of the Tamoxifen.
Samantha | 8th Nov 21
OH Catherine – hang in there… it does get more bearable… speak to your onc about other options… sending you lots of love! XXX
Lynsey Kerr | 1st Mar 22
Hi Samantha, I hope you don’t mind this message.
I’ve just read your blog on Tamoxifen side effects… while it made me laugh it also brought me to tears as it’s the first thing I’ve read that actually explains how I feel and I’ve only been on the stuff for 10 months! I also get what I call tamoxi days where the tiniest thing will make me burst out crying.
I was diagnosed with stage 2, grade 2 invasive lobular carcinoma 24mm, 3 days before I turned 37… We had just started trying for our first child 2 days before I found my lump and I’ve been in hell ever since. Thank you for writing this and actually saying it like it is instead of all the sugar coating that oncologists do. I have done a lot of research into the MEK1/2 inhibitors that someone mentioned above and have discussed them and the studies at length with my oncologist. They are used in the treatment of some cancers but not in breast cancer. She also told me that tamoxifen is a “just in case drug, it’s there to help stop recurrence but in the same breath there’s no guarantee that your cancer will or won’t recur anyway” With regards to our side effect hell, I spoke to my oncologist about my worst side effects (rage and brain fog… I couldn’t remember basic calculations for work and I’m talking as simple as converting grams to kilograms) she reduced my tamoxifen from 20mg to 10mg per day and put me on Venlafaxine Hydrochloride and god what a difference it has made! I have my 1 year review with my consultant in the middle of May, if he gives my the OK, my oncologist has agreed to let me take a break to hopefully have a baby.
Hope you are well
Samantha | 3rd Mar 22
Hi Lynsey! First of all I’m so happy this article helped you feel as though you are not crazy, and i’m so sorry you are going through this cancer journey. It truly is a drag. I’m glad you were able to work with your onc to find a happy medium that works for you! That’s amazing! And I am REALLY REALLY hoping you are able to take a break to make a beautiful baby! Please keep me posted! XXXX
Matt | 6th Apr 22
Thanks for writing this post. My wife has been on Tamoxifen for almost 2 years now and I can tell you the rage is real. She used to never lose her temper and was always calm, cool and in control. Now it’s the complete opposite. If I dare bring this topic up I’m immediately attacked.
I love my wife and she’s been through a horrible experience with breast cancer but she is not herself anymore. Is there anything else I can do to help her? Thanks!
Samantha | 9th Apr 22
Hi Matt, I am so sorry that you and your wife are both going through this. I say both, since when cancer pays a visit it impacts the WHOLE family. It’s so hard being the caregiver and watching this change.From experience my husband and I were literally hanging by a thread for a long while.My guess is she knows that tamoxifen has changed her, and she feels helpless, angry this is happening, and frustrated she is living with all of the side effects I describe in the article. Which is why she perhaps gets defensive when you bring it up… you know the saying, you attack those you love the most because you feel the safest.For my husband and I, there was one outburst that scared us all, and was almost my rock bottom, and I spoke with my doctor and reluctantly tried some of the other medications available to mitigate some of the tamoxifen side effects.
Maybe you could let her know you are worried about her, have her read this article and ask her if she relates to anything I’ve written? It could be a good starting place for conversation.
Sending you both so much strength, love and grace as you navigate this together. You sound like a great guy, she’s lucky to have you.
Mike | 6th Jul 22
All I can say is wow. My wife of 20 years went on it and within 6 weeks she stopped feeling “us” but didn’t tell me for 6 months. I knew she was changing and just stood by her and loved her thru it. One day she told me she wanted a divorce.
I reached out to her “former” oncologist and told her she has changed and wants a divorce. She said get off the meds, go to counseling and it will turn around but she wouldn’t do it.
It only took her 6 weeks to end our marriage and now we are done. She said God led her to
divorce me. I am a missionary and she was my ministry partner for 20 years. . This stuff killed my 20 year marriage and no one will listen to me about it.
Samantha | 8th Jul 22
Mike, I’m so sorry for your loss…. It must be devastating for you and I am sending both you and your wife much love as you navigate this. Hopefully you can both find guidance from specialists. xx
Lynn | 8th Jul 22
My story is more about my sister she was diagnosed with breast cancer several years before me was offered Tamoxifen went on it and became the sister from hell her mood swings were scary and she cried all the time her quality of life Zero.
She came off and immediately felt human again she decided to stay off and take her chances had nine years of good quality life until the cancer returned in her breast but she just said what a bloody inconvenience and dealt with it and that was 2 years ago she still refuses to take Tamoxifen and believes a good quality shorter life is better than suffering all the shit side effects of this drug and being miserable for 10 yrs out of fear it will come back.
I wouldn’t take Tamoxifen when I was diagnosed with breast cancer instead stuck 3 years of hell on ANASTROZOLE which I was told is a better drug but had to stop cos in so much bone pain and it was aggravating my osteoarthritis spinal & leg pain.
Now I have another story of my friend who was diagnosed 3 yrs before me she took 4 yrs of A drug and has just been diagnosed with bone cancer yet the A drug is supposed to have lasting effects to protect you after taking it.
I do believe your dammed if you do and dammed if you don’t it’s the luck of the draw weather you take this drugs or not No one knows unless you take these drugs how Shite they are to take so many women suffering on them.
For me like my sister I’m now taking my chances and have felt so much more alive again since stopping.
Just thought you might be interested in my story
All the best
Samantha | 8th Jul 22
Wow, it’s amazing how differently this drug affects us all. Some people can have no side effects, but others suffer devastating side effects. I agree with you… it’s a personal choice and you have to weigh all options with the quality of life you are experiencing… i’m so grateful I was able to get off this drug after 6 years. Thanks for sharing and wishing you and your whole family much love and health xx
Ariz | 18th Sep 22
Just wanted to say as anyone experienced numbness of the legs from the thigh down to the ankle with pain and numbness This is 3 and a 1/2 years of taking to moxifen
Samantha | 19th Sep 22
Hi Ariz, I did not experience numbness of legs, I’m so sorry you are experiencing this.
Amy Hankins | 24th Oct 22
Hi, I went off Tamoxifen for a few months to see if it was actually causing my joint pain, soreness in the legs and fatigue and it certainly was. I went back on it and the side effects came roaring back. One thing that helped with brain fog, however, are Vitamin B12 drops. I use a brand called Pure. You hold it under your tongue in the morning for a few minutes before swallowing it, and it’s made a huge difference in my energy and brain power. I’m currently working with a functional medicine nurse practitioner on the pain side of things. Hopefully I will get some answers. Really wish this drug was studied more…there has to be a better way.
Samantha | 25th Oct 22
HI Amy – YES, that joint pain is real… I felt sore constantly. Pure sounds interesting, I’ll check that out! And yes, Tamoxifen seems to be the catch-all for life post cancer and it would be nice if there were other options. Sending you love and health!
Leave A Comment