Tamoxifen Side Effects Can Hamper Memory, Cognitive Ability: Study

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By: Staff Writers | Published: February 17th, 2010

The results of a new study suggest that side effects of tamoxifen, a breast cancer drug, can lead to decreased cognitive abilities and memory loss. 

Women who took tamoxifen for a year or more were found to score lower on verbal memory and executive functioning tests, according to researchers at the Netherlands Cancer Institute in Amsterdam. Their results were published this month in the online version of the Journal of Clinical Oncology.

Tamoxifen was first approved by the FDA in 1971 for the treatment of breast cancer. Originally developed by AstraZeneca under the brand name Nolvadex, it is now sold under a variety of brand names, including Istubal and Valodex, and is also sold as a generic. Tamoxifen works by inhibiting the development of estrogen, which is believed to stimulate the spread of breast cancer. As of 2004, it was the largest selling hormone-based breast cancer treatment drug in the world.

Dutch researchers, funded by Pfizer, tested 299 women, including 80 women prescribed tamoxifen and 99 women taking Pfizer’s competing Aromasin (exemestane). They found that tamoxifen users had a statistically significant drop in verbal memory and executive functioning skills when compared to healthy control groups. Aromasin users showed no significant cognitive differences, researchers said.

Executive functioning includes the ability to shift attention between two different parts of a task. Verbal memory is the ability to retain and recall spoken information.

Researchers were at a loss to explain why tamoxifen caused a drop in cognitive abilities, but there have been a number of studies that link estrogen with verbal memory, including a 2004 study by U.S. researchers who found that estrogen boosted long-term memory in men, and other studies that suggest women tend to have better verbal memory skills than their male counterparts.

The results of the new study comes on the heels of other research involving the drug, published in the most recent issue of the British Medical Journal, which found that selective serotonin reuptake inhibitors (SSRIs), like Paxil, can interfere with tamoxifen, reducing or completely mitigating the breast cancer drug’s effects. SSRIs are often prescribed to breast cancer patients to combat depression.

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There Are 74 Comments So Far • (Add Your Comments)

  1. There have been no studies of the side effects of Tamoxifen use in men but I now have an explanation for the cognitive loss my husband suffered while receiving this treatment for Male Breast Cancer.

  2. I have been on tamoxifen since 10/07.
    Recently I have wondered if I have been experiencing a form of early dementia…I am currently teaching at the ocllege level and I have poor recall of the material that I presented at prior classes, my writing has suffered, I don’t have the saame abilities to ‘multi-task’—I have to do things in a much nore linear fashion…and not do too many things. An obgyn nurse practitioner mentioned this study. I’m not sure where to go from here…I am also on Zoloft. Any thoughts out there?

  3. I took Tamoxifen for 5 yrs. I do have memory loss now. I also just found out that taking tamoxifen & antidepressents make the tamoxifen not work. Took Prozac while taking tamoxifen. Now I am wondering what might happen next, if the tamoxifen didn’t work. I am going to talk with my onocoligist.

  4. I had a double mastectomy on 2001 after kemo treatment I took Arimidex for 4 years and the doctor change it to Aromasin due to a lot of pain in my joints. After taking Aromasin for 6 years I had develop Parkinson’s and my doctor decide to cancel the Aromasin on 2009 because my Neurology think that what have create my Parkinson’s is the Aromasin pill . Now I have been with the Parkinson’s since 2007 and I am with dissabily retirement because of the tremors on my left side.

  5. I have been taking tamoxifen since Jan. 2008 and have noticed reduction in memory skills, i.e., losing the “right” word in conversation, short term memory recall.

  6. May be this explains why I now frequently misspell words. I was always at the top of my class in spelling when I was in school. Now I always have to use spell check. This started after taking tamoxifen.

  7. I also have memory loss of words , misspell words, Had my vitrious of both eyes detach, have had personality changes, and have had to stop work. I only took temoxifen for a year and stopped when the vitrous detachment occured,because my optomatrist told me only very old persons had this condition and i was 57 at the time not 84. The doctor told me that the tomoxifen would block the hormons from reaching my breast , he did not tell me that all hormone production would stop. I had not started menopause at the time. The hot flashes have been debilitating. Any one else out there with these problems.? Has there been a class action law suit.???

  8. Any one with information on the long term side effects of Tamoxifen please lets talk about it . Memory and Eye problems for me.

  9. Elizabeth, I’m not sure what you’re taking Tamoxifen for but I’ve tried it 3 times now for breast cancer & recently stopped it again bc of severe cognitive problems. I’m a grad student & need my brain at full capacity. On Tam. I feel like the village idiot. The alternative given by my onco (Lupron) is not tolerable for me either due to wild mood swings. I’m having to decide how important quality of life is to me. It seems to be a choice of increased chance of cancer reoccurence & feeling relatively normal vs. decreased chance & feeling crazy. If you’re an academic, the side effects can prove extremely difficult to live with.

  10. I too am experiencing terrible memory loss following tamoxifen. I can’t count the amount of times I said to my husband I think I’m starting with dementia. Im 55 years old and used tamoxifen for 3 1/2 years then quit due to the side effects. Sometimes I feel like I sound like an idiot. Simple words won’t come to me. There are days I could just cry out of frustration.

  11. I thought I was the only one with this problem of memory loss after starting tamoxifen. I have been on it for 3 years and feel my memory is getting worse. Hot flashes, depression, swelling, joint pain, but the one I hate the most is the memory loss. I just found this site but hope others post their reactions and any alternatives.

  12. Been on Tamoxifen for 2.5 years. Noted in past 6 months, an increasing inability to remember words (usually nouns/nasmes of objects). Also mood swings have worsened. “Flash” in anger over trivial incidents, followed by “emotional flatness.” My oncologist indicated (I see him in 5-6 months) that we will “talk” about the length of time I should stay on the drug. Fibve years, it seems, is not necessarily set in stone. ASK YOUR DOCTOR if you’re suffering cognitive loss.

  13. im permantly disabled. memory loss sezuires bone loss you name it i have had every bad side affect other than liver cancer!!!!

  14. in 2007 i took tamoxifen for a year for my breast cancer.i was sick the whole time i was on it with severe memory loss.Both of my legs were in severe pain and the doctor said it was a side affect and it would go away but it never did. finally i took myself off of the tamoxifen and found another doctor.who gave me arimidex the pain still continued until finally i stopped taking the arimidex. my treatment was supposed to be for five years it only lasted for a year and a half. now i just keep up with my regular checkups and hope everything is ok. My legs are still in pain every day and i have to take pain meds just to go to work everyday and my memory isnt all that good.I allso have severe twitching and the doctors just act like i’m crazy.I am fify years old and i have never had pain this bad or that has lasted this long

  15. My wife had breast cancer, lumpectomy & chemo. She took Tomoxafin for 2-3?yrs. She was rediagnosed a few years later. She stopped all Tomoxafin. Chemo, Radiation,Gamma Knife. It came back in her Bones, Lungs, Brain & Spinal Cord. All the while have NO SIGNS in her routine tests(cancer markers). It came as a pain @ first. BUT she is not the FIRST I heard to get agressive brain tumors after TOMOXAFIN. She Died 34 months after we aere married :( she was re-diagnosed 6 weeks after we were married. We got robbed of our life together, we knew it would end bad…

  16. I have been on Tam for about 2 years now. I have always had a fantastic memory, now it is horrendous! Also, I jokingly say that I have become NOUN IMPAIRED, but it’s no joke! It’s impacted most aspects of my life. In particular, my work has suffered, I have always done extremely well in my work, which is very technical, things have changed drastically since TAM! One small interruption can caused me to lose track of a project I spent weeks working on!!!! This is aweful, a “catch 22″ Do I go off the meds and take a chance of cancer re-occuring or stay on them and ruin my career???

  17. After taking Tamoxifan, i have had peripheral neuropathy in both feet, cognitive impairment- loosing words that should be familiar in conversation, memory loss, mood swings, etc. I have always been top of my game, but since taking Tamoxifan I can’t hike or walk any distance. Learning new information from lectures or reading is a hard chore. Information just doesn’t stick any more. I would like to know if other people have suffered peripheral neuropathy after taking Tam. and have there been law suits filed?

  18. My mother took Tamoxifen for more than two years. She died at age 56 on Dec 14/10. She spend 23 days in the hospital before she died. Her chemo did nothing as the cancer was in her liver and already to aggressive to fight. Her cancer spread very quickly. One thing she told me before she was admitted to the hospital was… “If something happens to me look into Tamoxifen class action suit.” My mother had been complaining for over 2 years… And, now her life has been taken.

  19. I was diagnosed with breast cancer April 2008. Stage 2, had 2 surgeries and 33 radiation treatments. Dr. insisted I take tamoxifen. I have never taken any medication, I have always been very healthy until the breast cancer. Started the tamoxifen Nov 2008, by early spring 2009 I was having problems thinking, my skin changed and the sun would cause me to blister. By summer 2009 my joints were swelling, my lips and tongue would swell. I was not taking anything but tamoxifen. My oncologist told me in August 2009 to stop taking the tamoxifen. I did so and in 30 days I was beginning to feel better. However, they said it was important for me to take it again to keep the cancer from coming back. I started again in early Sept and by early October I could hardly move around or get out of the bed. A toxicity specialist from UVA ran test on about 7 vials of blood, I was then called and told the tamoxifen had caused a drug induced lupus state. That was Oct 2009 and now it is Dec 2010 and I now have to take plaquenil and steriods every day. MRI’s show bone damage. The makers of tamoxifen do not tell you any of this. My life has been so difficult since taking tamoxifen and I was not even on it for an entire year. I feel certain it would have killed me if I had continued to take it.

  20. I have been taking tamoxifen for 3 years now and I now have bone aches, High Blood Pressure, Memory lapse , and weight gain.

  21. IHAVE BEEN ON TAM FOR 4 YRS & MY MEMORY WITH NAMES HAS

    GOTTEN WORSE TO THE POINT OF EMBARASSMENT! I FEEL LIKE MY
    BRAIN & MOUTH ARE NOT WORKING TOGETHER AND I FORGET WHAT
    I AM GOING TO SAY. I HAVE ONLY 8MONTHS LEFT TO TAKE IT.
    WILL MY MEMORY IMPROVE?

  22. I have been on Tamoxifen almost 3 years. I have terrible recall of conversations and what I am experiencing short and long term memory loss and it is getting worse. Everybody thinks its stress..but this is happening waaay too often and it is embarrassing and has definitely given me problems, more than I want to actually admit. I don’t know if your memory will improve, but it is definitely probably due to hormones. Make sure you check with your doctor. My mother says I get a totally lost look when this happens and it has been happening much more often…I understand embarrassment..I really do, I hope you are getting the patience and love and support you deserve…nobody seems to understand on my side of the planet except my folks.

  23. I took Tamoxifen for only 8 months, had a hysterectomy and was put on Femara. I started having joint pain, numbness so I took the chance and have been off all breast cancer meds for 2 years now. I feel great. I just take vitamins that help balance my hormones. So far I am cancer free. I figure if the cancer ever came back there will be more advanced techniques available, like chemo that just attacks the bad cells and leaves the good ones alone. I’d rather take my chances and live a good quality life than in constant pain. Good luck to all. DoSpeak up to your Oncologist and listen to your body!

  24. I began taking Tamoxifen at the end of November. I have had ongoing flu-like symptoms, fatigue, muscle pain/joint pain, headaches, problems with my vision that was not evident before, a short fuse that was never there and the memory loss. I am scared. I am a phd, academic and clinician and 48 years old with a huge breast cancer history in my family. I was diagnosed with atypical lobular hyperplasia and there are at least 5 more tumors inside. I feel like everything is slipping away and I have to take this for 5 years if it doesn’t kill me first. I am considering preventative bi-lateral mastectomy. I have always been the one to take care of others; including my partner who is also a breast cancer survivor.

  25. I have been taking tamoxifen for about 7 months .I started noticing memory lost afetr 3 months .I asked my oncologist if it was a possible side effect and he told me that it was’nt.It has been getting worse to a point where I have trouble memorising or retaining info that I read..I am experiencing short time memory lost.Last week I got lost while driving to a destination that I have known for the past 20 years..It is to a point where I cannot concentrate ,forgetting passwords on my computer that I have been using daily..I have decided to stop taking it today for this is not quality life,its getting unbearable for me..

  26. Everyone that I have tried to explain what I’m going through to thinks I’m crazy, exaggerating or credits it to getting “old”. I’m 52!!! This should not be happening now. I sound like my mom when she talks and she is 76. I can’t remember simple words, lose track of conversations, tasks that I’m in the middle of and can’t remember what I’ve just read. The most horrifying thing to me is that I forget my husband’s and kid’s names. I’ll be talking to them or call them from their rooms and have to stop and picture their face in my mind to help remember their name. I’m scared to death. I took tamoxifen for almost 5 years. I have been on aromasin for 3 years now and if anything it has gotten worse.

  27. My wife ruth was diagnosed w/breast cancer and had a one side mastectomy.our youngest daughter jamie had the genectic marker for breast cancer shortly after her mother was diagnosed.she took tamoxifen for 31/2 years before suffering a fatal stroke.her m.d. said it was posiblbly tamoxifen poisoning that caused the stroke that took her life at age 51.Her mom preceedher in deathe
    by 3 months of brain cancer.tamoxifen is a hidden killer of women.use caution if prescribed

  28. I am angry and relieved. Angry that tamoxiain is probably responsible for this terrible memory loss. I am embarrassed when I speak since I can’t find the correct words to express my thoughts. I have Masters Degrees and used to pride myself in the use of words. Now I don’t want to hold a conversation because of this situation.
    I am relieved to know that it was probably medication that caused this frustrating situation and not dementia. small victory!

  29. My mother is dying from taking Tamoxifen. It ruined her liver! I am wondering if there is a lawsuit in progress for this drug. She may have 6 months left. She is suffering so bad and has lost everything in the process.

  30. My Macbook Pro’s glossy screen has been causing me ocular migraines a few times a week. I have been a computer user for 15 years + and no other screen or monitor has caused this kind of issue.
    Is there a lawsuit in progress against Apple for this? Is a lawsuit a possibility?

  31. Is Kaiser Permenete her medical provider???? I ask because my father was murdered right in front of me, he suffered horrifically. Kaiser did it. The Pharmaceutical companies and their Drug pushing doctors, are getting rich at the expense of innocent Patients.

  32. I have taken Tamoxifen for 14 months, & have lost my hearing! I am 73, & have read 4 different web-sites that talk about Tamoxifen & Deafness, especially in older women! I will pick up my hearing aids this Tuesday, as I have 100% hearing loss in my left ear, & 60% in my right ear. NO-ONE ever mentioned this could be a side-effect!

  33. I started taking Tamoxifen in the fall of 2009. After approx. 6 months I had developed severe memory loss. I was forced to withdraw from my college courses because I could not comprehend or retain the material I was learning. I had always been an excellent student.
    Many other dangerous incidents happened as well due to loss of cognition.
    I stopped taking Tamoxifen in the spring of 2010 hoping my quality of life would improve. I\’m currently back in school and still struggling to comprehend and retain information. I believe I may have permenant damage. If anyone is aware of a lawsuit please contact me. Somebody needs to be held responsible for the damage this drug causing and the subject of pulling this drug off the market needs to be addressed as well.

  34. Anyone lose the ability to sleep? I took Tamoxifen for 3 months and my sleep went from 8 hours to 3 – 4 hours the first day I took it. After 3 months, I am not capable of sleeping. My adrenaline and neurotransmitters were tested. My doctor told me sleep is not possible. Since I don’t sleep, my memory isn’t very good. I’d like to sue!

  35. i am homeless living in a motel and i have been taking tamoxifen since 2008 if you wish to contact me you can by phone but i now have major medical thanks to tamoxifen i now have a cather in me i can’t pee on my own. i have cysts all over my overies and a mass on my uteries i have to go to a obgyn clinc now on tues all this just came up last week and no regular dr will take me due to the fact that i have no insurance and all i can say gee now i have major medical and no one is there to help me not sure how i am going to pay 3 er vistis i need a laywer to help me i want a part of any settlement now because i need pain and suffering and major settlement money

  36. I have been on Tamoxifen for a year and had started to slur my words like I was drunk all the time. Also couldn’t find words. I just went off of it for a month, and what a difference, I have stopped slurring and my recall of words is improving. I also have had what someone above mentioned, Tamoxifen crystals and a detached vitreous in my eye that has just occurred in the last year. I normally can hike 15 miles in a day on vacation and my toe nails continue to fall off (1.5 yrs out from chemo for breast cancer.) Don’t know for sure what to blame thatt on but the memory, word slur thing sure seems related to Tamoxifen. Also bladder irritation has improved since I went off of it – - now the scary decision whether to stay off of it or not…. may the force be with us-

  37. I was on Tamoxifen for 5 yrs after surgery for breast cancer. I stopped taking it 2007. I told my Dr. that my mind was not clear, & I was forgetting simple things about 2 yrs after I was on it she told me I need to stay on it the whole 5 yrs, & there was nothing else for me to take. I was independent & working full time as a respiratory therapist. I could not keep working because I was forgetting how to do my job. I was not safe to take care of patients. I don’t feel safe to drive. I don’t remember where I am going. I am on SSDI now. Please help me.

  38. I took Tamoxifen for one year. After taking it for two weeks I became ill and was eventually diagnosed with Hepatitis. I felt ill for a long time and I also suffered weight gain which I am certain is connected to low liver functioning. Now I am tired all of the time, have permanent indigestion and am at much higher risk for liver cancer. No liver functioning screening was done prior to prescribing Tamoxifen and although I complained for months to my dr. it was a naturopath who ran liver functioning tests for me and discovered I had hepatitis which I had did not have prior to taking tamoxifen. I am sure that this not an uncommon side effect because I have met several people who have suffered from the same thing after taking Tamoxifen. My oncologist had the nerve to ask me if I was using intravenous drugs or was involved in the sex trade. I will never go back to see him again!!! This is what you can expect as a response from someone who is a drug pusher for the pharmaceutical companies. More research needs to be done about the side effects of Tamoxifen on the liver and whether the pharmaceutical companies are liable because they did not require screening of any kind before prescribing Tamoxifen or while patients were taking it. I think it is outrageous that in the name of commerce these drug companies are allowed to poison people with their drugs. Everyone out there should be having liver functioning tests done to avoid liver cancer.

  39. I too was on tamoxifen for 5 years, and thank my sister advised me to go on the computer to see about lawsuits have been filed. I am so happy to know I’m not the only one who feels this was a horrible drug. My memory is just about gone ( no joke) I also suffer with periphial neuropathy which keeps getting worse. It use to be horrific pain in my feet and legs. Now my hands are starting to feel the same way with pain and numbness. I had nerve decompression surgery on my left foot in 2007, and it did not help, so I never let them do the right foot. I started taking this bad drug in 2003, and stopped in 2008. Some asked if the pain gets any better and the answer to that sadly is no. If anyone knows of a lawsuit, please let me know

  40. I was diagnosed with left breast DCIS in May 2009; had a lumpectomy, radiation, and started on Tamoxifen in Sept. 2009. In the past month or so, I have experienced severe memory loss, problems in spelling even simple words, and lately, becoming disoriented while driving on very familiar routes. It now has become evident to my adult children who are encouraging me to speak with the medical onocologist and even stop the medication while continuing with yearly mammos and MRI’s. At the age of 75, I am inclined to take their advice for the sake of quality of life. I am in excellent health otherwise and also worry greatly about the chance of developing uterine cancer since I have never had a hysterectomy. I have also had two episodes of (one year apart) of dark vaginal discharge which my Gyn assures me is from the Tamoxifen, but I want an endomentrial biopsy done soon. I think this is another case of a drug rushed to market by money greedy manufacturers without waiting for long term effects. My advice….BE YOUR OWN ADVOCATE.

  41. I have a friend who has been on tam. for one year. She is a mess. I would like to hear from women who have weathered the 5 years of tom. Has their quality of life returned? Has the memory issue improved? Is there any light at the end of this dreadful tunnel? Thank you gg

  42. Hello, my name is Sharika and I was diagnosed with breast cancer in August 2010. I was diagnosed with DCIS stage 2 in my entire right brest and a few lymp nodes.I had a bilateral mastectomy, left breast for preventative. I am 29 years old and taking tamoxifen. I started last October 2010. Since my therapy with the meds I have experienced memory loss, mood swings, hot flashes, joint & muscle pain, and recently just had lab work that showed a positive ANA Titer for lupus (currently having more testing). I can complain all day but I have a 4 & 2 year old that relies on me. I awake in pain everyday, but I’m here to tell it. It’s hard but I’m starting to understand the meaning of stop stressing and let my body heal. I am currently not working due to the side effects, but I’m here to enjoy life. If I should only have 5, 8, 10 years of life at least I enjoyed it with my family and not stressing at work if I’m going to get fired due to my medication. LIFE, I LOVE IT.

    We are all human beings and there are many things in the world that can cause harm to our body. You never know what may cause it, but people you have to remember humans create the drugs we take and humans make mistakes. Not unless someone does harm to a drug to cause harm intentionally.

    Think of this we are cancer to the world, because we are inventing so many things that are not natural resources of this planet. We want to live forever, but that was not our purpose. Were killing ourselves. Enjoy life and keep pushing for long term life to spend with your family and friends.

  43. I was diagnosed with breast cancer in September 2002. I used to be very healthy before. I had partial mastectomy, chemothepy and radiation. I am 53 years old. I am a college graduate. I was prescribed Tamoxifen at the end of 2003. I have struggled with my memory since. I rarely made mistakes at work before Tamoxifen. Ever since I went back to work after a few months of taking Tamoxifen I started making mistakes and forgetting things at work. I did not use to have a calendar, but now I cannot llive without one, as I forget almost everything I don’t write down. I have saved every calendar since I started taking Tamoxifen, so I can go back and read things that I have done.

  44. I too have had terrible memory loss and after taking Tamoxifen for 31/2years. I also suffer from dibilitating joint/bone pain. I have gone from being a project manager pre 2007 cancer diagnosis to being unemployed. I do not feel employable. Everytime I complain to my onchologist I feel she negates these symptoms saying they are caused by something else. Could I be getting rheumetoid arthritis and dementia coinsidentaly? I use to be a fine strong and smart cabable woman. Now, I have become locked in depression because of all this, lost my marriage, home and confidence. I am embarrased to talk to anyone because I even think that I should not be feeling this way. I distrust getting any real help from the doctors. I suffer from headaches in the last few months and sometimes cannot get out of bed. I wonder what is to become of me and the burden I inevitably will become if I continue going down this path. HELP!

  45. i got cancer in 02 and have ben sick sent i got off tamoxifen i have my bones are allways hurts the dr. said that i gotten osteoporposis and memory loss and i have to have a hysteretomy and that was something that i didn.t wanted i am on 3 pain pill i also have gastroesophagel reflex i cannot work any more i find that tamoxifen made me more sick.i9

  46. I was diagnosed with BC December 2001. I underwent a mastectomy and chemotherapy. I then took Tamoxifen for over 6 years. The main side effects I have experienced from Tamoxifen are memory loss (short and long term), neuropathy in both feet, joint pain and liver damage. Also, I fiind that I can no longer spell as well as I used to, and my handwriting has gotten terrible. I am 57 years old, but feel much older. The neuropathy in my feet is painful, and I have to drive barefooted year-round because I can’t feel the pedals if I have shoes on.

    After I had taken the Tamoxifen, I found an article where several doctors met in Maryland in 2007 to discuss the prescription drugs that were known to cause liver damage. There were 5 drugs discussed and Tamoxifen was one of them. Why was I not warned of the possible side effects of this drug? All I was told was it was an estrogen inhiibitor, and would keep my breast cancer from recurring. I feel like a human guinea pig used to determine just how much damage a drug can actually do to someone.

    I owned a business that catered to cancer patients…mostly breast cancer, as I sold mastectomy prosthetics and bras. I cannot tell you how many women told me how much they hated taking the Tamoxifen, but didn’t feel that they were given any other choice. “Take it or die.” is pretty much what we were all told.

  47. Was on tamoxifen 4 1/2 years. Just went off 10 days ago. Feel and look better already!
    What you are all saying about memory loss and not finding word happened to me too, Also, massive bruising and bloody eyeballs every time I rubbed my eyes. I found my doctor was dismissive of symptoms and she told me to do sudoku. I had big black circles under my eyes all the time. I have lost some hearing in one ear and didn’t think that was related but maybe it is. The whole time I had one toenail separated from my toe. I hope this will resolve now. I have early stage cataracts at age 52. I would never take this drug again. I also thought I would never blog but it is comforting to find others in the same boat. I would like to see the doctors spend some time on this, then they might change their tune!

  48. I have been on Tamoxifen for a little over 2 years. I was diagnosed with stage 1 non-invasive breast cancer and Padget’s. After a radical mastectomy I was placed on Tam. I have suffered with hot flashes that have me thinking I may burst into flames, my sleep is down to 3 – 4 hours per night, I have cramps in my feet that have me crippled at times, I have constant joint pain, swelling of the hands and feet; but I think the worst side effect is the inability to recall names and common words when I am having a conversation. It is like there is a disconnect between my brain and mouth. Some days I can’t even get my dog’s name out of my mouth right. I work with the elderly and I honestly think some days they have better recall than I do. My doctor said the cramps and memory loss have nothing to do with Tam, but I disagree as they only starting after taking the drug. I told him I want him to explore alternatives by my next appointment.

  49. Tamoxifin causes bone loss. It is used to block extrogen. You need extrogen for your bone.
    It also cause cancer to your weakess organ, which can be your bones for some.

  50. I had a ductal gradus I T2 Er+++ PR+++ MIB-1 c-erbB2++ breast cancer operated in July 2011. After that I received radiotherapy 1mo. 6 weeks after the operation I had to start taking Tamoxifen 20mgx1. After three weeks it suddenly occurred to me that my thinking is not normal.
    I am a creative thinker and write books about creativity and human rights. After three months I could not give a comment in a seminar. I decided by myself to stop taking Tamoxifen as I respect my thinking. I am a psychiatrist and need my feelings and thinking intact.

  51. I was diagnosed in Aug 2009 with a stage 11 BC, no lymph involved. I refused chemo, did the oncotype which confirmed my suspicions that i did not need it.They wanted to put me into a chemical menopause but i researched there was only a 2-3 pc benefit and at 38 i didnt want to go down that road. i did the full rads and then went onto the Tamox. Within 6 mths on the Tamox i started to expierence really bad mood wings and PMS which increased month by mth. I was down, i was paranoid and i would snap at the slightest thing. I couldn’t concentrate on anything, and i lost my drive for life. I could not multi task. And when my period was due, even i was afraid of how i would be. Ive been off it for a mth now i did less than 18 mths. It’s a hard choice as i do not want cancer back, but i have to be me! I felt like Tamoxifen had hyjacked my soul. I’m going back to the Dr in August and will tell her. She’s going to go crazy at me but in the end it’s my life, and it’s not worth living if i cant be ME!

  52. I was diagnosed BC (tumor) left breast in Feb. 2011. I elected to be aggressive and proactive and have breast tissue, nipples and areolas removed. Limph node test was negitive. On my first visit to my new oncologist (I am a five year lung cancer survivor, left upper lobe removed and followed with chemo therapy, oh and that was after we found Adrenal gland cancer during the PET scan to prep for the lung srgery “Pheocromocytoma” another story in itself, usually one has six months once found by symptomes, mine was found by accident or Gods intention?) so anyway, my new oncologist, his first words were hi my name is …….. we need to discuss your chemo therapy program………. I said EXCUSE ME!, “sir pls put into writing, with your pen why you think I should risk my like and take myself down for a year, to expose my self to destruction to my immune system, my emotional healt, my financial well being, my life in general and when you are through I want you to sign your name to it and then and only then will I consider chemo therapy. You see I believe I have been aggressive enough and proactive enough thus far”. At that point I was offered a test that would rate, percentage wise the odds of re-occurance of breast cancer, I said well I think that would be a good start as long as there are no negative side effects, it was a simple blood test and three weeks later I was told that there was “good news” that the odds were so low that they would not recommend chemo theraphy, the next advise from the DR was to take one of three drugs to block hormones as I found out that my body still produces trace hormones even having had a complete hysterechtomy in 2001. So I tried one of them and within a week my joints were as though they were 100 years old, I was immobolized (damn near) the Dr. offered me pain meds to which I responded “EXCUSE ME?” no thank you, I just wanted to let you know that I am stopping the drug, the hormone blocker, he said fine and when I saw him three weeks later he offered the second of the three, I tried it and within a few days the pain and immobolization returned, I quit immediatly and called the Dr. to let him know, he said “ok stop and come back in a few weks so we can see where the pain is really coming from”. I quit that med and gave that Oncologist a permanent vacation from me. I have gone with another highly recommended Oncologist, he at least treats me as an equal human being and listens to my concerns to see how his experience may help. I like that so I’ll keep him. He did offer the third drug and that was Tomoxafin, I agreed to try it and have been on it since Feb. 2012. I am on this site for obvious reasons, research as I have noticed some joint pain no where near as severe as the other two drugs caused however when I sit on the floor an go to get up the stiffness and pain is very noticible and it takes me some time to get completely straight and in motion. This is no way for a very active 54 years old vivatious lady to live. I commonly swim 4 to 6 times per week, I start my day in the lap pool at 5:30 am, jacuzzi swim 40 minuets straight then jacuzzi, shower then gratefully go on with my day. I manage property 40 to 60 hrs per week, have a real estate business and manage my own rentals, that I do for work, I give back to my community and help other women progress through challenging times and a better way of living when I can. I love to care for my home, garden, family and friends as well. Did I say I was an active, vivatious lady? Anyway, I didn’t put together the memory loss and challenges with multitasking and meeting my usual demands with ease. I am a positive person by the way and have an awesome spiritual relationship with a power greater than myself! I keep telling myself “I’m going to get back into gear, get in motion”, I now realise that the side effects of Tomoxifin has been the damn wrentch in my gears (my beliefe now). I began talking to my trusted confidants about what my body and my spirit were telling me, “the Tomoxifin is not good for your well being” it was recommended to me to do some research on line as Tomoxafin seems to be cotriversial, so here I am. I have at times forgotton to take the Tomoxafin and guess what was in common the days I had forgotton to take it, right, I felt better and mojo was flowing, this wilted flower had some water and the sun blocker was gone. I have had what I hope to be the last procedure of the reconstruction process last Monday and will see my Plastic Surgeon next Tuesday, I have been blessed with one who has taken his time to progress through the process slowly to insure the best possible results again a coincidence or another blessing. Right another blessing. I have not taken Tomoxifin for the past three days as I just havn’t been able to bring myself to take it. Now I sit and cry reading of the heartbreaking effects this drug has had and the women that still don’t know that they have to be decion makers in their life “INCLUDING MEDICAL CARE” Dr’s are simply people with their experience and their opinion, thats all. We are people with our experience our opinion and guidence with a power greater then ourselves, hopefully. My best of life has been exactly that. Great odds were that the Adrenial Gland cancer would have taken me out seven years ago or when the symptome appeared, and when the symptoms apprear it’s to late. I do believe in miracles and for me each moment, each day is a miracle so I forge forwad with gratitude. I have made a dicision to stop taking the Tomoxifin and let my Oncologist know that at our next visit in a month or so, by then we’ll see how I feel. I don’t like lawsuits, I prefer peace and I do realise that I am responsible to gather information to be able to make informed decions. I wish and pray the best for all. I wish you love. VW

  53. I had memory loss from the use of Nolvadex (masectomy of left breast 1998 followed by chemotherapy and nolvadex ) which contributed to my having to retirer at 60 and so I did not recieve 100% benefits. I continue to have short tern memory loss. I also developed diabeties and foot drop which began with foot problems while taking nolvadex. in 1998. I am a former employee of Astrazeneca. they harassed be while I worked one extra year to get partial benifita I sort help of lawyer and psychatrist. Then at age 70 they droped my benifits because i out lived my reduced beifits.That occured right at the time I had a recurrence of cancer in chest wall. I would like to be part of a class acxtion suit against Astrazeneca.

  54. I am 55 years and has always enjoyed working, running, etc. I was diagnosed with Breast Cancer in my left breast in January 2008. I underwent a double mastectomy in May 2008. I did not have chemotherapy because my doctors couldn’t decide if I needed it or not until one day I was told that it was to late to have chemo and I didn’t need it anyway. I was put on Tamoxifen immediately after my surgery and was on it for 2 years. As soon as I started taking the Tamoxifen I started to experiencing memory loss (short and long term), and it’s still bad. I can’t remember hardly anything from one moment to the next. Recently I started having Neuropathy in both feet. I can not spell as well as I used to because I simply can’t remember (I know that I know how to spell the words; I just can’t recall it). Sometimes I’m driving and I know where I’m going, but I just can’t remember how to get there. So I just keep driving and trying to remember and some time it comes to me, and sometimes I’ll call me sister or friend. It’s very frustrating.

  55. In 06/2008 at 45 years old with a 5 year old son, I was diagnosed w/ DCIS Breast Cancer. 07/2008 I had a lumpectomy, followed up with mammosite radiation. All seemed to be going very well until my first appt. with Medical Oncologist. I specifically discussed my concerns regarding the many horrible side effects of Tamoxifen, especially strokes, due to family history. He completely brushed off all concerns and prescribed Tamoxifen w/ Wellbuterin. Fortunately, when I tried to pick up the prescriptions my pharmacist informed me that those two drugs should not be taken together due to Wellbuterin negating the effects of Tamoxifen (see Mayo clinic study). Long story short after approx. 2 1/2 years on Tamoxifen which caused high blood pressure, and many other of the known side effects, on 10/3/2010 @ 48 years old
    I had a stroke, followed by a TIA exactly one month later. After many tests my Neurologist informed me that he had no doubt that my stroke was caused by the Tamoxifen. While still in the hospital recovering from the stroke Med. Onc. told me that I had no choice but to remain on Tamoxifen. At that point I chose a new Med. Onc. After studying my case, the new Med. Onc. stated that I absolutely should not continue the Tamoxifen because the risk of another stroke greatly out weighed the possibility of reoccuring BC in my case. Sadly, the damage that both the Tamoxifen and stroke have caused still continue although not obvious to most. Harsh lesson learned, be your own advocate! Nevertheless, I feel blessed to be alive!

  56. Thank god I looked on this page,I thought I was the only one suffering with memory loss and was getting some sort of dimensia About ten years ago I was prescribed tamoxifen after having my breast removed,I went through my periods returming,my womb lining removed for fibroyds,I had to have both knees suringed,cateracts removed and various other thing done that I cant remember,then I got terrible headaches and was sent for a brain scan the results of that was that I had lost some brain cells but not to worry that other brain cells would take over and I would be ok but I was taken off tamoxifen and given arimidex instead.I am now 68 and have very little short term memory,I went back to the Dr and he has put me on a monthly dose of vitamin B12 Please excuse any spelling errors!!!!!!!

  57. For years I have read the side effects of tamoxifen, yet no leaflet has ever mentioned memory loss. However, since starting it, almost 10 years ago (I elected to stay on the treatment) my memory has got worse and worse. I used to have excellent recall and could hold many thoughts and arguments in my mind that I could articulate clearly in meetings. Now I have to write things down and sometimes even forget what I was going to write down! What are the chances of regaining my cognitive skills if I stop the treatment?

  58. I took Femara for almost 3 years and suffered/still suffer from joint pain, sleeplessness, memory loss, tingling in hands/fingers, glaucoma in both eyes etc. I did not have any of those problems before taking Femara. I took Femara after cancer surgery and I also took antidepressants. My hot flashes were horrendous while on Femara but they are not as bad now. I stopped taking Femara 3 years ago.

  59. Hi,

    I know the frustration all u women are feeling. My mom has been experiencing many side effects similar to yours. She has been on it for 3.5 years and has had major life changes, that I feel are also from the Tamox. She was on No other drugs when we noticed changes in her memory, mood, horrible lack of sleep, increase in blood pressure until we had to hospitalize her. The doctors said that she put herself in a dementia like state but I do not agree! When I approached several doctors no one would agree that it may be this drug. My mom was so active for her age, always walking, happy and now she has lost her ability to be independent, drive, take care of herself, and I don’t believe it’s dementia!!!! I am ready to go for another doctors opion because I can no longer see my Mom at this horrible state! When I suggested that her dose even be reduced her current doctor wouldn’t even think of doing that! Just ridiculous how some doctors are more concerned with their stock than the lives of their patients! I am very outraged that so many women have similar experiences and nothing has been done!!

  60. I have been on Tamoxifen for 2 1/2 yrs. I am 46 years old and my memory is horrible. I have had 4 jobs this year and I have been fired from 3 due to my poor memory. It is very difficult for me to comprehend new things. I get distracted and cannot concentrate. I cannot multitask. I am an Administrative Assistant and Receptionist and sometimes when I leave messages for people I sound like an idiot. Before cancer and taking Tamoxifen I was very intelligent, but my cognitive abilities just seem to be getting worse. The longest job I have held has been 3 months during the last 2 years. I hope things will get better after I stop taking the Tamoxifen although my dr. wants me on it for an extra year. It’s so frustrating and embarrassing. They tease me at work and I just laugh it off.

  61. My sister was on Tam for over 5 years. Memory loss set in soon after she began taking it. Since then she has lost her job, had to retire early, and is fearful looking for another job due to her diminished mental capacity. There are too many comments relating to memory loss and other extensive health problems for this to be brushed off by doctors.
    Quality of life has been lost for so many who have been on Tam, and it seems like the Pharmaceutical companies and doctors are not ready to give up the big bucks even with all the harm it has done. Please let me know if anyone knows of a lawsuit for this crime.

  62. I have been taking Tamoxifen for a little over a year and have just about every symptom you an even think of …, as I’m typing it is very hard to spell and just think ….I am 48 and have a 10 year old daughter to raise…so nowit’s been about a year after my radiation and I am going to ask my doctor for other options…if have a choice. I don’t have a kind word to say about this drug…

  63. I’m 40 years old and have been taking tamoxifen for 5 months. I returned to work 3 months ago, and am really struggling – my mind just doesn’t work the way it used to. I can’t multitask, I can’t remember anything, it takes me a considerable amount of time to draft emails, and I’m often at a loss for words. In turn I’m stressed out and frustrated with myself, and don’t want to jeopardize losing my job. It’s a constant feeling of being a step behind if not completely unprepared which is the exact opposite of the way I used to be.

  64. in 2011 after a double mastectomy,chemo i started to take aromasin,shortly there after stopped with that due to the side effects because of the joint and bone pain, then on to a new drug which name i forgot, i do remember that it turn in to this hostile woman ready to kick butt, than my doctor said only tamoxifen was my last drug to take, not wanting to shorten my life and believing my doctor blindly i took tamoxifen for almost 8 months before having a bilateral blood cloths in both lungs and 1 in my left leg. i am now on coumadin,a year later and have feelings that i have lost half of my mind, have trouble staying on top of my job as a small business owner my forget fullness became so bad that i needed to hire a manager to take over most of my job and at 59 feel sick 85% of the time and the doctors think that i am going nuts and don.t they do love to push pills and i keep refusing them for obvious reasons, they don’t understand why i am so angry that i want to kick butt. On the day that i had my blood cloths the md in the emergency room said you are the 3rd woman this week that is taking Tamoxifen and have blood cloths. Antone else running into those problems?

  65. I was diagnosed with Dcis in 2009, had my lumpectomy and radiotherapy no chemo. I started tamoxifen shortly after. It was at this point that my back and legs started to ache a lot, but I just thought it was due to my recovery. About a year later I started having the odd strange bleeds, like I was having a period, So on my next visit I did express concern and a barrage of tests and ultra sounds followed. The Gyno oncologist said I did have a thickening of the uterine lining, and I was to go for a curette. They said it was most likely nothing and this was just routine. Low and behold, I now had uterine cancer. So, I am in that small percentage ( they say its a small percentage) to have the side effect of endometrial cancer. They didn\\\’t want to link it to the tamoxifen, and brushed over it. I have also noticed memory loss, and as most of everyone on here the aches…..I do want to be a part of any class action for this drug, it\\\’s been a nightmare….

  66. I started taking Tamoxifen in 2006 following a left breast mastectomy. I noticed memory loss – being unable to find the word, but assumed I would return to normal after I had taken the prescribed 5 years of treatment. I also experienced a significantly lowered libido and floaters (with flashing lights) in my eyes.

    I didn\’t realize the following symptoms might be related to Tamoxifen, until I read the testimonials above, but since taking Tamoxifen, I also experience joint pain, high blood pressure and the inability to get a full night\’s sleep.

    None of these symptoms have abated since stopping Tamoxifen in November 2011, after 5 years of use.

    I am a teacher (I substitute teach since moving from California to Oregon). I used to teach young adults how to be teachers. Now, when I sub, I have the hardest time figuring out the primary teacher\’s curriculum, even when that teacher has left detailed lesson plans for me, that I study for 1 to 1/2 hour before beginning class. Where I used to be accomplished, I now feel like an idiot in the classroom.

    I am also a writer. I have a tremendously difficult time finding the word(s) needed for the process of writing stories. I hold the idea in my head, but cannot express it. I often have to ask my husband, \”What is the word for when you ….?:\”

    I finished grad school last year with a Masters of Arts in Teaching. I had a extremely hard time learning new vocabulary. I got the concepts, but absolutely could not recall the one word that would encapsulate the concept. Having gotten through my B.A. and Credentialing Program with ease (pre-cancer), I felt like the dumb kid in class during the entire Master\’s program. On our last day in the program, we were asked to tell something about ourselves that no one knew. I confessed my Tamoxifen-head condition and said that I often felt like the dumb kid in class. The instructor and peers said they didn\’t notice my struggle, because I was well versed in the concept. They did notice I talked a lot – explaining, rather than saying the one vocabulary word that would have painted the whole picture.

    I try to compensate for my disability, and even though some people don\’t know I now have one, I cannot get hired, except as a sub.

    I want to be part of a class action against Tamoxifen. I was told by my oncologist, \”If you were my sister, I would beg you to take it.\” Had he not said that, I probably wouldn\’t have taken it. I was told it had been around for years and was safe. I feel like it robbed me of my potential.

  67. I was 37 years old when I found out I had breast cancer in 2003. I had a lumpectomy on my right breast , 4 rounds of chemo , I was suppose to do 6 rounds of chemo but It made me too sick, I did 33 radiation treatments and then I had to take tamoxifen for 5 years finishing it in 2008. During the time I was on tamoxifen my doctor prescribed paxil because I was going through terrible hot flashes. I\’m 47 years old now and my memory is terrible , I see people in a store or some place and they stop and say hi, i\’m horrified because I can\’t remember their names and sometimes I don\’t remember them at all but they all know me. Many times at work I anwser the phone and if I don\’t write the message down I can\’t remember who I was talking to. At times I will be talking and I stop in the middle of the sentence because I forgot what I was saying. I will clean the house and put things away and later my husband will ask me where I put something he was looking for and I can\’t remember. I was never like this before I took tamoxifen I always felt like I was sharp and clear. I also have floaters in my eyes which impairs my sight this never happened before the tamoxifen. I\’m glad I found this site becuase now I know I\’m not the only one out looking for the answers to this horrible drug. I would also like to be part of a class action against Tamoxifen because it took my memory and I\’m only 47.

  68. I was on tamoxifen for five years. In 2007 I was diagnosed with dcis of the left breast which turned out tobe invasive cancer. Lympnoids were removed and I had a mastectomy left side. My period stopped whilst on tamoxifen. I was soaked in sweat at night. Had hot flushes swollen fingers and toes plus on blackened toe nail which remained so til off tamoxifen. I also had lots of trouble remembering my friends childrens names and pop groups and actors could see there face knew the film but name wasnt there. Drove past my friends turn towards her house laughed it off as old age (55) so embarassing. Blood vessels burst twice right eye covered in blood shot at begining of 2013 just off tamoxifen seen ophamologist said eye was fine. I visited same place twice in same year 3 months appart and forgot I had been previous time- remembered shortly afterwards. Still have flaters in eyes and eyes water a lot. One year on from tamoxifen my period has started visited doctor waiting on appointment – worried because too painful when smear had to be abandoned end of year. To have ultra sound hoping not cancer of the uterus as I have already experienced mood swings from hormonal changes would hatevto have hysterectomy.

  69. I went through breast cancer 2011, had a lumpectomy and a savy unit placed inside me for radiation, then took tamoxifen. I ended up tyring all of the possible medications for the her 2 positive cancer I had. I have lost my memory and my job. I have had surgery on one trigger thumb and have fingers triggering on both hands now. I feel like someone should have warned me about the tamoxifen and other like medications. I went off them to try to keep my job of going on 15 years but it was to late. They eliminated my position. I can’t keep thoughts in my head and I get confused easily. My memory is gone. My unemployment is running out and I turn 54 this Wednesday. I am cancer free which is great. I don’t mean to whine. I am just lost.

  70. From 2007 to 2012 I took tamoxifin due to having breast cancer, since then I have noticed a severe decline in my memory, have had to have a partial hysterectomy due to fibroids and something else i am unable to recall. I have also had joint troubles and ovary trouble. they couldnt take my ovaries due to me being unable to take hormone therapy…I also get confused easily.. they great thing is ive been ccaner free for the past six years!!

  71. the main problem with tamoxifen, for me, was the ruined eyesight. I always had eagle eyesight and could spot an ant across the street. I am disabled and made jewelry to help pay some bills and survive. I closed many thousands of those very tiny jump rings with the naked eye and never once used a magnifying glass. as soon as I began taking the tamoxifen I noticed that prices and sizes on tags were blurry and I could not see the ingredients in food items. I never needed glasses and had perfect eyesight. I had actually gotten rid of many magnifying glasses (they were my mom’s) as I had no use at all for them. the one pair of glasses that Medicaid covered were made incorrectly so I have to wait a full 2 years to get a correct pair (that means in October of this year I can get a new prescription pair of glasses). I’ve been using reading glasses. words are blurry. I can’t see how to close the jump rings any longer. the optometrist told me he’s seen so many women who use/used tamoxifen with the same side effects. I got off of this deadly medication when I could no longer feel my legs and was at a very high risk of blood clots. my legs were just numb. after I got off this medication the numbness below the legs started to improve immediately but the eyesight has gotten a bit worse. if not for this medication I would not need glasses, plain and simple! I’ve had memory problems and can’t remember names, words, titles and such. I didn’t know this also was a side effect of tamoxifen until I just read it today. I’ve told these problems to medical professionals and friends and I am very frustrated over it. I hate tamoxifen! it’s a killer medication. I was on it as a precautionary procedure so it did not cure me but rather it caused other problems to occur. I’m so sick of medicaitons making people worse off. please call me if you can help me with a lawsuit against this medication. the side effects outweigh the potential good it can do. I’m very depressed over the problems it did give to me. I do have lots of leg pain now and for all I know this could still be attributed to using tamoxifen. I feel the poison I was forced to put in my body will linger for years and it terrifies me.

  72. in August 2013 I had a mastectomy at the age of 45. I was put on Tamoxifen and since then I have had severe paranoia and my eyesight, like Emily (above), has been blurred all the time. My eyesight was fantastic until then. I have the usual hot flushes (which are awful) and memory loss, but the paranoia and blurry vision really get me down. I went diary free in August as well, so wonder if I could come off the Tamoxifen, as I’m doing it through diet?

  73. Oct of 2000 I was diagnose w/ BC. I had a 3 yr old & 16 month. I was 33 years old & scared to death. My husband had 9 months til military retirement and he was in Mo, I was in OH. My first chemo was the day before my 3yr old’s b-day. I had a lumpectomy, chemo, rad & then Tamox. I’m so proud of my family. With God, church & family help we made it thru. We now have a healthy 5 yr old blessing!! I AM HERE TO TELL YOU THE COG ISSUES & MOOD SWINGS HAVE NOT GOTTEN ANY BETTER! If anything they continue to decrease but at a much slower pace. I only stayed on the Tamox 2 1/2 years, then took myself off, against drs advice, because of them. I had little ones & my moods were disruptive & frightening to say the least. My mother retains info better than me and she is 77, I am 47 now. I no longer have the issues I did on Tamox, but my cog abilities never returned to normal. My older kids & husband also complain of my hearing (lack of), I haven’t had this tested yet. Even today, after 13 YEARS OF SURVIVAL, my drs STILL don’t want to admit it was the Tamox. They have talked about ADD, Pre-dementia (if there is such a thing), I have had numerous brain scans, MRI’s and tests. I plan to copy as many research findings on Tamox as I can find & give them to my PCP. This doesn’t just affect us, but our families. How many of you have a spouse/mate & children who are affected every day by your memory lapse, lack of focus or mood swings. I can’t tell you the times my husband has walked away in frustration over my forgetfulness. Thank God for loving families & friends.

  74. I had BC in 2005 and had a mastectomy. I was put on Femara for 5 years then I had a breast reduction on the other breast in 2012 and they found cancer in the nipple only and I was put on Tamoxifen. Since being on tamoxifen for two years, I have had terrible memory loss, can’t put a sentence together sometimes or think of what I wanted to say when carrying on a conversation with someone. I have neuropathy in my feet and hands. I have hot flashes and my legs have pain in them all the time. Its worst at night when I try to sleep.

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