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Tamoxifen Side Effects Can Hamper Memory, Cognitive Ability: Study

  • Written by: Staff Writers
  • 77 Comments

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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77 comments

  1. Danny Reply

    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!

  2. Val Reply

    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

  3. Lucille Reply

    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.

  4. Peggy Reply

    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.

  5. Sherri Reply

    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!

  6. Margaret Reply

    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!!!!!!!

  7. Amanda Reply

    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?

  8. Cindy Reply

    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.

  9. Lisa Reply

    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!!

  10. Tara Reply

    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.

  11. Vickie Reply

    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.

  12. Carol Reply

    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…

  13. Melissa Reply

    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.

  14. Bartha Reply

    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?

  15. M lupien Reply

    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….

  16. Sandra Reply

    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.

  17. Kimberly Reply

    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.

  18. jaleo Reply

    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.

  19. Nancy Reply

    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.

  20. Lois Reply

    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!!

  21. emily Reply

    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.

  22. Ali Reply

    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?

  23. Benitta Reply

    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.

  24. Judy Reply

    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.

  25. Sandra Reply

    I am 49 years old and in January 2004 at age 39, I was diagnosed with breast cancer in my right breast and had a modified radical mastectomy. I had the chemo and radiation therapies. My doctor had me to take Tamoxifen and told me I would have to take it for 5 years. After I started taking it, I started to experience severe leg pains in both legs, it hurt so bad just to walk. I talked to my oncologist about the constant leg pains and I told him I did not have this leg problem until I started on the Tamoxifen. He told me to stop taking the Tamoxifen because “it was probably doing more harm than good”. I also have problems with my vision.

    I started having problems with memory, I could read something and the next minute could not remember what I just read. I started having problems on my job but did not let anyone know because I was a manager. We have to constantly take tests to stay certified and I was failing each test. I would study but when it came to take the test, my mind was completely blank. I had gotten to the point where I dreaded going to manager meetings because I could not remember what was said in the meetings. When I would have meetings with my staff, I could not remember what was said and had one of the supervisors to start taking minutes so I could refer back to what was discussed. By the way I am no longer employed.

    Even now after all these years I am still forgetting a lot of things and forget how to get to my doctor’s office and was going there every week. I just have a lot of problems with remembering things, it just goes on and on of a lot of the things I have forgotten. I was taking groceries out of my suv and went in the house to sat the bags down and to go back outside to get the rest of my groceries. I simply just sat down and started watching and completely forgot the other bags. My neighbor called later and told me I had left the trunk up on my vehicle and still had grocery bags in the suv.

    I have tried talking to my doctors about these problems and they just brush it off like I am crazy or something but I know better. They had me to take these cognitive tests to rule out any memory issues and they say I passed, but I don’t think so. My head hurted for days after taking those tests. They all tell me nothing’s wrong and that “I am too educated and intelligent to be going through this”. I said this happens to the best of people. I have also tried to hide this from my family because they feel the same way as the doctors. But it’s hard because I have to be strong for everyone else and it’s just not fair. I have even stepped down from positions in my church because I could not remember things.

    This has been a downhill spiral for me and don’t know what to do.
    It took forever for me to write this comment. I normally could come up with something right away but even this is hard trying to put words on paper.

    Something has to be done about this drug. I would also like to be part of a class action against Tamoxifen because it took my memory and my quality of life.

  26. Carrie Reply

    I took Tamoxifen for exactly two years. I tried to go off a few times because of the debilitating and traumatizing side effects but during the horrid withdrawal I would have serious tumor progression. During the two years I gained about 25 pounds, had memory loss, bone pain, hot flashes, headaches, anger and depression issues, and thankfully I’m forgetting the rest of the awful side effects. I asked my oncologist a few times to let me off the drug and complained of the side effects. He would just say, “hmmm….that’s interesting. I’m not sure that’s from Tamoxifen.” After I started wishing to die, I urgently told my oncologist and nurse I had to go off Tamoxifen. I was told “The doctor will not be happy if you go off it.” Well, I was already feeling all angry and crazy on Tamoxifen so I let it show which seemed to freak out the nurse. I made sure she understood that I didn’t give a ____ about the doctor’s happiness. She twice told me about how the doctor was unhappy about me not wanting to be on Tamoxifen. Seriously?! Get over your cancer industry ego, please. My cancer progressed tragically the last year on Tamoxifen as well and the doctor admitted that he wasn’t sure it was working for me. Genius. Yet he refused to let me off the drug. I’m not sure why a doctor would force a patient to stay on a drug that was seemingly causing the cancer to grow out of control. I went off AMA and left that doctor. It’s been 10 months off and I feel like I’m still healing from that mess.

  27. michelle Reply

    I have had breast cancer and took Tamoxifen for two years and started having bad memory loss and was put on Famara and started having heart paputations and had to have triple bypass I do not know if the meds caused it but I never had heart problems before then I was put on arimidex and started having difficulty with sever pain in my hands and legs will this get better ? do not know what else to do.

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