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Endocrine Therapy Side Effects – Your Input Requested!
Endocrine Therapy Side Effects – Your Input Requested!
By: DrAttai
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Apr 13, 2013

A bit of crowdsourcing help, please! I’m giving a talk at the upcoming The American Society of Breast Surgeons Annual Meeting – the tittle is: “Endocrine Therapy Side Effects and Treatment of Side Effects- What the Literature Says, What Your Patients are Saying”

Long title, I know! But I’m going to cover the reported side effects of tamoxifen and the aromatase inhibitors (arimidex, femara, and aromasin) and also what the literature reports as effective treatments.

Any physician treating patients with breast cancer knows that there are MANY side effects that get reported to us that we don’t read about, and that there are many things patients find effective for managing those side effects that we don’t have good evidence for.

Anyone comfortable with leaving your thoughts here, please do. No one will be mentioned by name or will be identified in any way – I’m interested in the side effects and remedies only. For those not comfortable leaving the information publicly, please email me: info@drattai.com – this email goes to me, not my staff, and as soon as I get the information I need, the emails will be deleted.

Thank you all in advance for your help! After the talk, I’ll post the slides.

Comments

Nancebeth

Date: 13 Apr, 2013

I took Tamoxifen for 2 months in 2012. The side effects were too much for me and when I weighed the pros and cons I decided that my quality of life was worth more than a few percentage points. I had severe joint pain, bad enough that some days I had to crawl out of bed to the bathroom. Theheadaches were intense and blinding pain. The sweats were so bad I had to keep a change of clothes in my car at all times because I would sweat through whatever I was wearing. I also noticed a personality change. I had what I called "murderous rage," but my oncologist liked to call irritability. Ha! He didn't live in my world. It was murderous rage. So, I stopped for a few days with my oncologist's blessing, to see if it was for sure the Tamoxifen making me feel badly, or maybe some residual chemo side effects. It was the Tamoxifen, so I was done. Here is my blog post about it: http://www.breastcancerbattlescars.net/2012/11/tamoxifen-is-my-nemesis.html

Diana

Date: 13 Apr, 2013

I have been on tamoxifen since December 2011 and I was 31 years old when I was started on it. It's difficult to separate the side effects from previous treatment (chemo and radiation) and I've never stopped the tamoxifen to assess this. My side effects are pretty numerous: joint and muscle pain, hot flashes and night sweats mostly just during my period, serious hair thinning, sleep disturbance, weight gain and intense mood swings akin to constant PMS. Overall it hasn't been a very pleasant experience. I'm planning on taking a hiatus from it as soon as my oncologist is happy for me to do so, so that my husband and I can try to conceive, though admittedly I'd just be happy to be rid if some of these symptoms! Hope this helps, I for one really appreciate your interest in patient feedback on treatment side effects.

Lori

Date: 13 Apr, 2013

I am one of the lucky ones... No side effects that were bad enough to warrant stopping the tamoxifen. I did one round of 5 years then was put back on it when I metastasized years later. Both time I experienced weight gain (a LOT the first time... Hopefully I'm doing better this time). I experienced suppressed libido and vaginal dryness to the point that set is quite painful. And I have some cognitive challenges that weren't there before. I had chalked it up to "chemobrain" but when it returned with a vengeance when I went back on the drug I now think tamoxifen needs to take some of the blame. Hope this helps... Thanks for translating our real challenges back to the medical community!

DrAttai

Date: 13 Apr, 2013

Thanks so much to all for sharing your experiences! I will post the slides after the talk.

Pat

Date: 13 Apr, 2013

I took Arimidex (generic) for three months, beginning in August 2012, following chemo and radiation for stage one breast cancer. I developed pain in my wrists and was told to stop taking the drug. Then I was to wait 55 days for it to clear out of my system. But I still had wrist pain. My medical oncologist said that the pain could not be from the Arimidex so I should see my regular doctor. She diagnosed tendinitis and put me on prescription ibuprofen and told me to wear wrist splints. This was in early February. My pain has lessened, but is still there to some degree, especially on the right-hand side. I'm wondering if I might have a cyst on that side.... I have searched for information as to whether this is a possible side effect of the medicine, even though the oncologist says no, and cannot find any info. Don't know if this will help you but I will be interested in seeing whether you have any similar comments.

Liza Bernstein

Date: 13 Apr, 2013

I have had three primary Breast Cancers. Each was ER positive. After my second primary, in 2005, I agreed to go on Tamoxifen, starting about a month after completing radiation. At that time, I still had an active infection in the surgery site (from lumpectomy 6 months prior); I was still healing from the open wound/burn caused by radiation, and I was in very poor shape physically, emotionally and spiritually. Ironically, at diagnosis in March 2005, I was the fittest, leanest, healthiest I had ever been, with an athlete's resting heart rate, and I have always been a "tough" person with a high tolerance for pain. So, when I began Tamoxifen, I was very much diminished. Immediately, I got terrible headaches (they went away after a month or so), and yes, I would get "hot" but nothing too extreme. That, I could live with. Very quickly though, I went from having very little energy to having none whatsoever. My mind became completely and utterly shrouded in clouds of dense fog that every now and again would thin out, but only for a second or two. I began to have recurring nightmares where I was trying to walk (never mind run!) and could not lift my feet, and when I would try to call for help, if I could find the words, they would come out in extreme slow-motion. I described it as feeling like I was constantly underwater, walking uphill, against a strong current. I have always had a sharp, wicked-fast brain, especially with words and concepts. That all turned to blubber. I would blank out, could not find the words/terms I needed to express myself, and to make matters worse, it constantly felt like I had those words at the tip of my tongue but could not summon them.... So there was an almost constant state of distress, anxiety and dismay. And fear that I would be like this forever. Many days, I did not feel safe to drive. Meanwhile, I was busy trying to get my life back together after this second cancer, was searching for work, and living alone with nobody to take care of me. At the time I used to joke that I could certainly carry on like this for 5 years (usual course of treatment with Tamoxifen) if I were independently wealthy and had a staff -- a chauffeur, a chef, etc. to take care of everything. But even if I had been living the Downton Abbey lifestyle, it would have been unbearable and I wouldn't have been able to consider continuing to exist like a zombie. I toiled along for a year, and finally, after a detailed conversation with my oncologist, she agreed to give me a month off, just to see. Immediately I began to feel (only a tiny bit) better, and we prolonged the drug holiday. As I continued to improve (still only at a snail's pace) she finally recommended that I stop taking Tamoxifen as it was having such a severe impact on my daily life. I was and still am extremely dismayed and angry that Tamoxifen is not viewed by many as a drug whose side effects can be as serious and impactful as those of chemo. I have done chemo, so I know of what I speak. Chemo is brutal, devastating, yes. BUT, for early stage Breast Cancer, adjuvant chemo is not something you have to do for 5 years. I am saying this because when I was done with "treatment" (i.e., radiation) for my second cancer, I had exhausted all my savings and resources and could barely afford my rent and health insurance premium, never mind medical bills. I reached out, for the first time in my life, for financial aid, and was told that Tamoxifen did not qualify as "cancer treatment" by organizations that offered to help cancer patients going through cancer treatment. So, if I had not spent my own money when going through what these organizations termed "treatment" and asked them for help then, maybe I would have had some left over by the time I was dealing with the side effects of Tamoxifen?? If I had been able to continue the prescribed course of Tamoxifen, I wonder if I would have developed a third primary. I will address my third primary in a separate comment. When Tamoxifen has side effects like these, you don't look sick, you are not bald, your blood counts are fine.... your suffering is invisible and you are very, very, very easily dismissed. Please shed light on this and help us. Thank you for reading, Liza Bernstein

Liza Bernstein

Date: 13 Apr, 2013

By the way, the nightmares I described were nightmares, but they also were expressions of what many of my waking hours felt like.

DrAttai

Date: 13 Apr, 2013

You may want to consider seeing a hand specialist? It's well out of my area of expertise and I have not heard similar comments, but if the pain is persistent, I think it's worth getting it checked out.

DrAttai

Date: 13 Apr, 2013

Liza - thank you for your comments, and I am so sorry for all of your pain. One of my goals in giving this talk (although it was not in the talk description that I was given) is to help educate physicians, especially those that may not be asking detailed questions about side effects, as well as to reinforce that these drugs are toxic and do have side effects. If we (as docs) don't ask, often we won't know, and then we can't help. Thank you again for sharing your experiences - I know you will make others realize that they are not alone.

Julie Gralow

Date: 13 Apr, 2013

Powerful messages here. While endocrine agents unequivocally reduce risk of recurrence, we frequently underestimate their impact on quality of life and overall functional status. I don't think this was taken into account in the USPSTF draft recommendation on using these drugs for chemoprevention. See the "potential harms" section: (http://www.uspreventiveservicestaskforce.org/draftrec4.htm). You can comment on this proposed recommendation until May 13th).

Nancy's Point

Date: 13 Apr, 2013

I'm on Arimidex and I hate it. I have gained weight, probably 15 pounds since starting it and yes, I do exercise and try to eat healthy, though of course, I could be doing better. On top of the "less important" side effect like thinning hair, what bothers me most is joint pain and I also have experienced what I consider to be a pretty significant negative impact on my bone health. Despite the "hit" my bone health has taken, my oncologist wants me to stay on it, and I'm trying to do that, but we'll see. I'm usually asked, "Well, are the side effects tolerable?" which is a sort of a loaded question. More tolerable than a recurrence, of course, but... Anyway, thanks so much for offering an opportunity for us to offer some input. I do feel the side effects are too often brushed aside. I'm not at all surprised that many patients choose non-compliance and stop taking these meds. Good luck with your talk and thank you again!

Stephanie Zimmerman

Date: 13 Apr, 2013

Dr. Attai Don't know if you're interested in the young adult survivor of childhood cancer and their endocrine late effects and effective management strategies of SE's; however, if you are, I would love to introduce to Lillian Meacham, MD [Endocrinology] Director of Survivorship at Children's Hospital of Atlanta. Stephanie

Elyn Jacobs

Date: 13 Apr, 2013

I went on Tamoxifen reluctantly March 2007. By Septmeber of 2008 I could not sit without great pain and could only walk if I dragged one leg. This proved to be a two year journey. Was it the Tam, cannot say, but it was timely...the joint pain was horrific. I also ended up with accute glaucoma in both eyes and had surgery for this. Was it the Tam? maybe. I also developed an terrible and lasting cough (over six months). Was checked for lung cancer, asthma and gerd---none of which seemed likely to me. Oncologist said inflammation and by upping my food-based anti-inflammatories and stopping the TAM, the cough went away...that one was the final straw....was it Tam induced? Who knows. Tamoxifen is not a drug to be taken likely; the side effects go way beyond quality of life. Thank you Dr Attai, this is a great project.

Lisa Ellis

Date: 13 Apr, 2013

I've taken tamoxifen, Arimidex, and Aromasin. I've also had significant side effects with each drug. The worst part is that the side effects were minimized by my oncologist. Tamoxifen: I had the worst case of what I call the blah de blahs while taking Tamoxifen. Life was grey and I had to force myself to do anything other than sit on the couch. My oncologist wasn't concerned after I told him that I wasn't crying. I also had joint pain, particularly in my hips, knees and ankles. My oncologist dismissed the joint pain, saying it wasn't a side effect. After two years, when I was post menopausal, I started taking Aromasin. Aromasin: My hip pain got worse. I developed trigger thumbs and arthritis in my hands. I saw a rheumatologist, got cortisone injections and started taking celebrex. My new oncologist switched me to Arimidex. Arimidex: I developed cataracts within a month of starting Arimidex. My OD said I didn't not have cataracts when I saw her four months previously. My oncologist said she had never seen that side effect before. My PCP said cataracts are a rate side effect. I had cataract surgery (both eyes). After talking with my oncologist, I decided to continue taking Arimidex as I couldn't develop cataracts again. While I was taking tamoxifen, my bone density increased significantly. It has gone down since I started the AIs. It is still normal, but I worry about osteopenia. That is the major reason I will limit hormonal therapy to five years. Also, I had a hip replacement a year ago. I may have needed one anyway, but I do think all three drugs caused my arthritis to progress more rapidly than it would have otherwise. The problem as I see it is that these drugs lead to premature aging. I hate taking them, but see them as a major part of my cancer treatment, bring down my chances for recurrence to a tolerable level. Damned if I do, Damned if I don't applies, in my opinion.

Lisa Ellis

Date: 13 Apr, 2013

Oh year, I totally forgot: My libido has been non existent with all three drugs.

Holly

Date: 13 Apr, 2013

I was diagnosed with Stage IV MBC ER back in December of 2001. After a year of chemo and radiation which put me into remission finally, my oncologist prescribed Arimidex. I only took it for a couple of weeks because I was having allergic reactions to it, so I have no other anecdotes about that. My oncologist changed my prescription to Femara, which was still a fairly new drug at the time. It was originally recommended that Femara only be used for two years and later it was changed to five. However, despite some rather painful and debilitating side effects, Femara seemed to be working so well for me--I continued to take it long after the five year recommendation had come and gone. Since no one knows why I have been able to survive the MBC for so long, the feeling about the Femara was that as long as I could handle the side effects, I would remain on it until there were reasons for me not to stay on it. The "if it ain't broke--don't fix it" philosophy. My doctor and I only stopped it this past September (2012) as it seems as though it had built up in my body for so long that I was suffering with stroke symptoms that were getting increasingly worse. I had already been diagnosed with a rheumatic heart years before my cancer diagnosis, so it's not clear whether Femara can be solely held responsible for the aphasia, severe dizzy spells and nausea I was having. At this point in time, I still have no current signs of cancer or any further mets other than the original ones in my pelvic bones, since I went into remission in 2002. I have not had any more of the stroke symptoms since I stopped taking the Femara. As for side effects that I have had on and off for the past 10 years, I will have to say that weight gain, hot flashes and severe lower back pain and constant joint pain at various points, have been the most difficult ones for me to bear. I've also had the brain fog, the cramping of my hands and feet, problems with my eyes, such as blurry vision, constant tearing, which later changed to dry eyes instead and dry skin all over. None of the side effects other than the weight gain, hot flashes, severe lower back pain and constant joint pain lasted through the whole period of my dosage. Now that I have been off the Femara for nearly 6 months, the weight gain is still here, but the hot flashes and the severe back pain have lessened. The joint pain is still just as severe though. However, I have a few cautions about attributing any of these symptoms to Femara alone. First of all, I have learned that many of these symptoms can also be attributed to lack of estrogen in a woman's body, which means to me that the Femara was successful since that was the primary reason for taking it in the first place. I've also been on certain heart medications this entire time since my cancer diagnosis. I also had monthly Zometa infusions for 5 years, which was later changed to twice a year. I have Faslodex injections monthly, which I have been getting for 6 years. I never had a mastectomy, although it looks like I have, due to the progression of the cancer and then shrinkage of tissue from the chemo and the radiation, so I've never had problems with lymphedema. As far as the lower back and joint pain goes, I attribute some of that to the fact that while the radiation stopped the mets in my pelvis, it also caused the bones there to be misshapen ever since. I'm nearly 60 years old with a family history for arthritis. I would likely still be on Femara, if not for the possibility of stroke due to my heart disease.

Chandra

Date: 13 Apr, 2013

I've been on anastrozole since April 2011 (stage 2 DCIS; mastectomy, Oncotype DX recurrence score of 4 so no chemo or radiation). I developed trigger thumb on the left about a year ago, which is a documented side effect of endocrine therapy. Rather than having surgery--as a musician, I was leery--I started taking 6g of MSM (methylsulfonylmethane)/day, suggested to me by my myofascial massage therapist. I'm also leery of supplements in the US, which are largely unregulated, but since my therapist generally does not suggest supplementation, I tried it. Sure enough, the trigger thumb resolved. I should mention that it was clear to me the trigger thumb was related to my endocrine therapy because after I stopped anastrozole for several weeks, the thumb was better. I started again; it was worse. I switched to exemestane, thinking the different mechanism might help. It did, but the weight gain and other side effects were weighty. I switched back to anastrozole and kept taking MSM. The trigger thumb fully resolved after several months.

Liza Bernstein

Date: 13 Apr, 2013

Dr. Gralow, I like the term "overall functional status" as it seems it has the chance to be taken more seriously than mere "quality of life." I know that the studies have been out regarding the effectiveness of Tamoxifen and Aromatase Inhibitors. It's like chemo and radiation. They are effective, we need them, it's all we have..... but at what cost? Can we please hurry up and develop more new and different ways to come at cancer (like Herceptin and Gleevec = targeted therapies)! Pardon my rant! Meanwhile, thank you for posting about the USPSTF draft recommendation being open to the public.

Liza Bernstein

Date: 13 Apr, 2013

Deanna, thank you so much! And yes, I agree, it is so important that those of us who feel we are ok/ready to share this information in a public forum do so. The #BCSM community works for me because I know it is not just about ranting and venting (not that there is anything wrong with that!).... it's about sharing stories, experiences, information for the express purposes of HELPING. and it's a two-way-street: Just seeing the other comments has helped me feel validated as well.

Createjoys

Date: 13 Apr, 2013

Tamoxifen for 5 years. Ungodly hot flashes. Literally 30 to 40 a day. They did get better but still had at least 10-15 a day. I tried adding an anti-depressant to help with the hot flashes. No luck. Joint pain, fatigue, vaginal dryness, and a wasteland of a sex drive all included. Not to mention weight gain and dry skin. And killer muscle cramps in my calves and feet. They would wake me up out of a sound sleep at night. No one believed they were related, but the decreased when I went off of tamoxifen. I was checked for low potassium etc. All were normal. Aromisin- on this for about a year and a half when bc metastasized. Increased fatigue. Hot flashes improved, but vaginal dryness increased. Joint pain increased. Also a general feeling of the "yuckies." I went off of everything for 4 weeks. You forget how good normal feels. You get used to being ok with just not feeling great. Exemestane- felt much better on this, but was only on it for one month as my markers increased. Joint pain went away and less fatigue. Letrozole- I've been on this for 3 months now. Less fatigue. Still have hot flashes, vaginal dryness and loss of sex drive. Joint pain is minimal, but can flare. We don't talk about the sexual side effects enough. They have a huge impact on quality of life. Sometimes I wonder about just not taking anything until things get worse. Right now I have bone mets. I still exercise 5 times a week, work full time and am active. I've gained about 10 lbs. The 4 weeks I was off meds I lost a pound a week. I was 43 when first dx and am now 51.

Createjoys

Date: 13 Apr, 2013

I forgot to add I was on monthly Zometa infusions for a year and for the last 12 months have been getting them every 3 months.

Yvonne Mireau

Date: 13 Apr, 2013

I started Tamoxifen for Stage 1, ER+ breast cancer in September 2007 at the age of 46, and never had a period again (I had a regular, 28day cycle until then). The hot flashes were so severe that I was often cold, sweaty AND flashing in a continuous cycle for most of the day...I seriously thought I would go insane. Blood pressure meds and antidepressants were somewhat helpful for a time, then not at all. Vaginal dryness was so extreme that I bled from wiping myself, and sex was impossible and very bloody. I also developed cataracts, which seems to be a rare side effect, and my night vision became so poor that I no longer drive after dark. When I stopped the Tamoxifen in September 2012 after 5 years, I developed migraines, which seemed to be cyclical, although I'm not menstrual. The migraines were so bad that I considered going back on Tamoxifen! They seem to have eased a bit now.

Elaine

Date: 13 Apr, 2013

I started arimidex in November 2011. Stage 2, had chemo and rads. Postmenopausal, so, arimidex. Right before my Bc dx in late 2010, was dx'd with osteoarthritis in my knee, and i noticed increasing stiffness. To be honest, i can't tell you if the pain and stiffness is worse with the arimidex. I did gain at least 25 lbs during chemo, but have lost it all plus some after chemo, and i continue, albeit slowly, to loose. My mood is good, but i've been on antidepressants and stimulants for anxiety, ADD since before BC. Definitely some dryness, but otherwise ok. After taxol, i had tingling in my hands and feet. This got worse the first few months of arimidex, but slowly resolved. I've also had physical therapy to help me gain strength, and am about to start another round. (I'm having a knee replacement later this year). For me, it's so hard to separate menopausal, post chemo and rads and arimidex side effects. I was so tired, though that has been improving. Fuzzy headed too. But i felt like this was a great opportunity to ask for help in countering the aftermath of the dx, tx. I suppose i could stop the arimidex for a few weeks and see what happens. But the truth is, i don't want to.

lopsided blogger

Date: 13 Apr, 2013

Thanks for asking for our input. I just did a blog post on my problems with tamoxifen. I had bc at 37.5 and did chemo, rads, herceptin. I also took tamoxifen for four years. I stopped a year early because of an extremely thickened endometrium and ovarian cysts--simple and complex. I had these issues throughout my four years on the drug and now, two years off the drug, I still have the same issues. Bloodwork and hormone tests show that I'm nowhere near menopause yet my periods are very sporadic--like two or three a year. When I finally have a period, it's horrific and I'm immediately anemic. Ob/gyns just want to give me hormones, but my bc is ER, PR +. In addition, I feel going this route might force my cycle back to normalcy but it could risk masking what might actually be or become cancer. And if all my hormone levels now are strongly normal, why would giving me more be a good idea, especially since it could spark a bc recurrence? It's clear ob/gyns and oncs don't have enough experience with these issues to really help and that's wildly frustrating. It needs to change. Here's the blog post: http://www.beyond-breast-cancer.blogspot.com/2013/04/you-wouldnt-think-this-would-be-so-hard.html

Karine

Date: 13 Apr, 2013

I was diagnosed with Stage 1 invasive ductal carcinoma and LCIS last year and opted to have a bilateral mastectomy; nodes were negative. In lieu of chemo, I opted to have an oopherectomy and my oncologist prescribed arimidex afterwards. I took it for one month -- the side effects became too unbearable at that point, so I stopped. Hot flashes that went to cold shivers 10 minutes later woke me up several times per night--they weren't too bad during the day. Joint pain and stiffness in my hips and hands/fingers, which is worst at night -- this has not subsided since stopping the med. I now have to take a high dose of naproxen sodium twice a day to help relieve the pain and I am 4 months past stopping arimidex. Fuzzy thinking has also stayed with me as has feelings of depression--I had not suffered from either before. The doc prescribed tamoxifen, but I am not comfortable with taking that either, as it is listed on the World Health Organization's list of known carcinogens (causes uterine and liver cancer). My Oncotype DX risk of recurrence is in the upper low range at 17, so I don't feel the tiny percentage I would gain by taking tamoxifen OR arimidex is worth the decrease in quality of life. I am only 46 years old.

Christina Hatt

Date: 13 Apr, 2013

After a mastectomy and subsequent metastasis to my liver and upper chest, I was put on Femara in October 2009. I decided to stop taking Femara in February 2013, because of the side effects, which are: hot flushes, pains in all my joints - making me feel like a very old lady. Stomach upsets, nausea, loss of appetite. Weight gain, depression, migraines, dizziness, muscle pains, fatigue, bone thinning, urinating more often. Terrible anxiety, irritability, nervousness, losing my temper quickly, despite being a very calm person, panic attacks (and I have been a yoga therapist for 35 years, so this shouldn't happen to me!) Difficulty in sleeping. Horrible taste in my mouth, foul-smelling faeces, dark urine. Eye problems - blurred vision, eye irritation, dry eyes, now loss of 80% sight in left eye - was fine before. Palpitations, fast heart beat, breathlessness. Dry mouth, very dry skin despite using lots of moisturiser. Vaginal dryness. Very bad arthritis, in particular right hand like a claw, unable to close fingers. Terrible fatigue, low energy despite healthy diet and exercise.

DrAttai

Date: 13 Apr, 2013

I'm putting together all of the comments now (talk is in less than 2 weeks!) - and I am amazed and honored that so many of you have been so open about sharing your experiences. This community is simply incredible. Please don't forget the suggestion of Dr. Julie Gralow above - the US Preventive Services Task Force is accepting comments on it's statement on hormonal therapy for breast cancer until May 13th: http://www.uspreventiveservicestaskforce.org/draftrec4.htm

Liza Bernstein

Date: 13 Apr, 2013

I promised I'd add info about my most recent Breast Cancer diagnosis adventure and Tamoxifen. Diagnosed with 3rd Primary in 2009, also ER positive. Despite misgivings and terrible previous experience (see my earlier comment), given that my body seems to really, really enjoy producing breast cancer, I decided to try Tamoxifen again. I have been on it since completing chemo and two huge surgeries (SIEA Recon & revision) in late 2010. I would have thought it would have been worse than after my 2nd BC, given the cumulative effect of going through cancer three times, and the impact on one's body of all those treatments and surgeries.... but, to my surprise, it hasn't been. Somewhere I picked up the idea to take the pill at night before bedtime, rather than in the morning and it has been working for me. I am not doing as poorly on it as I had before. Fatigue still fells me, I am still not able to live a "normal" person's high-energy life 7 days/week, but it is definitely not as bad as before. I do get the cognitive fuzz, but nowhere near as constantly or as severely as before. My oncologist doesn't know why I am tolerating it better this go-around... I am wondering if the taking it at night thing is what is helping. Again, thank you so much for your interest in our experiences. I am looking forward to seeing the slides. LB

Liza Bernstein

Date: 13 Apr, 2013

By the way, I haven't even thought to address here the potential serious side effects of Tamoxifen, such as the increased risk of uterine cancer. The way I deal with them is a certain form of denial. My GYN has told me what to look out for (unusual bleeding) and that is pretty much it. I have so many other pressing things to worry about that I just file that one and others like it under CODB (cost of doing business). It's not like I'm thrilled about it, but I made up my mind to stick out Tamoxifen for the full 5 years if I can at all tolerate it... In so doing, I hope and pray that it is not only preventing any new breast cancers from forming (yes, even after mastectomy there is always some breast tissue left behind), but also hunting down and annihilating any potential mets. When you go at cancer with all guns blasting, you have to accept some terrible, barbaric compromises. Gah.

Dafogle

Date: 13 Apr, 2013

I took Arimidex for 5 years - my primary side effects were achy joints (knees, fingers, elbows) and problems with my short term memory (I did not have chemotherapy). My gynecologist recommended taking glucosamine chondroitin every day and that really did help with my achy joints. I didn't find anything that helped with my memory problems - other than writing things down - it was really bad - I'd be sitting in the car ready to leave and would think I need to go back in the house and get "x" - when I got back in the house I couldn't remember what I'd come back for - this happened with many different things - and was so common - I couldn't remember anything ... so I'd write it down to help my memory - that worked ! My achy joints and short term memory problems cleared up once I'd completed my 5 years of Arimidex.

Jb

Date: 13 Apr, 2013

Wrist problems are typically overuse injuries. There are joints in the wrist so the Meds may have caused the joint pain. It may also be from the previous radiation treatment where the tendons have weakened even though the radiation was at a different site. I am actually getting info wherever I can on radiation because doctors seem to negate low blood levels from the radiation to the point it's unusual or the only one with this. But, it's websites from other patients- and there are MANY- of side effects from different treatments. So Thank You very much of your personal accounts. It let's us know we are not alone and the things occurring are real!!!

Sharon

Date: 13 Apr, 2013

I've been on Tamoxifen for 2.5 years. When I stopped taking NSAIDS after my weight loss surgery, I started having some not so fun joint pain which has been dismissed as a hormone imbalance that can't be treated because my cancer was estrogen positive. I'm stuck between a rock and a hard place. Tamoxifen makes me nauseous it makes my brain fuzzy and now this.

DrAttai

Date: 13 Apr, 2013

Hi Sharon - if it's any consolation, you are not alone. But the tamoxifen can certainly cause a form of "chemobrain" which is being recognized more and more - unfortunately it is still poorly understood and therefore we do not have good options for treatment. The joint pains can often be managed by regular gentle exercise (yoga, swimming, walking are all great) as well as acupuncture. Glucosamine-chondrointin has been shown to be effective in small studies. Make sure you discuss your symptoms with your oncologist!

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Valerie Henderson

Date: 13 Apr, 2013

I had stage 2 grade 2 breast cancer and after mastectomy was put on letrozole or femara. I have taken it without problems for about a year when suddenly the most horrific pains in my hips and hands. I could not walk more than a few steps without experiencing excruciating pain. Blood tests showe imflmaatory markers were high and I have been referred to rheumatology. I am convinced it is the letrozole and have stopped taking it.

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