| Key to ratings for nolvadex: 5-Very Satisfied: this medicine cured me or helped me a great deal. 4-Satisfied: this medicine helped. 3-Somewhat Satisfied: this medicine helped somewhat. 2-Not Satisfied: this medicine did not work to my satisfaction. 1-Dissatisfied: I would not recommend taking this medicine. |
| Rating | Reason | Side Effects | Comments | Sex | Age | Time Taken | Date Added | |
| F M | ||||||||
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| 2 | breast cancer | hot flashes, hair loss, memory & cognitive difficulties, joint pain | M | 53 | 2 years | 1/17/2010 | 3 | Breast cancer | Hot flashes, cold flashes, vaginal dryness, vaginal atrophy. Fatigue. Cognitive issues. Initially some vaginal discharge, but that went away after a few months. | Although those are a lot of symptoms, so far (after 8 months) it is doable. No symptom is too severe. I was found to be (genetically) an "extreme metabolizer". | F | 51 | 8 months | 11/23/2009 | 3 | breast cancer | fatigue, pain especially in feet and hands, depression, hair loss, occasional mild hot flashes | It isn't too bad being on tamoxifen but would be interested in having a break from it to see if some of the side effects lessen. | F | 52 | 2 years | 11/11/2009 | 1 | stage 1 estrogen fed cancer | Confusion, tiredness beyond all means, lack of interest in doing anything. First I was hyper then tired. Felt drugged when taking it. Plus I had to constantly get up and go to the bathroom during the night. | I am not happy taking this drug. I need to be able to work and Tamoxifen is not going to let me. I took Arimidex and that was bad too. Will check with the oncologist for something else. | F | 57 | 3 days | 10/4/2009 | 4 | Stage 1 BC, Bi-lateral Mastectomy | None so far although weight gain looks like it might be an issue. I am exercising and watching what I eat but am not losing. Feel blue....but that could be because my baby just left for college and I miss him. | When my oncologist first spoke of taking tamoxifen I did not want to do it because I was still feeling crappy from my surgery. He said that my risk was small (because i had a double mastectomy) so my benefit would be small. However, the thought of a reoccurrence is truly terrifying so I decided to give it a go and I've been lucky so far. It's only been 54 days so I'm still a newbie to the drug but I am hoping for the best. I can't say whether the med is helping me or curing me....that remains to be seen but it is what I am hoping for! | F | 47 | 54 days | 9/23/2009 | 1 | Breast CA Stage II, 1 positive node | For the first five months on Tamoxifen I experienced only hot flashes and vaginal discharge. The hot flashes have been severe. I would be constantly breaking out in a sweat and feeling as if I was on fire. Breaking out in a sweat ten times during a shift at work was very inconvenient and uncomfortable. I was soaking through my clothes. These sweats and hot flashes interferred with sleep. I was only able to sleep for short periods and then would be awake the rest of the night. I couldn't get comfortable. After five months I began developing arthritis in my hands. My left thumb has been very painful now for four months. Both hands feel stiff and hurt. I also had transient joint pain in the lower back, hips, and shoulders. Around this same time I began having terrible fatigue. I was a marathon runner when I was dx'd with cancer and continued to run through the chemo and before and after my mastectomy/reconstruction surgery. During months 6 through 8 on Tamoxifen, I began to | After three weeks without Tamoxifen, I feel so much better. I didn't even make it a year on Tamoxifen. I went into this with an open mind believing in the importance of taking it. It seems to me that the damage Tamoxifen can cause due to short and long term side effects is SIGNIFICANT. My question is why are the drug companies and the doctors reinforcing the idea that side effects are minimal to noexistent? If they lie about this then why should I have any faith in their so-called studies? | F | 48 | 8 months | 9/22/2009 | 1 | Breast cancer prevention | Hot flashes that had no flash -- just extremely HOT ALL THE TIME! I had to sleep with ice packs. It felt is if my blood was boiling inside of me and my fingers felt like they were about to explode. I was just miserable the entire time I took it. When I stopped taking Tamoxifen, everything got much better. | F | 51 | 4 months | 8/17/2009 | 4 | Post-breast cancer treatment | Hot flashes; nothing else significant | I began tamoxifen following mastectomy and radiation. Quite frankly, reading some of these reviews had me scared to death. My doctor, pharmacist and another breast cancer patient assured me that severe side effects weren't common and I'm glad that I listened to them. I'm blessed in that my side effects have been minimal and the drug is not bothering me. It's important to realize that the chemistry that makes up our bodies is different and that bad side effects exist with some patients and not others. So, keep an open mind if you're going to be taking the drug and go in to it with a positive attitude. I'm confident that this drug will help prevent recurrance of the cancer in my body. | F | 45 | 5 months | 8/14/2009 | 2 | metastatic breast cancer | Tiredness, dizziness, brain fog, loss of interest in people and doing things, slight nausea at times, depression, weight gain, hot flashes. | I took Tamoxifen nine years ago and wasn't aware of any side effects. I was also taking Paxil at the time, and I attributed the weight gain to that, but it was probably the Tamoxifen. Didn't have hot flashes then because of the Paxil, or depression. I have since read that Paxil interferes with Tamoxifen, making it less effective against progression, so can't go on it this time around. | F | 59 | 2 months | 7/21/2009 | 2 | to prevent breast cancer recurrence | pelvic pain, uterine cramping, severe anxiety attacks and vaginal discharge | I have a history of panic disorder, always dealt with it with no meds,just relaxation exercises. The panic from the Tamoxifen is nearly crippling- probably because it changes the hormonal balance, even though I had an uneventful menopause as well as happy pregnancies. Also, the pelvic pain is unsettling - no one knows what it is, even after two ultrasounds. But it's there and I don't know if I can continue on this medication.MD's say anxiety and pelvic pain are not symptoms - not so. the pelvic pain is very unpleasant | F | 61 | 14 days | 7/14/2009 | 4 | Breast Cancer recurrence prevention | None so far. Fingers crossed. | I am taking the generic Tamoxifen. I am giving it a 4-star rating because I still don't know how well it will perform its chief function, to prevent cancer. | F | 41 | 6 weeks | 7/3/2009 | 3 | Hypogonadism | No bad side effects so far but it has seemed to make my testicles bigger and increased my sex drive which is why I am taking it in the first place. | Excellent med for me! I am taking 10mg twice a day. I would like to see even better results but I have only been on it a week so far. I will add more comments in another week. | M | 51 | 1 weeks | 5/8/2009 | 4 | Stage 2b breast cancer | Sweats not so bad. I was already on Effexor, so that may have helped. | I think Tamox restarted my periods after they stopped from chemo, so I went on Lupron also to suppress my ovaries & their estrogen production. After 2 years had significant hand & bottom of foot swelling/pain especially in the morning. Also, constant throbbing in lower legs, cramps in feet & calves, numbness in arms when bent. I tried switching to raloxifene (Evista) but that made me mentally confused and I feared for losing my job. So I stopped Evista after 4 months. After reading about AIs, I will probably go back onto Tamoxifen for 3 more years...seeing my Dr in a week to discuss. | F | 47 | 2 years | 4/22/2009 | 4 | Breast Cancer Stage 2 | No side effects that I can tell so far. | F | 51 | 2 years | 2/23/2009 | 2 | extreme hair loss 200 hairs a day - I quit after 90 days | M | 54 | 90 days | 2/2/2009 | 5 | Stage 1 ER+ Breast Cancer | I seem to need more sleep - I become suddenly exhausted in the evening, and must go to bed, then I sleep for an average of 9 hours, & find it difficult to get up because I'm still tired upon waking. But once I'm up, and for the rest of the day, I'm fine. | I have not had any major side effects, but have started Leupron injections to stop ovarian function, and so will now switch from Tamoxifen to Femara for hormone therapy. | F | 39 | 6 months | 1/11/2009 | 5 | Breast cancer stage 1 | I am also very surprised at minimal side effects. I had only drowsiness - so I take it at night, and now this is no problem. Also get mild skin itching - no big deal. So far, that is all. | I have not gained any weight. | M | 44 | 14 days | 1/9/2009 | 1 | Had breast cancer | hot flashes, weight gain in stomach, tired--God only knows what else! | Took it for 5 years. | F | 67 | 5 years | 1/7/2009 | 2 | Stage IIIC Breast Cancer | Fatigue, felt heavy, weight gain, hot flashes, brain fog, memory loss, depression, emptiness, lack of interest, shortness of breath, foot/ankle/leg bones and general joint pain, foot cramps, general stiffness, toes and fingers feel swollen in AM, dizziness, nausea, white spots on throat, palpitations, black stool, urological dryness, bad taste, night sweats, interrupted sleep, tossing/turning, petechiae, appetite stimulation, rising BP, abdominal tenderness, and I suspect it of keeping my counts down. | Felt worse and worse until I begged off. Everything was becoming such an effort. I thought I was taking a long time to recover from chemo and rads (1 yr since chemo, 8 monts since rads), especially since chemo slammed me into menopause, I was anemic a lot, and had slight cardiotoxicity. But it didn't seem I should be losing ground in some areas, instead of improving. After three weeks off Tamoxifen, I am WORLDS better. I had no idea how many of my symptoms it was either causing or intensifying. I am functional again--even getting some things done around here. Back in touch with my emotions, feeling so much more normal, able to think again, not nearly as tired, not dizzy, not nearly as short of breath, hot flashes still here, but not as often or as bad, can SLEEP at night, interested in life again, feel lighter, more flexible, appetite is normalizing, abdominal areas feel better, heart rhythm improving, feet and right ankle still hurt, though. Can't wait to see my next CBC. Onc | F | 48 | 10 months | 10/24/2008 | 5 | Atypia | Cessation of menses. | F | 50 | 4 years | 9/10/2008 | 1 | breast cancer | Unspoken collagen issues | Most body tissue/ligaments etc is composed of collagen including the retina. Estrogen promotes collagen production and when estrogen is suppressed collagen in the tissues is reduced. Since my collagen loss started I have experienced a torn rotator cuff, retinal tear with floaters so bad that I cannot read with my right eye, vaginal dryness, loss of elasticity in my urethra which causes leakage, ACL tear, and numerous other joint problems with associated pain. I am not overweight and WAS a power walker for 40 years. My quality of life is zilch...was it worth it? I think not!!! I will not take anymore anti-estrogen drugs. | F | 61 | 2 years | 9/10/2008 | 3 | Breast cancer | Headaches every day. | I've only been on it for 4 months. | F | 51 | 8/18/2008 | 5 | Recurrent Ovarian Cancer | Extreme hot flashes, weight gain, very thin hair, and memory problems | I was given tamoxifen after my ovarian cancer returned in a single lymph node after chemotherapy. It will be 4 years in October that I have been cancer free. I was only cancer free 11 months after chemo so this is great to me! It is impossible to know if the tamoxifen is what is keeping the cancer at bay, but my oncologist expects I'll be on it forever. I truly hate the hot flashes which are severe. I am a children's librarian and sometimes when I do stories for classes I'll sweat so much I'll drip on the pages of the book. I am very self conscious about this, but except for taking effexor there is nothing I can do. I'd rather be alive than dry. The memory problems are scary and make me less effective at work. But, to balance...my cancer is at bay I don't want to stop the tamoxifen. | F | 48 | 4 years | 8/3/2008 | 1 | To prevent breast cancer recurrence | Initially I only experienced fatigue, which continued to worsen. My blood pressure soared even though it had been under control for 10 yrs with cozaar. After a few weeks on the drug, my eyesight became blurry to the point that I was unable to read the phonebook listing on my cell phone. Also developed mouth sores along with other symptoms I have since forgotten....oh yes, significant short term memory problems too. It's been four months since I stopped taking it (only took it for 5 weeks) and am feeling well now except my bp is still up. It took a long time to start to feel normal again. I do not plan on resuming this medication or any of the new aromatase inhibitors. | F | 49 | 5 weeks | 7/30/2008 | 5 | Gynecomastia | nothing so bad!! | it reduced my gynecomastia from 1.5~2cm glandula tissue to 1cm in just 1 month!!! i saw the result in the 2nd week... the tissue became softer... and the puffiness of my tit subsided i have plan to continue it for 2 months for complete resolution | M | 25 | 30 days | 6/24/2008 | 1 | stage 1 bc, lumpectomy er+ | Shortness of breath, dizziness, fatigue, low grade fever, calf cramps, hip and back pain, confusion, memory loss, minor night sweats | I have been taking Tamoxifen for 2 years with a 5 month break (July 07-Dec 07). I started getting all these side effects after a year and onco didn't think it was the meds. I went off of the med for 5 months and felt fantastic-all the side effects went away. Started taking the meds again Dec. 1, now all the side effects have returned. I will be going off Tamoxifen in 2 wks and trying Lupron/Arimidex, but am terrified of feeling even worse. If the Lupron/Arimidex are as horrible as I keep hearing they are, I will seriously consider stopping all the meds. My quality of life is the pits, I would like to be able to enjoy life with my family. | F | 45 | 2 years | 6/17/2008 | 5 | Post cycle therapy from AAS | Slightly elevated liver values | love it. its getting my balls bigger and sperm count is up. loads have been much thicker and whiter. | M | 29 | 1 months | 6/4/2008 | 2 | breast cancer | Prescribed Tamoxifen 5 months ago,had slight nausea on generic brand switched to Nolvadex. Into the third week of taking Nolvadex and I have exruciating pain in left knee.I am not overweight and have always been active. | F | 49 | 21 days | 4/27/2008 | 3 | Stage 2 breast cancer | Few hot flushes, better in winter. No weight gain but weight is hard to loose, just need to be careful. At 39 i feel i have aged in the joints but this could be because of other meds | I am happy do long as it keeps the cancer away for good | F | 39 | 1.4 years | 4/24/2008 | 4 | stage 1 bc lumpectomy | Constipation, hot flashes, vaginal discharge | I started taking Tamoxifen last August after two, terrible years of joint pain and weight gain caused by taking Arimidex and Aromasin. At first my doctor prescribed 20mg per day, but I did not react well and became so constipated that I did not want to continue the treatment. The doctor advised me to try taking half the amount, i.e. 10 mg daily. He said that for those patients who metabolize slowly 10 mg were sufficient. Since changing to 10mg I have felt much better and have only occasional constipation. I still have hot flashes, especially in the evening, but not so severe as before, and I no longer have the joint pains I had with Arimidex and Aromasin. | F | 65 | 1 years | 4/10/2008 | 5 | metastatic breast cancer | I have been on Tamoxifen 7 months now after Femara 5 months and before that Arimidex 7 months. The side effects from the Aromatase inhibitors were so intense that I had no quality of life and was switched to Tamoxifen. I am very surprised at minimal side effects. Somewhat achy and insomnia, but on the whole feeling really well. | My tumer marker is 16. Just had Pet CT and bone scan to check status and all stable. I never expected to do so well on this drug. I didn't think it was strong enough to help my pretty advanced cancer. | F | 65 | 7 days | 2/26/2008 | 3 | breast cancer | vaginal discharge, roving joint pain, hot flashes, menopause, | F | 48 | 1 years | 2/5/2008 | 1 | to reduce re-occurrence | Extreme fatigue, could sleep 10-12 hours daily and wake up tired. When ovulating- ? fluid retention the hip pain was so bad I could not walk. Intercostal muscle and rib pain and short of breath on minimal exercise. | I have had 2 attempts at taking this. The first time I had bloating and period like pain only to find on scan I had a massive endometrium at 20mm which needed D+c no atypical cells fortunately- that was a scare. I was off the drug for 4 months and felt fine, I am now back on it. Just 3months later cannot stand effects as mentioned in side efefcts prev. | F | 45 | 3 days | 1/28/2008 | 1 | DCIS Stage 2a-N0-M0, ER/PR+ | Soaking hot flashes, continuous weight gain, extreme calf pain/charlie horses, joint pain, extreme upper extremity muscle pain and weakness, numbness/tingling in fingertips, headaches, hypertension, trochanteric bursitis, arthritis symptoms, concentration problems, and I am fighting depression. | Status post lumpectomy, chemotherapy/radiation, BRACanalysis negative: To note, after four cycles of AC chemotherapy, my body has literally aged 10 years with the chemical menopause. After reporting my listed side effects to oncologist: "muscle, bone, weight gain, etc. not related to Tamoxifen, maybe you have carpal tunnel, you could probably use a support group". Could a doctor be more condescending? I purposefully submitted myself to EMG and nerve conduction studies plus x-rays to my hands - negative. I type for a living and had become so debilitated from pain - could not vacuum, wash my hair, etc. with so much pain in my hands and arms. Pain in my left calf so severe I could barely walk at times. PCP and I decided to go on a drug holiday, and within 10 days a lot of the pain started to disappear. Naturopathics have advised adding milled flax seed to diet. I have decided my "quality" of life is more important than "quantity" of years just existing | F | 43 | 18 months | 12/16/2007 | 2 | BC stage 3 | Menopausal like symptoms, weight gain, insomnia. | I agree that Tamoxifen is a "walk in the park" when compared to Arimidex. Sadly, I was one of those women that was doomed to get endometrial cancer from Tamoxifen. Luckily I caught it early and I had a full recovery. I suggest searching the web on Tamoxifen. It is listed as a carcinogen by the CDC and many countries reuse to use it because they say that it causes as much endometrial cancer as it protects from breast cancer recurrence. The studies are confusing to me, but I was one of the "unlucky" ones... but lucky enough to tell you my story! | F | 38 | 1 years | 12/4/2007 | 4 | Breast Cancer | Have been on it for about 1 year. Hot flashes have subsided some, finally sleeping better but the leg cramps can be tough. Glad to hear others complain about weight gain. I am working out, watching my diet and my wait isn't going down. Very frustrating. The foggy brain makes work difficulty some days. | F | 49 | 1 years | 11/26/2007 | 5 | Breast Cancer - Stage 1 Estrogen + | Occasional night sweats but no other side effects. This is in stark contrast to the nightmare of side effects that I had in taking Arimidex for 10 months. On 20 mg per day of tamoxifen (a generic), I feel great. | Tamoxifen is a walk in the park by comparison with Armidex. My blood pressure has returned to normal, sex drive has returned, energy level is at pre-surgery level, and thinking & moods are back to positive and normal. My body couldn't tolerate the total deprivation of estrogen caused by an aromatase inhibitor (Arimidex) but does fine with the more selective effects of tamoxifen. If you are post-menapausal and think tamoxifen has side effects, consider yourself lucky as the other drugs such as Arimidex can disable one. Fortunately, my medical oncologist didn't buy the drug company line and dismiss my complaints about the side effects of Armidex - she instead provided facts and reassurance that the marginal statistical difference in effectiveness of Armidex versus tamoxifen was small. She was clear that continuing to suffer with the side effects of Armidex would not guarantee that I would never have a recurrence. Despite faithfully taking Armidex (or tamoxifen) for five years, some | F | 65 | 7 months | 10/25/2007 | 4 | Breast Cancer | Hair thinning, Some joint stiffness, feet hurt sometimes | I have not gained weight. | F | 53 | 5 months | 10/21/2007 | 3 | Breast cancer | Weight gain, tiredness, achey joints and hot flushes. | Asked my GP if I could come off it after 4 years and he suggested try for 3 months to see whether the hot flushes were the drug or menopause. I have been off it for weeks and the flushes have stopped but I am bleeding terribly, almost haemmoraging and have been for 8 days now. I am off to the docs to see what can be done and have resumed taking Tamoxifen. | F | 48 | 4 days | 10/10/2007 | 3 | breast cancer estrogen positive | hot flashes, leg cramps, | hate taking a med that alters my cells, but hate not to take it for fear of the cancer returning | F | 42 | 8 months | 9/14/2007 | 3 | Breasyt cxancer Stage 2 est + | I have previously posted so as not to mix up your poll. After visiting this site, had a long conference with my Family Physician. I had to go on blood pressure meds which helped greatly with hot flashes, I am also on a diuretic,and I stick to a very low fat diet. My Dr. also put me on zoplicone to help with sleep problems. Right now I have erased all the bad effects, but have only been on this drug for 4 months. | I will stay with this drug at this time, and will try and deal with side effects as they crop up. I have had no problems with fuzzy brain, but exercise my brain, as well as my body. | F | 67 | 4 months | 8/9/2007 | 5 | s/p bc (generic tamoxifen) | None that I can wholly attribute to the tamox. Night sweats, hot flashes - started before tamox, actually disappeared the first 2 weeks on the tamox but returned. Some depression but I relate that a lot more to the breast cancer and other life changes. No problems with joint pains any more than I ever have with my very active lifestyle. | If it helps prevent a recurrence I'm happy to take it. | F | 50 | 10 months | 7/29/2007 | 1 | stage 2 breast cancer | Sleeplessness, aching joints ankles knees,restlessness. | I was on Arimidex, refused to take it after 2 weeks of agony.Oncologist switched me to tamoxifin.I'm not finding this any better. I,m going to roll the dice and go on high anti-oxidant diet. No matter how many years I have left, I do not want to be a mental emotional cripple. In my opinion only There are worse things than cancer. I don't understand why they can't come up with a drug,that isn't so debilitating to our over-all well being. I want quality life Not quantity. | F | 67 | 14 days | 6/30/2007 | 1 | tamoxifen | no weight gain, tired and achey muscles, hard to get motivated, breast tenderness(almost like pms all the time) water retention, dizzy spells, lower stomach pain when sitting, and just plain sick. Similiar to flu like symptons. Have not taken this drug even a full month, and getting ready to completely stop. 40 years old | F | 40 | 25 days | 6/25/2007 | 3 | breast cancer prevention | Hot flashes & night sweats | Did change the density of my breasts & made my cycle shorter and less painful | F | 44 | 8 months | 6/12/2007 | 5 | Post 5 yrs Tam for BR CA | I've posted previously so don't want to skew the stats by resubmitting but felt I've had some results and wanted to share with all of you. I was only on Femara 2 months and have lost nearly a year of my life with all of the side effects also mentioned by all of you. Is anyone considering a Class Action Suit? I am living overseas and couldn't initiate but would be very interested. We have spent thousands of dollars trying to alleviate pain and I've lost so much time.. | I read on this site that some had relief from acupuncture and someone said they got relief from Apple Cider Vinegar and someone said Isotonix. I've tried all of this for the last few months. I recently started the isotonix and am finally feeling better. My legs don't hurt nearly as bad. I hope good health for all of you. | F | 42 | 2 months | 6/6/2007 | 3 | DCIS & LCIS | Hot flashes and night sweats. Up a lot during the night. I have to have a small fan blowing on me during the night. It really helps. Much worse in the summer, even though the A/C is set pretty low. I hate taking this and can't wait to get off it. Only one year to go. I also take Fosamax weekly. I took lamisel a few months ago (for toenail fungus) and had to stop after two months. It made me very dizzy. I was pretty scared. Didn't know if it was from tamoxifen or lamisel. That was in November. The dizziness went away in a couple of weeks, but now it's back and I'm worried it might be the combination of drugs. I'm so sick of medicine! | I also have pain in my fingers, thumb and elbows. I take anti-inflammatories and that helps a lot. I just went off those, to take prednisone for poison ivy!!! | F | 57 | 4 days | 5/31/2007 | 1 | Stage 1 Breast Cancer (estg -recp) | Hot flashes - although the longer I take the drug, only have them when I feel stressed or am active. Have joint pain - thumbs, esp. right, all fingers, pelvis, knees. Deep throbbing in my quads (upper leg muscles) EXTREMELY FATIGUE. Tired all the time. Bottom of heels also ache. 10 lbs weight gain. | Have excercised regularly for the past eighteen years. Made sure to modify my diet as to eliminate, poor eating habit as culprit. Very difficult to loose the added pounds. Unfortunatley, the study materials by which our physican and oncologist use as base-line for determining side effects are so non-coherent compared to the side-effects people have experienced while taking the drug after chemotherapy and/or radiation. Also, I am concerned with the blood clot issue. I will research this issue further. | F | 40 | 1.5 days | 5/21/2007 | 1 | Breast cancer | Joint and muscle pain in legs, loss of visual acuity, mental slowness, increased hot flashes | This drug is awful!!!! The symptoms I mentioned were all too real and horrific. I took myself off of Tamoxifen within one year. For those suffering from hot flashes, give Progesterone cream a try. It's awesome! | F | 50 | 10 months | 5/11/2007 | 5 | Breast Cancer Stage II | I was on Femara, an aromatase inhibitor, for six weeks and it nearly did me in. Tamoxifen is like a walk in the park compared to that drug. Can't say I have yet experienced any noticable side effects other than occasional hot (warm) flashes. But started having those back when chemo put me into menopause - before tamoxifen treatment. | I'm glad that I tolerate this drug well. And I feel relieved that it has a 30 year history in helping prevent cancer recurrence, also that its side effects are a 'known quantity'. Not so with the aromatase inhibitors. I would have been in real bad shape if I had tried to continue on Femara. It took me 10 weeks to get over the crippling side effects. | F | 52 | 4 months | 5/8/2007 | 4 | Breast Cancer | None! | I've been taking Tamoxifen for just under 2 years to lower risk of breast cancer recurrence. I switched to a low-fat whole foods vegan diet as soon as I got my cancer diagnosis 2 years ago. Not only did this diet cure my arthritis, sciatica, acid reflux, PMS, and asthma, it lowered my cholesterol from 191 to 127! I was quite afraid to start taking Tamoxifen, being that I'm very sensitive to chemicals and medications (I refused chemo for this reason), but I had no side effects whatsoever, and I believe it's the result of the diet, which is the most natural way we can eat (whole unrefined foods, no meat, fish, dairy or oils of any kind). Read The China Study by T. Colin Campbell (out of Cornell University) and you will know all there is to know about cancer and prevention! | F | 46 | 21 months | 5/8/2007 | 1 | Stage 0 Breast Cancer | Major side effect: Deep Vein Thrombosis which resulted in Pulmonary Embolism. Was rushed to the ER and had a week long stay in the hospital and six months of blood thinners Minor: hot flashes, arthritic pain, mood swings | The warning label says it causes blood clots in a small percentage of people. Be extremely careful using this drug. | F | 78 | 3 months | 5/1/2007 | 3 | stage 2b breast ca | Hot flashes. Lately carpal tunnel symptoms and very sore feet when first getting up. Didn't relate those to the drug until I read these postings. | I just had a blood test saying I'm postmenopausal and will be switching to Femara soon. | F | 46 | 1 years | 4/18/2007 | 1 | Post mastectomy after chemo & radia | I weighed 120 after chemo and now weigh 150-160 after 5 years of tamoxifen. My oncologist says there's no research that proves tamox causes weight gain. But since I've been on it for just about 5 years, I plan to ask her to switch me to an aromatase inhibitor. HTH! | F | 59 | 5 years | 2/17/2007 | 4 | BC, lumpectomy, radiotherapy | Post menopausal at diagnosis in 2003. Slow and continuous weight gain, despite healthy diet, regular exercise etc. Increasingly bad memory / fuzzy brain - very interested to know how many other people have this who have not had chemotherapy and subsequent "chemo brain". I`ve also developed seborrheic dermatitis - scaly itchy scalp, and wonder if this is another side effect? | My oncologist has not attributed memory loss to Tamoxifen / Nolvadex - at least not to me. Nolvadex was recommended to me as the Tamoxifen brand with the least side effects. | F | 52 | 3.75 years | 2/10/2007 | 1 | breast cancer | I took Tamoxifen for 1 month and had the worse side effects possible. Muscle and bone pain throughout the body and couldn't function during the day or sleep at night. Felt like a BAD case of the flu.Dr.said it would take 56 days to get out of my system .I am at 44 days now and counting. | F | 72 | 28 days | 1/28/2007 | 1 | Early Stage Breast Cancer | I started taking this medication approximately 4 years ago. I have had TERRIBLE hot flashes and about a 40 pound weight gain that seems to be attributed to this. Recently my liver numbers went up. I had an ultrasound last week and found that I have a "suspected mass" on my liver. I have a CT scan scheduled in the morning to see what the "mass" is. We all know that this drug can cause liver problems-that is why we have the regular blood work. I truly feel that this problem is related back to the tamoxifen as well because my liver was fine (according to the numbers) before I took it. My cancer doctor immediately took me off it last week when the ultrasound results came in. I still have don't know what will happen to me from here but I would say weigh the risks before using this drug! | I would not tell anyone not to take this drug. However, with that said, I would say to investigate it thoroughly and be aware of the possible side effects. The risk of taking this drug might not be worth the benefits. | F | 46 | 3.5 years | 1/21/2007 | 1 | Early Stage Breast Cancer | I started taking this medication approximately 4 years ago. I have been miserable the whole time that I have taken it. I have had TERRIBLE hot flashes and about a 40 pound weight gain that seems to be attributed to this. I was given Effexor for the hot flashes and that helped some but I was still hot most of the time. I am normally cold natured. Recently my liver numbers went up. I had an ultrasound last week and found that I have a "suspected mass" on my liver. I have a CT scan scheduled in the morning to see what the "mass" is. We all know that this drug can cause liver problems-that is why we have the regular blood work. I truly feel that this problem is related back to the tamoxifen as well because my liver was fine (according to the numbers) before I took it. My cancer doctor immediately took me off it last week when the ultrasound results came in. I still have don't know what will happen to me from here but I would say weigh the risks before using t | I would not tell anyone not to take this drug. However, with that said, I would say to investigate it thoroughly and be aware of the possible side effects. The risk of taking this drug might not be worth the benefits. | F | 46 | 3.5 years | 1/21/2007 | 4 | DCIS-lumpectomy-radiation | third post-see 7/11/2006-age 68. After switching to Boniva, once a month, from Fosamax, joint/muscle pain went away.Hair still thinning, only side effect. TO ALL: has anyone developed uterine or ovarian cancer from this drug? My biggest worry. My DCIS was Stage 0. Wonder how long I should stay on this? | F | 69 | 1 years | 1/20/2007 | 3 | prevent breast cancer recurrence | weight gain, carpal tunnel syndrome, extreme joint pain knees and shoulders | ALL side effects disappeared within 3 weeks of discontinuting medication. Lost 20 pounds of the 25 pound weight gain within 8 weeks | F | 54 | 1 years | 1/5/2007 | 1 | Breast cancer | I took Tamoxifen together with Zoladex (I started the Zoladex two months earlier). However, after the first month of taking the Tamoxifen, my periods returned. After three months of this, my Dr took me off Tamoxifen as he said it was negating the effects of Zoladex and I was no longer in "menopause" which was what this combination of drugs was seeking to achieve. "Very unusual" apparently. Whilst on Tamoxifen, my breasts shrank to a tiny size, I had very bad constipation, total insomnia (possibly linked to the Zoladex as this continued after I stopped the Tx) and when my periods started (due to the Tamoxifen negating the effects of the Zoladex which it isn't supposed to do), my onc had me do a very unpleasant gyne examination as he thought my uterine wall was thickening (which thankfully it wasn't). | I never wanted to take this drug and wish I had listened to my instinct. I have had persistent hair loss since starting the Tamoxifen six months ago -- I don't know if this is linked to the Zoladex or the Tamoxifen, but I gather that the toxicity of both drugs (I also decided to stop the Zoladex two months ago) remains in your body for a very long time. Rather than go down the "drug route", I have decided to prevent a future recurrence of bc through nutrition and lifestyle changes, positive thinking and holistic approaches to optimal health. The drug companies are rich enough and I'm fortunate that my breast cancer was low grade and low risk and I believe I can beat it on my own. | F | 37 | 2 months | 10/29/2006 | 2 | Cancer of 1 breast duct | My mother is taking Tamoxifen to keep cancer from going into her left breast like it did her right. She has been really sick from the symptoms: dizzy, nausea, clammy hands, high blood pressure and almost passing out several times when she bends down and back up. The doctor told her to break the pill in half and take half in the morning and half at night, it does help most of the time. But worries me which is the worst and what are the chances if she does not take for 5 years as prescribed. The surgeon also removed her right breast and lymph nodes from her right breast. The cancer was in site and supposedly not spread yet. Her mass was so large that they had to remove the whole breast. No chemo. | F | 73 | 7 weeks | 8/16/2006 | 4 | Tamoxifen- post-DCIS | This is second post.Quit taking T. and Fosamax for about 6 weeks due to diffuse bone and muscle pain and mental fogginess, lack of interest in life.Med. oncologist p.o.'d about this when I saw him a couple of weeks ago. I agreed to go back on Fosamax but switched to Boniva (once a month) instead of Fosamax. However, they are both bisphosphonates so probably cause similar side-effects. Did feel much better with the six-weeks off Tamoxifen and Fosamax. Previous side-effects have not come back. If I begin having GI,bone,muscle problems will quit Boniva. Believe my hair not growing back in, thinning eyelashes are related to Fosamax and Tamoxifen (been on T. for about 7 months) Do have some joint,muscle pain relieved by exercise like gardening, walking, golf, etc. Am very tempted to quit Tamoxifen and just take my chances but Med-oncologist scared me saying if DCIS returned to same breast would mean mastectomy. Should I believe him? Is anyone taking these two drugs together and having unusu | F | 68 | 7 months | 7/11/2006 | 4 | Stage 2b Breast Cancer and BRCA+ve | I have only had two minimal side effects so far, a. I get a very occasional cramp in my leg, (a hot bath cures it quick smart) b. If I forget to take my tamoxifen tablet, I get a terrible headache for a week. Of course the solution is not to forget to take the tablet | I know other women have had bad side effects, I havent. I think its the "luck of the draw" I would reccomend at least trying it and seeing if you get any side effects before making a decision on whether to talke it or not. | F | 38 | 10 months | 7/3/2006 | 1 | dcis-lumpectomy-radiation | Took Tamoxifen,not Nolvadex. Gradually increasing r.hip pain,lumbar pain,aching down r.leg. Difficulty standing up after sitting for 30 min or more from hip pain.Constant uterine pressure feeling,similar to premenstrual pressure. Sometimes felt mentally unalert as if current info was just bypassing my memory. Decreased interest in people and events. | Had been on Fosamax for about 7 years with gradually increasing joint and muscle pain;check out Foxamax on this site. Believe tamoxifen caused increase in joint and muscle pain, a synergistic effect. Have stopped both drugs about six weeks ago.Believe I feel better. Did some heavy scuffle-hoeing in my veg.garden for a couple of hours yesterday and had less pain afterwards than without this exercise.Less sore than usual this morning. Believe this is mild arthritis, not osteoporosis. I'm going to take my chances with future cancer occurrence.Friend had DCIS,lumpectomy,radiation,tamoxifen for 5 years; now in year 11 has developed aggressive cancer in other breast. So does Tamoxifen protect us or harm the immune system so that other cancers can develop years into the future?Would appreciate anyone's comments to my e-mail address. | F | 68 | 5 months | 6/17/2006 | 3 | DCIS | Confusion, memory loss, VERY low energy level and severe muscle, joint & leg pain. | I am taking a 3 mo. hiatus from the medication right now. After one week, my memory and energy level improved greatly. However, still having confusion and pain. After 3 months my oncologist plans to try Evista. I don't want the cancer to return, but what is life if you can't live it? | F | 51 | 2.5 years | 6/14/2006 | 4 | Breast Cancer | hot flashes, weight gain, water retention, a lot of leg and feet pain - hobbled around in the morning until I got going (usually about on hour) | Immediately gained 35 pounds, and had hot flashes that would melt your tennis shoes. The leg pain subsided at some point after year one. I started water pills for the water retention and after about 1 - 1/2 years, the weight just kinda melted off, must have got used to the med. The feet pain stayed with me until I stopped Tamoxifen. I took it for 5 years, and after 2 1/2 years - I started Femara. I have been on Femara about 2 1/2 years - no problems - nothing - much easier to tolerate than the Tamoxifen. I am a ten year survivor - so I will take what is thrown at me - anything to stay healthy and cancer-free!! | F | 52 | 5 years | 4/17/2006 | 1 | To prevent a recurrence of DCIS | Hot flashes and weakness, especially during hot weather. I am beginning to put 2 and 2 together and see that this drug is interfering with my ability to tolerate new medicines. Specifically at this time (there have been others) I'm having dizziness and balance problems related to postural hypotension as I try to use Lyrica for my fibromyalgia and nerve damage (my major illness is Sjogren's Syndrome). I didn't suspect this connection at first, and then I also tried Cymbalta and I had an even worse reaction. It looks as though the tamoxifen depletes my store of salt and fluids and maybe other electrolytes. It seems also to bring on hypoglycemia. | Have other people found anything like this to be the case? I'd love to find out how people are solving this problem (switching to asomatase inhibitors?). Thank you! | F | 60 | 15 months | 4/15/2006 | 2 | Low Grade Ovarian Cancer | Weight Gain, Terrible Sleep problems, sleep deprivation, anxiety, depression dryness, | It did slow the progression of the tumors. It was hell. | F | 36 | 8 months | 3/18/2006 | 2 | Breast Cancer - Stage 1 | Hot flashes and night sweats at first which subsided after a couple of months of being on the drug. After about 5-6 months, I started noticing my memory failing and feeling like I was foggy a lot, which progressively got worse (my family even noticed!). I went off of it for a month and the side effect subsided. My doctor then switched me to Arimidex. | F | 40 | 11 months | 3/15/2006 | 1 | post mastectomy for BrCA | Male. Yeah, that's not a mis-click. Leg weakness & knee pain (couldn't get out of a car without hauling myself up); brain fog | Was switched to aromatase inhibitor. Luckily I have a drug plan. It's all guesswork for guys with BrCA. Not enough of us in one place to put together for any studies. Until then, we're just like women. | M | 60 | 4 months | 12/5/2005 | 1 | To prevent recurrence | Anxiety, increased vaginal secretions, constant sense of pressure in the uterus. Slept badly most nights. Knee joints hurt constantly. | I already had an ovarian cyst removed during my second pregnancy. I didn't need to worry about getting cancer of the uterus on top of worrying about recurrence. Also I was worried about tamoxifen being toxic to my liver in the long run. I stopped after 5 weeks. Felt immediately better. Am now on Arimidex. | F | 49 | 5 weeks | 8/30/2005 | 1 | Quite advanced breast cancer | Hot flushes, but less vaginal dryness than I had on Lupron (known as Prostap in the UK). It didn't control my (very oestrogen sensitive) cancer - the metastases in my liver got worse, and the cancer in my lymph nodes got worse - and I seem to have got cancer in my right leg as well, in the bone (femur). Also, a scan detected a | Didn't work for me. I was right to avoid it in the first place. I tried it as an alternative to Lupron, but it seems it had adverse effects on my uterus. | 48 | 6 months | 5/10/2005 | 1 | Quite advanced breast cancer | Hot flushes, but less vaginal dryness than I had on Lupron (known as Prostap in the UK). It didn't control my (very oestrogen sensitive) cancer - the metastases in my liver got worse, and the cancer in my lymph nodes got worse - and I seem to have got cancer in my right leg as well, in the bone (femur). | Didn't work for me. Also, a scan detected a | 48 | 6 months | 5/10/2005 | 1 | Advanced breast cancer | Why is this site not showing my whole message ? It keeps cutting out the last part ... I wanted to mention that the drug caused a large UTERINE FIBROID, which I had NEVER had before. | Didn't work for my (very oestrogen sensitive) cancer. Side effects on womb. I found Lupron (Prostap) to be better. | F | 48 | 6 months | 5/10/2005 | 4 | prevent recurrence of breast cancer | hot flashes (very mild and few, maybe 3-4/day) | F | 50 | 1.5 years | 3/13/2005 | 3 | Stage 2 breast cancer | Vaginal dryness, infrequent leg and back cramps, weight gain (or at least that's what I'm blaming it on) | My onc wants mt to switch to one of the newer AIs when I get to 2 years on Tamoxifen. Since Tamoxifen's been pretty easy for me, I'm nervous about the switch. However, I'll take anything to keep recurrance away! | F | 58 | 18 months | 3/13/2005 | 4 | breast cancer | loss of sexual interest, ovarian cysts, diarhea, hot flashes. | Have started getting Zoladex shots to counter-act the continous problem with ovarian cysts. Hate that one med leads to another..... | F | 39 | 2 years | 1/26/2005 | 2 | breast cancer | Fatigue, achy joints, cramps, weight gain. I stopped taking it for one month and felt a lot better without it. I don't feel healthy when I take it. Of course, there's no way to know if it's really working. I continue to take it hoping to stay cancer-free. | F | 44 | 14 months | 11/2/2004 | 4 | breast cancer | The side effects that I experienced were not too bad. I had "hot flashes" fairly often. I stayed on it for my designated five years. | Unknown to me, my radiologists were watching "somethings" in my liver for two years. Two months after I got off of the Nolvadex, we discovered that I have 5 cancerous tumors in my liver. They began to grow more after I got off of the Nolvadex. Now I am on Arimidex. I've been on the Arimidex since March and so far the tumors have not grown. | F | 49 | 8 months | 10/24/2002 | 4 | Multifocal lobular carcinoma insitu | Hot flashes, water retention, weight gain, vaginal dryness and all over skin dryness | After about 2 years the hot flashes decreased in intensity. I also take trazadone to help with the hot flashes and am now taking Dyazide to help with the water retention | F | 52 | 3 years | 10/14/2002 | 1 | Breast cancer - 2nd reoccurence | I started to take Tamoxifen in April 2000. At that time I was having some perimenopausal symptoms but was having normal menstrual periods. From that point on I had bleeding every January, May and August, somewhat like a period. After each of these bleeding episodes, I had a pelvic ultrasound which showed ovarian cysts and once some thickening of the uterine wall. In May, 2002 I experienced severe cramping (something like early labor pains). These lasted for 2 days. On the 3rd day I contacted the oncologist and shortly afterwards had a clotty hemorrhagic discharge. I ended up in the ER having an ultrasound. It showed a mass in the uterus. The following D and C and hysteroscopy resulted in no abnormal tissue. At that point my doctor took me off Tamoxifen and I am now on Arimidex, which so far has been working well. | There are a lot of risks with Tamoxifen. With a maternal grandmother dying of uterine cancer, I don't think it was right for me. Also I have read research that patients on Tamoxifen with Ductal Carcinoma in Situ have more side effects than other cancers. This was the case with me. | F | 52 | 2 years | 7/12/2002 | 1 | recovering from breast cancer | I started vaginal bleeding again, after having gone through menopause 1 1/2 years earlier. I had adenomyosis. I had chemical depression. I was not a candidate for this drug. I had too many side effects. | F | 54 | 8 months | 6/6/2002 |
| Key to
ratings: 5-Very Satisfied: this medicine cured me or helped me a great deal. 4-Satisfied: this medicine helped. 3-Somewhat Satisfied: this medicine helped somewhat. 2-Not Satisfied: this medicine did not work to my satisfaction. 1-Dissatisfied: I would not recommend taking this medicine. |