User Reviews for Tamoxifen
Also known as: Soltamox
The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.
|Breast Cancer, Adjuvant||3 reviews||23 medications|
|Breast Cancer, Prevention||8 reviews||1 medications|
|Breast Cancer||51 reviews||69 medications|
|Summary of Tamoxifen reviews||6.1||62 reviews|
Reviews for Tamoxifen
For Breast Cancer: "I was diagnosed with breast cancer earlier this year. I’ve already had a nipple sparring mastectomy. My doctor recommended chemo, but I refused. I’m only stage 0, stage 1, and my lymph nodes came back negative. Now my Oncologist wants me to take Tamoxifen for 10 years. Most of the reviews here are negative, but I will give it a try, and hope for the best."
For Breast Cancer: "My mom took this drug for 5 years, and in 2017 was diagnosed with a rare form of uterine cancer called uterine carcinosarcoma. Was her uterine cancer was caused by the tamoxifen? My mother was a beautiful 61 year old woman that was full of life but, sadly I lost her because of tamoxifen. They say its rare to develop uterine cancer from tamoxifen but I just lost my mom. It's not that rare do your research a lot of women have been harmed by this drug."
For Breast Cancer: "About 3 weeks after starting tamoxifin, I would wake up at night with night sweats and just insomnia and I noticed that I was definitely more hungry and craving junk food which in turn caused me to gain about 5 pounds. I could have lived with these side effects but then I started flying off the handle with my children at the drop of a hat. My reactions were crazy. I am normally generally mellow and easy going. Then after about 4 months I noticed I was having trouble focusing at work and was in a brain fog. It was mild at first but continued to progress to where I would fall asleep regularly at my desk. I decided for the sake of my new job, I am a widow and sole provider, that I needed to go off off it for awhile. After about 2 weeks my life started returning to normal. I occasionally try to take it again but then after a few weeks of starting it the side affects return. I really wish more options were available to me to prevent the recurrence of breast cancer."
For Breast Cancer: "Was on tamoxifen for five hellish weeks and had every side effect except hot flashes. My body hurt, I couldn't sleep, I was angry all of the time so my oncologist wisely agreed with my decision to stop the drug. Quality of life was so bad."
For Breast Cancer: "Had hot flashes or hot all the time, thinning hair, overwhelming fatigue, pain in the jaw, confusion and strange thinking. Thought and said things differently than I normally would have and I couldn't sleep even though I was always tired. Didn't have any energy and I always had energy before but it was a chore just to make myself move. Kept saying I'm so tired. Just found these sites and it is helping me to understand how Tamoxifen affects do many so differently. Thank God my husband and family were kind during this time. I was on Tamoxifen about 20 months when I asked the doctor to let me get off of it and since I am 80 she decided to honor my request."
For Breast Cancer: "I took Tamoxifen for 3 years. I took myself off of it because of the painful side effects. They began within 3-4 months after starting the med. The worse for me was the bone pain that would be so severe that it would wake me up during the night. Also the severe pelvic pain would be so severe at times it would literally bring me to my knees suddenly. I eventually took myself off the Tamoxifen and within a few weeks all side effects were gone. Within a few months I started to fracture bones and developed osteopenia. 5 years later I am borderline osteoporosis and the cancer never really left. Someone mentioned having pain in their jaw. Now they want me to take Tamoxifen or an aromatase inhibitor again. I am considering taking one of the above only 2-3 days a week. Has anyone done that I would appreciate it if anyone has a comment on taking less of a dosage or less frequency. Thank You"
For Breast Cancer: "I was diagnosed for her2-positive breast cancer and October of 2017 I went through chemo as well as radiation chemo which was a horrible radiation that my body tolerated 4 months ago. I was introduced to this drug tamoxifen. I've been feeling horrible every since. I feel like I have had a stroke on my right side my brain hurts I have trouble thinking even completing daily tasks. I wake up to dizzy spells and hot flashes. Blurred vision, change in color vision, stomach pain, Headache.Hot flashes, vaginal discharge. Pain or bone pain. Loss of interest in sex Trouble with sleeping. I will not continue treatment it's not worth it."
For Breast Cancer: "I have been on this drug for one year. Have pain, weight gain, lack of sleep, tiredness, but I am alive. I think it gets easier as time passes. I try to remain positive."
For Breast Cancer: "For those of you who only had menopausal side effects - hot flashes, night sweats, insomnia, dry skin - great. I had all that plus anxiety attacks, depression, headaches that made migraines seem like a walk in the part, hair loss, muscle aches and cramps, fatigue that made it difficult to just walk to the bathroom, blurred vision (I had already had cataracts removed). The list goes on and on, but to compound it, when I told my doctors, they said, "oh, tamoxifen doesn't cause that. I gave them the list of side effects with the ones I had marked, and it was thrown in the waste basket in front of me. Now that I have quit taking it, the side effects come and go. They can and do return over and over again about every two - three months, and last two - three months. My doctors told me none of this, so if you are contemplating taking it, do the research first. I wish I had."
For Breast Cancer: "I had Breast Cancer in 2004 Ductal in situ so I was very lucky I had a breast removal then radiation and 5 years on Tamoxifen. I was 48 at the time but very fit and had already gone through an early menopause so the drug did give me symptoms although I had not suffered any when going through the menopause I had hot flushes mild night sweats mood swings and put on a lot of weight! But it was all worth it to survive and I soon got my figure back when I stopped it after 5 years. All I would say is treat these side effects as the menopause and you will find they ease. Avoid spicy, food, alcohol and wear layers of clothes so when you get hot you can slip something off. Stay very active my own weight gain happened when I slowed up my exercise also I found sage tea very good for cooling down. Please, Ladies, stick with it and stay well"
For Breast Cancer: "I have been on tamoxifen for nearly 5 years now , and can honestly say I have not experienced any side effects , I have opted to carry on taking this drug for another 5. years to prevent my breast cancer returning, I do have a bit of trouble sleeping but I am putting that down to going through the change . Reading the comments on here I think that I am 1 of the lucky people that it hasn’t had a horrible effect on ."
For Breast Cancer: "Diagnosed at age 40 (in 2012) with Stage IIa Invasive Ductal Carcinoma. E/P+ HER2 -"
For Breast Cancer: "This drug is nonsense. They tell you the side-effects are minimal and easy to deal with - as long as you tell your doctor. Well, it's been three years and the only thing the oncologist has recommended for me is psychotherapy (apparently because I complain too much). Now I have to have a hysterectomy because I have "unusual" growths in my uterus. I look like I'm seven months pregnant and am now having to shop in the maternity department. I'm not pregnant, BTW. Evert joint in my body aches and I sweat at least a gallon a day. I've had to buy a new mattress and pillows since I ruined them (with night sweats). To top it off, my oncologist doesn't think any of this is caused by Tamoxifen. I am tearing out the little bit of hair I have left."
For Breast Cancer: "I don't like this medicine. The more I took it the more I got side effects. I don't feel myself I'm going to ask my Dr if I can get off it. I've only been taking it for 1 year and I hate it."
For Breast Cancer: "I have been on Tamoxifen for about a year now. I have the hot flashes and the sweats, and oh yes the mood swings, but now I'm experiencing severe temporomandibular joint pain (TMJ). I'm wondering if anyone else has experienced this problem on this medication. If so what did you do to make it go away. 2 weeks of this condition is 2 weeks to long. Any advice would be greatly appreciated. Thanks so much for any suggestions you may have."
For Breast Cancer: "I've been on tamoxifen for 3 1/3 years. In the beginning I was fine, but as years went on I began time have extreme fatigue, feels like it's hard to swallow at times, anxiety, can't drive due to lack of focus, and hot flashes. Oh, I forgot that I gained a lot of weight and I take Zumba classes. I told the dr. that I'm having a hard time driving and he just dismisses what I say. The nurse said that there was another patient complaining about the same thing. I have 6 1/2 more years on this medicine. I'm doing my best!"
For Breast Cancer, Adjuvant: "I had stage 2 grade A IDC with trace evidence in sentinel node, I've been on tamoxifen for 5 years with 5 years left to go. I currently have the following side effects; hot flashes, night sweats, insomnia, fatigue, blurred vision, hair loss, hair thinning, hypertriglyceridemia, bone and joint pain, and can not tolerate drug brand changes, and have had to have a total hysterectomy."
For Breast Cancer: "I was on tamixifen for 5 years- It drove me into severe depression-I was delusional to the point of being in a psychiatric hospital for 1 year-no doctor at the time could find out why I was as I was! I had water retention-weight gain of 25 kilos, Fluid on my lungs-which caused coughing to the point I felt I was suffocating-insomnia, joint pain, nausea and hot flushes and to crown it all skin disorders of which the rash and sores made me look like I had HIV. Bicarbonate of Soda and Lemons and ginger have improved my health!"
For Breast Cancer: "62 yr. old, white female. Stage 2. Tumor and some lymph nodes removed in Feb. 2015. Been on Tamoxifen for 6 days and now the side effects are draining me. Extreme tiredness, itching skin, headaches, arm and leg pain with numbness, dizziness, hot flashes. Having a war with myself about medications and alternative medicine. I was extremely ill with Arimedex, stomach pains radiating to my back. The unconcern of my Oncologist set me off to find alt. methods. I found an excellent alternative med. Dr. And we started cleaning out the estrogen from liver, kidneys, etc.. but having a problem eliminating body fat. My breast surgeon scared me into taking Tamoxifen. Alt. Dr. says there's always other things you can do. I'm torn."
For Breast Cancer: "Just started this 10 days ago. I was so nervous because it seems everyone that posts has a negative side effect. I have none!! Maybe a warm night or 3 but that's been it. It passed 10 minutes later. I also take supplements so that could be helping too. D3, milk thistle, green tea to name a couple."
For Breast Cancer: "I was diagnosed with a small tumor on my left breast (stage one, grade one). Thankfully, early detection at age 41 made my experience much more smooth. The toughest part so far was the early tests and biopsies (only one malignant lump was found). The surgery was a breeze. Radiation was taxing, but I am so thankful that chemo was not necessary. So far, after 3 months of Tamoxifen, I've experienced only one side effect (the occasional hot flash). I have been very lucky so far and hope that cancer never comes back. I was so against taking Tamoxifen, but I am glad that I gave it a try. Stay strong everyone, and I hope this encourages other young bc survivors."
For Breast Cancer: "I found my lump before Christmas. It was in the milk duct, 2 surgeries weeks apart to remove both lumps, painful. Tamoxifen is horrible! Always sweating, barely sleeping. I already had a hard time with insomnia, now this drug has made things worse. Started taking this in April. I will start taking the drug in the morning instead of at night. Hopefully, I may be able to get some sleep through the night without having to change sheets nightly. After readIng the other posts, this explains my constipation, lack of energy. Will see what kind of meds or herbal product I can take for the hot flashes, getting unbearable."
For Breast Cancer: "Its one year im on Tamoxifen . I will manage all side effects that i have as hot flash, join pain , back pain , mood swing . My goal is to live longer and see my son's future . Im 46 year old . I try not to think about pain and side effects till im really get tired from pain . Only thing im scared is pain . The rest i will manage . Good luck to all of you ! Life is beautifull and fight for it ."
For Breast Cancer, Prevention: "I've been taking Tamoxifen for 10 months now. At first, I seemed okay. The doctor prescribed Effexor at the same time to combat any menopausal symptoms. I fell into a bad funk. SEVERE depression and not sleeping. I stopped taking the Effexor (doctor wasn't too happy) thinking that was causing some adverse effects. He put me on Trazodone 50 mg for sleep. That worked for a short period of time so they upped the dosage to 100 mg at night. However, my depression is tenfold. I'm so irritable and angry all the time. The slightest thing sets me off. I can't stand to be around people. I can't concentrate and my appetite has decreased. I've lost about 8 pounds. I just don't feel right, ever, anymore. I have to stay on this for 5 years."
For Breast Cancer: "I have been taking Tax for 6months. I won't lie having a mastectomy was easier then the meds, but the alternative is worst . My biggest complaint is fatigue and moodiness , training for an Half Ironman has it's challenges but I think the daily training helps me in so many ways, I don't have joint pain and other major SE. I like the open discussion format as Doctor's are really up in all of the side effects as each person is different . It is nice to hear from others the mood swings , thought I was gong crazy... Hard on family for sure. I just keep on trucking ... Good to hear from others."
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- Drug class: hormones/antineoplastics