• tamoxifen

    Asked by jojosmom on Saturday, February 16, 2013


    I just finished chemo 3 weeks ago and go monday to see when I start radiation. I've been told I'll be taking tamoxifen for 5 yrs. I've also heard it has bad side effects & weight gain. I have already gained 15 lbs from chemo and don't want to gain more. What have your experiences been with tamoxifen, is there something else I could take?

    20 Answers from the Community

    20 answers
    • Nomadicme's Avatar

      Unfortunately no, if you're pre menopausal you take tamoxifen (and be thankful there,is something you can take, as our triple negative sisters would jump at the chance to take something). If you're post menopausal you will go on an aromatase inhibitor.

      I'm on tamoxifen, I hate it, but I'm sticking to it (need to take 2 extra meds to control the side effects). I didn't gain weight during chemo, but gained weight after starting the tamoxifen. I'm now on a diet.

      A randomized trial showed there is no weight gain due to,tamoxifen. Then why so many of us patients complain about it? It has been suggested that we eat more and exercise less than we used to before BC, possibly because of fears with our operations, lack of energy, depression. I did find a scientific article that suggests tamoxifen has a negative impact on lean muscle mass.

      I suggest you join the rest of us in calorie controlled healthy eating and exercise. Here's an article about myths that get in the way of weight loss, hope you find it helpful:

      Just look at this as an opportunity to be healthy and continue fighting.

      over 5 years ago
    • AlizaMLS's Avatar

      Dear Jojosmom,

      It's interesting to hear from different people especially when there's a conflict of opinion. Nomadicme and I have different answers re Tamoxifen. I was told by my breast surgeon that oncologists are reluctant to prescribe Tamoxifen for women who are pre-menopausal and they use aromatase inhibitors for that demographic. I myself refuse to take Tamoxifen and will only take an aromitase inhibitor, not because of weight gain but because 2 close friends have/are taking it and are both losing the ability to walk. One is a breast cancer patient who developed Reflex Sympathetic Dystrophy and the other is my Rabbi's wife who's a Hodgkin's disease patient who's going to soon be wheelchair bound.

      My breast surgeon (haven't seen the oncologist at my hospital yet) told me that because of the side effects that most women give up on Tamoxifen. I must admit I need to do more of my own research re aromitase inhibitors (I'm a trained [retired] Medical Librarian) before I see my own hematologist (I also have Lupus) and will see him before seeing the oncologist at the hospital where my cancer is being treated.

      The best advice I have for you is 1) To research as thoroughly as you can on your own, 2) to wait and see what others say (some people on this site are medical professionals who've had patients taking these drugs) and 3) try to make the best determination of what you can live with-it's not easy.

      Wishing you well,

      over 5 years ago
    • nancyjac's Avatar

      I took tamoxifen the first time I had breast cancer almost 20 years. I had no side effects and didn't gain any weight. If you are pre menopausal, tamoxifen is your best bet. The other choice, aromatase inhibitors actually deplete estrogen, which can cause weight gain, while tamoxifen just blocks it from attaching to cell receptors.

      over 5 years ago
    • karen1956's Avatar

      I only took tamox for 2 months and I didn't gain weight....rather lost a couple pounds....my biggest side effect was GI stuff so I went back on AI's....I tried them all!!! Please remember that not everyone suffers bad side effects on tamox (or the AI's)...its as individual as the person is.....If you are pre-menopausal tamox is the choice for you...if you are post menopausal the AI's are also an aoption......

      over 5 years ago
    • janigirl's Avatar

      I have been on tamoxifen for 22 months and haven't gained any weight. In fact I lost some. The big side effect for me has been hot flashes and dryness. All tolerable. Good luck to you

      over 5 years ago
    • MollyAWelsh's Avatar

      I have been on Tamoxifen for 8 months. I lost 30 pounds before Tamoxifen and lost 30 pounds since starting it. I am still losing weight. I have had no side effects.

      over 5 years ago
    • Myungclas' Avatar

      I've been on tamoxifen for nearly 3 years and have very few side effects...hot flashes and dryness. I have gained a little weight since finishing chemo and starting the tamoxifen, but that could also be attributed to my age. And I certainly wouldn't consider it a reason not to take a pill that reduces my risk of recurrence.

      over 5 years ago
    • Gena's Avatar

      I took tamoxifen and only had hot flashes. No weight gain.

      over 5 years ago
    • Nancebeth's Avatar

      I was taking Tamoxifen as I am also pre-menopausal. Have never heard of anyone taking it who are post menopasusal. They usually take an AI. I did not gain weight on Tamoxifen, I did on chemo though. However, I stopped taking Tamoxifen because I could not handle the other side effects I had with it. I had disabling headaches, chills, sweats, nausea, and murderous rage. I was miserable.

      over 5 years ago
    • suebo's Avatar

      My mother took tamoxifen for 5 years and died of uterine/ovarian cancer. If you google it you will find that it has been linked to uterine cancer -- as far back as the 80's. My mother was never told about this risk. Not saying you shouldn't take it -- just saying do your research. Google everything -- the internet is great!

      over 5 years ago
    • Xmom7's Avatar

      I've been taking tamoxifen for only 25 days. So far, only woke up 2 nights, briefly, feeling warmth, like a minor hot flash. I am 67, and very postmenopausal, but ER and PR positive. So as long as there is any estrogen running around inside me, tamoxifen is on my daily meds.

      over 5 years ago
    • luvnlife's Avatar

      I took Tamoxifen for 5 years. It seemed to make me retain water, always puffy, so took a water pill throughout and seemed normal then. Horrible hot flashes like every 8 minutes. You have to be able to laugh at yourself. It went away after I stopped.
      I was told having breast cancer made me more suspectible to ovarian cancer and Tamoxifen can cause Uterine cancer, and they didnt want me to be producing estrogen, so I should have a hysterectomy. They tried giving me Lupron instead first, but I was allergic, which come to find out was probably a blessing based on bad press I later heard about Lupron. I had the hysterectomy one year after mastectomy.
      Educate yourself, I know it's hard and it sucks too, hold your head high and have the fire within to win. You will be amazed what you can handle. Have the best day ever.

      over 5 years ago
    • chutzpah's Avatar

      I am post menopausal and have been taking tamoxifen since May. The SE's I have experienced are hot flashes, night sweats, mood swings (oy vey those mood swings got to take ativan to keep from swinging at stupid people :) Tried femera but couldn't tolerate it. My last scan showed that the tamoxifen ws doing it's jop and there was no progression on my mets.

      over 5 years ago
    • Tania's Avatar

      Hi jojosmom:
      I have been taking tamoxifen for 4 years I have one more year to go. I am a breast cancer survior. The only side effects I have had is I get hot flashes in the middle of the night that I wish I could put my head in the ice box. I do yoga at home every night and I have always watched what I eat but other then the hot flashes I do not have other problems. Please keep me posted and good luck stay strong. Hugs from Miami, Florida (Tania)

      over 5 years ago
    • SandiD's Avatar

      The best site I have found for reliable info on breast cancer is www.breastcancer.org. Please check it out. We do not all get side effects. I am on my 3rd Aromatase inhibitor because of side effects, but I am post menopausal. Discuss your concerns with your oncologist. They are the experts, not us. You want to do all you can to keep up this fight! Good luck yo you!

      over 5 years ago
    • ladybug's Avatar

      I too am postmenopausal (67 yrs old) and have been on Tamoxifen for a year with only occasional hot flashes and dryness...nothing that is problematic for me. I did not have chemo...only radiation. My radiation oncologist recommended waiting to begin Tamoxifen until the radiation was done so that it would be easier to track side effects. I've gained no weight and have learned from a health class offered through our local cancer center that exercise and healthy food choices are the best things we can be doing for ourselves as we go forward. As others have said, talk with your doctors and the well-informed staff at your treatment center.

      over 5 years ago
    • debco148's Avatar

      I have been taking Tamoxifen since November. I really thought I'd get the side effects as well, I always held on to weight with monthly hormone flucuations and it was always so frustrating. I have to say no hot flashes, and my weight seems to be pretty stable, actually easier to maintain than it was during PMS. I do try to eat very healthy, lots of greens, cut back on meat (about 20% of my food consumption).. only non processed foods. Also, I try to drink lots of water. I take the pill at around 10pm every night and within an hour, I'm nice and sleepy which is good, since I didn't sleep well at all during chemo, the steroids, etc made me too hyper. Also, I am exercising a lot.. 4-5 hrs/week of Zumba or some light weight training. This is helping too. I also find that magnesium, B vitamins, and D are helping me as well.

      over 5 years ago
    • Paw's Avatar

      Hi jojosmom mom. I was diagnosed with breast cancer in 1998. I had a lumpectomy, chemo, radiation and took tamoxifen for five years. I gained about 15-20 pounds over the next five years but I didn't have any complications while taking it. After taking tamoxifen for 5 years, I urge every cancer patient to follow up with some kind of medication to keep the cancer away or under control and monitor the whole body. In 2011, I was diagnosed with metastatic cancer of the breast. The cancer had spread to my liver, lungs, and spine. I had mammograms done every year from[phone number redacted]. Nothing was every found in my breast. If I had my body scanned or continued taking tamoxifen, the cancer probably wouldn't have surfaced. I don't want any body to go through what I went through because of a lack of knowledge. There are many medications out there for you to take. Discuss the options with your onc. Some oncs are so quick just to prescribe tamoxifen because its the common - normal thing to do. I pray that you and my what's next family be blessed with love, faith, and healing.

      over 5 years ago
    • whirl's Avatar

      I would at least try the tamoxifen. See how you get along with the med. My body does not tolerate medications and even many supplements I get nasty side effects. For me I finally chose to go what I call naked with lots of prayer. I could not tolerate the AL. I am still getting nasty hot flashes at 71. I do live at the gym doing about 30-40 miles aweek. Eat healty and keep my weight probably slightly underweight. I too gained weight with chemo about 10# even with 30 mile weeks. I have finally lost the 10 three years out. Probably what I am doing is not the best of decisions but I have 12-18 hours days, as I am a care giver to a very sick son and a sister in a wheel chair. I still work a couple days aweek.
      One questions among others that were suggested in the other answers would be ask what they have seen with arthritis and increase neuropathy long term with the meds. I have a girl friend in a wheel chair and MD said was the neuropathy from the meds. Another friend has had knee surgery and foot surgery from arthritis. Good luck

      over 5 years ago
    • carter4's Avatar

      you have to watch your weight - tamoxifen cleared my skin mets - big time - I also have to take Lupron shots - make sure you take Effexor for mood swings - all of these hormone meds can send you sideways - it is keeping me alive - hot flashes are bad though - they have now added Afinitor to all my meds - but I am confused because it is approved for post not pre menopausal. don
      t be scared of tamoxifen - it is the least of your worries.

      over 5 years ago

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