I had to throw in the towel on AI's after two years. I had many unpleasant side effects and they simply did not fade.
So the doctor wants me to try Tamoxifen. I'm beginning to think that oncologists just can't bear to be honest about these drugs, because I'm reading lots of negatives about Tamoxifen as well.
I understand that this doctor wants women to keep taking these drugs. What I want him to understand is that quality of life counts along with length of life. I sailed through chemo, but AI's made me miserable. If Tamoxifen makes me miserable -- I'm not going to continue taking it, period.
The idea that women simply forget to take Tamoxifen over time makes the person writing it sound out of touch. If you talk to any woman who is taking Tamoxifen -- and I have talked with several -- and yes, I know this does not constitute a study -- the commentary is heavily weighted toward the negative. The side effects are considerable. Everything I have read about Tamoxifen states it is well tolerated with few to no side effects. I've never gone against medical advice but after only 8 months on this drug my quality of life was so poor that I decided I could no longer take it. I have permanent damage in my hands from the arthritis it has caused. Since stopping a little over two months ago I am feeling much, much better. A former marathon runner who was running 65 miles a week when dx'd with breast cancer, I was proud that I raced a 5K midway through IV chemo just to be able to say I did. I could not even run 2 miles after 8 months on Tamoxifen without spending the entire next day in bed sleeping. It took me two whole days to recover from a short run. Six weeks after stopping Tamoxifen, I was able to go out and run seven miles and then went in the following day and worked a double shift (I am a nurse). The worst part was my doctor denying that Tamoxifen had anything to do with my fatigue, my hand pain, joint pain in my shoulders, hips, and spine, etc. She told me my complaints were due to menopause. Going off the Tamoxifen for a four week trial convinced me otherwise. Talking to other women with the very same complaints has me wondering why doctors are not being honest with patients about the side effects which can be intolerable.
These meds are brutal. I was on Femara for two years and simply could not tolerate the many side effects I had any longer. Now I'm on Tamoxifen and it's all starting all over again. These meds have been far worse for me than any of the three chemotherapies I had.
It's a CHOICE. I may well choose not to take Tamoxifen either, but I'm not "forgetting."
Hi everyone,
This is the 1st time I writing down some of my feeling sabout this, and I have a few...
I was diagnosed 2 years ago, stage 3.5, I had 2 forms of Chemo (one leaving me with hand and foot syndrome) and a bilateral mastectomy(? - what did someone call it, brain fog ;-) I only needed the one but after having core biopsies during treatment I opted for the two and I also had a clearance. I then had radiotherapy before starting tomoxifen.
I have had one issue after another and could talk about them all but this comment is on tomoxifen! I am angered at the suggestion in the news today that women should be put on this as a preventative and hurt by the doctors comment on women forgetting to take the drug.
I have been on and off it for 16 months. Due to some of the other things my body was dealing with at the beginning I didn't relate some of the side effects to tomoxifen but this time (November 10 to date) I can only relate them to the drug.
I was on and off it due to severe bleeding and on the third time was offered an abolation, I said yes even although I knew I would be putting myself in a bad place - if I were to get the rare side effect of uterine cancer would I know? I went for it as the bleeding was traumatising everyone in the house. But once back on the tomoxifen the side effects just rolled on in.
I have had to get glasses, the pain is there (but because I am on approx 25 pain killers a day because of the hands and foot syndrome they're masked), brain fog is getting worse, flushes aren't too bad BUT the fatigue is really bad! It isn't that bad that I don't get out of bed, it is more that I psychologically am finding it one of the hardest things about this drug.
As others have commented, anytime off this drug makes you feel so much better, almost normal - I have now been there 3 times but due to the aggressive form of cancer I had I am trying to continue. I'm not sure that that will do me any good, I am waiting results from biopsies from under my other arm! I truly hope that this is not a result of the on and off journey I have had with tomoxifen.
Should we be made more aware of what the possibilities are when we start on any of the journeys we have to go on when diagnosed? I feel that we do, they can't make us understand what it will be like but they can give us informed choice.
You see Doctor, when women stop taking it, its because they are now informed and have a choice!
Paula
I'm sorry you're having such a hard time on the Tamoxifen - it doesn't seem fair, does it, after everything else you've been through, that the treatment is so difficult? I hope you can get off it soon, and that your biopsy is negative (as, thankfully, about 85% of breast biopsies are...) Take care- PJH
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PJH
PJH
You are exactly right Robin! While some women have few side effect on Tamoxifen, some of us have more than one side effect. I have been struggling on Tamoxifen for over a year and I am unsure that I can convince myself to continue for another 4 years.
It causes depression, has ruined my sex life, causing vaginitis, lack of sex drive, joint pain, hot flashes, and an aggravation of my rosacea. One of these side effects is annoying enough....dealing with several of them constantly and over such a long period of time is exhausting.
I have been on tamoxifen for 2 years and I am considering stopping the drug. My side affects have been horrible...constant pain in my joints, it has ruined my fingernails, made my hair fall out, ruined my sex life and caused vaginal issues. I have hot flashes and worse than that I can't tolerate the heat. When I work outside in the heat I get physically ill. Since I have always been a sun lover I have to believe it is the medication. My cancer was caught at a very early stage and I have to wonder what the consequences will be if I stop the medication. I haven't seen any studies on this issue. If someone has seen a study, please put it on this site so I may read it.
Sheila, there's good data, collected over many years, that shows the consequences of stopping tamoxifen; your oncologist should be able to give you some statistics on this. Once you have those stats, you'll be well informed and able to weigh those nasty side effects, vs. the protection against recurrence tamoxifen gives you. Good luck - PJH
I too have been taking this drug for a little over two years, and have experienced similar side effects -- weight gain, hair thinning, sickening hot flashes -- especialy in war,. humid weather. The scariest part has beeen incresing "brain fogs."
Women don't "forget" to take the drug.-- What the doctor who wrote column fails to say is that the side efects worsen over time -- that accounts for the increased number of women who "forget" to take the drug over the years.
i have been taking tamoxifan for only 6 months and the side effects are hideous the bone and joint pain is intolerable a 10 minuite walk then i have to sit down for an hour im only 50 and feel like a 90 year old woman.ive stopped taking the tamoxifan against my oncologists wishes..but he doesnt have to live with a poor quality of life as i do.. im happy to take my chances the chemo radiation and mastectomy were all preferable than tamoxifan.i feel cross that the doctors dont tell you enough about the vile side effects of the cocktail of drugs we are given
I'm so sorry you've had such a severe reaction, Jacki - unfortunately, doctors never know who'll have significant side effects, and who'll fly through treatment with no side effects at all. I think they err on the side of not stressing side effects as they can then become a self-fulfilling prophecy... Quality of life is indeed important; and you've done what'as right for you. Good luck going forward- PJH
I was diagenozed with brest cancer 2 years ago. I am on Arimidex daily and Zometa every 6 months. It is ok to continue to take Caltrate if one of the ingradients is the titanium dioxide?
Thank you, Nadia
P.S. I tried the ASK box, but did not work
Hi Nadia - Those of us answering questions here aren't medically trained; we're simply well-read breast cancer survivors. As with any medicine, either prescription, or OTC; or supplement, you need to clear it with your oncologist before taking. Take care- PJH
Thank you for your time. I was thinking that we all should be aweare about this titanium dioxide, that is concidered cancerous, and is an ingredient of almoust all the whoite pills (and food!). I just discovered this, I did not have a chance to talk to my oncologist.
Thank you again,
Nadia