Extreme fatigue on hormonal therapy

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Hi everyone. I have been on toremifene, a drug very similar to tamoxifen, since early March. I'm not taking tamoxifen because my antidepressant would interfere with it working, a problem you don't have with toremifene. My first few weeks on toremifene were ok, but I am now overcome with fatigue. It's hard for me to do basic errands, and I have to take naps daily. My vitality is just zapped. My doctor is trying me on stimulants, which only helps a little and makes me feel drugged. Can anything be done about this kind of fatigue? For those of you who eventually adjusted to hormone therapy, how long did it take?


I'm starting to feel hopeless about hormone therapy because I've already been tried on ovarian suppression and aromatase inhibitors, and I had to be taken off that after six months because of the many side effects I had. In addition to fatigue, toremifene is also causing nausea, loss of appetite, headaches, and irritability. I feel like I could manage those side effects, but the fatigue is the worst side effect of all, and I can't imagine living the next 4.5 years like this.

Comments

  • Totallytubular
    Totallytubular Member Posts: 62
    edited April 2021

    hi orange flower,

    I've had lots of fatigue with hormone therapy but not as severe as what you are mentioning.

    eventually my body adjusted. I've had low mood, insomnia and those good things in addition,

    although I am feeling pretty well now. I changed to aromasin from arimidex that helped, sometimes

    you need to try a different med. I also take an anti-depressant. I hope you will talk to your doctor or onc.

    I did often or nurse. I hope you can hang in there and feel better.

    best wishes,

    mb

  • Salamandra
    Salamandra Member Posts: 1,444
    edited April 2021

    So sorry to hear it's just gotten worse :(

    The fatigue was what finally got me from tamoxifen to toremifene, but clearly every body is different.

    One thing I had tried on the tamoxifen (which didn't end up working, but who knows, maybe worth a try) was switching the generic brands of the drug, switching the time of day, and just lowering the dose - with the idea that either my body might be able to deal with starting with a low dose and gradual build up, or at least a low dose would be better than nothing if I could tolerate it.

    Finally, my understanding is that the contraindication of tamoxifen and bupropion is that the bupropion might inhibit the effects of the tamoxifen. But I think that's based on the chemical pathways, not on human studies, and even if/when that is the case, it wouldn't necessarily impact all women equally. But the combination wouldn't actually cause harm, just a possibility of less/little/no benefit from the tamoxifen. Well we already know there's a possibility of less/little/no benefit from these drugs just from the luck of the draw. I wonder whether it might be worse trying tamoxifen as a last resort. If you have unpleasant side effects it probably wouldn't make sense to stick out for such an uncertain benefit, but if you are lucky and you are one of those for whom it's like a sugar pill... it might help and it won't hurt?


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