I have stopped taking tamoxifen after 4 months

<Roci> Ifyou can't do it, you can't do it. I stopped it the first time after a couple weeks, then it took me a year before I tried again. (Don't recommend that.) What I didn't realize was the emotional and mental chaos the dx had thrown me into. I had no idea that many of us experience PTSD-like symptoms often presenting when active treatment ends (and coincidentally when we start long-term hormonal therapy). I was near catatonic the day my DD made a desperate call to my brother the onc. He said I was experiencing acute anxiety and depression and that it would take meds and counseling to pull me out.

This treatment is not easy. I'm sure the difficulty is compounded because you are forced to deal with this hideous beast at such a young age. It is not fair. I'm really so sorry.

My suggestion is to take a bit of time to sort out what is and what isn't a side effect of Tamoxifen. I tried again because of the thought of not doing all I could to prevent recurrence was a heavier monkey on my back than just taking the stupid pill. The second time I tried I was in a much better place emotionally and my side effects were the normal hot flashes and such.

Sending up good vibes for you today.

I have been on tamoxifen 11 months now, and as long as the bone scans keep showing the cancer getting smaller, I will stay on it. the side effects aren't as bad as trying to walk with that durn lump of cancer at the base of my spine hurting if I walk very far. I realize that the side effects are different for different people, good luck with what ever they give you instead.

Hello Roci-I was on Tamoxifen for only 10 months (less than 1 year from my MX) with mild side effects when I was diagnosed with a reoccurrence. Getting that phone call & the intense feeling of being told Cancer is back was worse to me than any hot flash or other side effect. I buckeled to my knees, literally lost my breadth and felt like someone punched me in the gut at the same time. I never want to feel that way again. I was in fog until I had my 2nd surgery, removal of implant & 28 Rad treatments. I lost another 4 months of enjoying life until my last Rad treatment on February 6, 2017. Looking back, I don't even know how I got through it (Holidays/New Year) but I did and now I get the Lupron shot and take Femara. I am 48 and in medically induced menopause but I am ok with that now.

Regarding Tamoxifen, it was recommended to me to take Teva generic brand since it had the fewest side effects. I now take the Teva generic for Femara (letrozole) so maybe if you switch brands you will have better results.

I know it's not easy but look at the benefits vs. the risks. Wishing you well..Vic

Roci, I want to emphasize that you need to have this conversation with the oncologist, not the nurse. They are pretty programmed to tell you to take the drugs without necessarily understanding your particular case, and deeper questions on Tamoxifen efficacy with HER2. And if your doc blows off your questions, get a second opinion.

Hypothyroidism, not hyperthyroidism, would cause weight gain, feeling cold all the time, and lethargy. Hyperthyrodism would cause weight loss and the restlessness and subsequent fatigue that comes from a metabolism in overdrive. Weight gain, due to lowered metabolism that normally comes with age-related lowered estrogen levels, is a SE of both Tamoxifen and AIs.

I lasted a month or two. Couldn't handle it.

hi gals.

I just started Tamoxifen after surgery. I'm a mere 2 weeks in and having numbness and tingling, in my hands and my face. My forehead feels numb, like I got Botox, but I didn't. And sometimes my lips and nose go numb. Anyone have this SE?

I talked to my onco nurse and she said numbness and tingling could be a SE but it's rare. It's pretty significant but I need to stay on this puppy. Oy

Not sure I am much help because I am also having issues with tamoxifen and mood swings / anxiety / irritability right now, but want to say I understand! Anyways I was originally dx at 38, did lumpectomy/chemo/radiation, and then tamoxifen. I was expecting bad side effects, but already struggling with depression I found I actually might have felt more stable on the tamoxifen. However, I had been trying to conceive a child (I have none) before the dx and so wanted to try again so stopped the tamoxifen after about a year (I think).

Fast forward, and 4 years after original dx I had a recurrence in the same breast, did mastectomy, more chemo, and now back on tamoxifen. Now I am 43, and its HORMONE HELL. I had a meltdown due to stress at work and I don't think my 26 y.o. male boss understood at all.

Trying to get hold of my oncologist to find out if there is ANYTHING that I can do. Did you stop the tamoxifen long enough to see if you actually felt any better or not? I ask because the chemo usually causes chemopause (for me it was 10 months the first time before my periods returned) and your symptoms could be from the chemopause not the tamoxifen. And if it is the tamoxifen and not the chemopause you could go for a LHRH agonist (which induces menopause - but only as long as they give you the injections) + aromatese inhibitor.

For me I'm fearing its just the menopause but is it too little estrogen or too much? (in which case worry about recurrence, and tamoxifen not able to handle the load!!) And anything that a normal person could do to deal with menopause (HRT, black cohosh, etc.) are supposed to be no-nos for breast cancer.

Intuitively suppressing one hormone instead of finding out why the hormone imbalance occurred and how to balance them naturally just seems like the wrong idea.