I took Tamoxifen for 10 years and have had almost all the symptoms described by others since I stopped taking it 5 months ago. Does anyone have any idea as to how long these symptoms last? Do they stop or just go on?
I am not a doctor, but I expect that some symptoms may remain and that others will go. Perhaps if you mention the symptoms that you've had, others will tell you of their experiences?
Please keep in touch and let us know if things improve. We are always here for you.
I can't seem to find all the posts I originally saw where lots of symptoms were listed by others.
My symptoms are: extreme fatigue, very low moods, often not wanting to go out, variable joint pain, sore and watery eyes, bloating, my mind racing all the time, memory loss (brain fog), irritable a lot of the time.
I've also had vaginal bleeding which a gynae consultant says is adenomyosis which normally occurs only in pre-menopausal women. I am 71. When I told my breast cancer consultant this, she said stop taking the Tamoxifen at once. That was just as I was due to stop taking Tamoxifen after 10 years anyway.
I seem to have misread your initial post. I understood that you only developed these symptoms, after you stopped taking Tamoxifen, but it seems that you had them before you stopped. It is fortunate that you had amost finished taking them for the 10 years anyway.
As to how long these symptoms will last, now that you've finished taking the Tamoxifen, it seems to vary tremendously from one person to another. I am not a doctor. I have had 2 bouts of breast cancer. I took Tamoxifen after the first bout, but stopped taking it a year later, when I found a second cancer. I had a double mastectomy and took Letrozole for another 6 and a half years.
I no longer get the same mental problems that I did with Tamoxifen, but I do still get the night sweats, memory loss, loss of concentration, dry mouth and dry eyes. When I started on Letrozole, my joint problems increased significantly, to the point that I had to have both of my knees replaced. I still have considerable problems with nearly all of my joints, especially my back, legs and arms. I was diagnosed 13 years ago and stopped taking the Letrozole in July 2017. I am now 73.
As I said, not everyone has the same long term effects, but I still feel fortunate to be here.
Do please keep in touch and let us know how you progress. Here's hoping that your symptoms will settle with time.
I have only had all these symptoms since I stopped taking tamoxifen.
The bleeding episode was just before I was due to stop taking Tamoxifen and I was referred to a gynaecologist in case it was uterine cancer (which it wasn't). There is some research which shows that there could be a link with Tamoxifen which is why I was told to stop taking it.
All the symptoms I listed have occurred since I stopped the tamoxifen.
I had all of these symptoms and more when I was taking Tamoxifen - the only one that I never had was the bleeding, but wasn't aware of any additional symptoms when I stopped. Maybe this was because I went straight on to Letrozole? However, I didn't have any additional symptoms when I stopped taking Letrozole either.
There is a definite tie in with uterine cancer, when taking Tamoxifen. I hope that someone comes along soon, with their experiences and that things settle down for you soon.
