Forum Discussion
Lower dose tamoxifen
I have taken tamoxifen 20mg for 6 years,I have now had a year off tamoxifen as I stopped taking due to side effects, my oncologist would like me to persist and start taking it again as I’m in my 40s a...
@Milly21 You are lucky you could tolerate 20mg for as long as 6 years before it got too much. 15 weeks is all I could take before the oncologist dropped my dose to 10mg. Then another 15 weeks and he dropped it altogether. Unfortunately that didn't work either as four months later I had a recurrence. He now says we have to find a way to stay on it. So I'm now on 10mg every second day (equiv 5mg) and will take regular breaks from it when it gets too much. Better to be on something than nothing but I can't say if it will be successful. There's not many options as I'm only in my 40's, but they have had success in American studies so I'm hopeful.
Esjay - this is really disheartening to hear how hard its been for you... - may I ask what's the side effects have been? I just with with my oncologist for the 1st time and she claimed most women in premenopause like me don't have side effects as well...
Hello Shae
Note your oncologist said 'most'.They can't say until someone tries tamoxifen how that individual will react. Personally I don't know what she means as I know several premenopausal women struggling with tamoxifen. I certainly can vouch that tamoxifen has nearly finished me off and I'm definitely years away from menopause.
If you want to read my full story, feel free to look at my profile as I've detailed my journey there.
Just to give you a quick summary though,
Two years ago I started 20mg tamoxifen, and slowly but surely over the next 15 weeks it proceeded to shut my brain down. The last three weeks of that, I was a depressed zombie..sleeping 19 hrs a day and couldn't take in information off a page. I had become unable to even get a meal or do my washing. Within 3 days of stopping it, I was almost my old self again!
I had a 3 month break from it while I had surgery & went back on a 10mg dose. This seemed better although I was battling brain fog and insomnia, but 6 weeks later I began to bleed heavily and was in excruciating pain during my period each month. Again I tried to endure, but at the 15 week mark I had to go off the tamoxifen as I was now hemoragging and I had to use a drug called TXA to try and control the bleeding while I waited a few weeks to have a hysterectomy (leaving my ovaries). The pathology results of the hysterectomy? A huge 5cm fibroid, polyps, and stage 4 endometriosis! Which I had no symptoms of prior to starting the tamoxifen.
Needless to say, I was advised by my oncologist that I needed my hormones and that the risks of taking tamoxifen now outweighed any benefits.
Unfortunately, 4 months later I had a recurrence. 6 lumps were found on the chest wall and I had two more surgeries to remove them. I had 3 weeks radiation then back on a low dose of tamoxifen (10 mg x 2 days a week).
This seemed to be going well, so at the 15 week mark, the dose was increased to 10 mg x 5 days a week. Once again, slowly but surely down I went again! Severe joint and muscle pain that was even painful when out walking, and would wake me during the night, and then fatigue that meant I was sleeping up to lunchtime each day. I was now in fight mode..fighting fatigue, fighting pain, fighting depression.Not quality of life for looking after a family of teenagers!
Three weeks ago, I was told to drop it back, so are now taking 10mg x 4 days and the fatigue & pain has reduced substantially. Even mood swings have improved. It is a constant struggle.. side effects certainly aren't over, but I'm hanging in there!
Learning to dance in the rain!
