Low dose tamoxifen

I am in the same boat as you.  I was diagnosed a year ago, took 20 mg Tamoxifen for a few months but my osteoarthritis (fingers and feet) worsened consderably.  I also suffered from low grade nausea most of the time and as I am also suffering from fibromyalgia, the tightness in my muscles worsened resulting in painful nocturnal calf and quad cramps. I then dropped the dose to 10 mg/day, but the side effects were still so hard to deal with.  I am currently on 10 mg every second day and I have got a review with my specialist scheduled on 21/10.  The nausea has finally eased and I am enjoying my food again, but I am still struggling with painful joints and at the same time I am scared about a recurrence of the cancer taking a reduced dose. The muscle cramps only occur now and again which is a great relief.  My specialist told me right at the start that quality of life is very important.  This is such a difficult situation to deal with.  I do also get hot flushes but they are not too bad although I think I will struggle more in the warm weather to come.

It's good to hear your symptoms have reduced a little. Since I've reduced to 10 mg my fingers are back to normal but I still get the warm flushes and often end up kicking my doona off during the night. I hope you get some more relief with the 10 mg every second day. I know what you mean - it's a very difficult balancing act trying to preserve some quality of life but also fend off a recurrence. Best wishes to you  :)

I am pleased to hear that you have got relief dropping back to 10mg/day.  I have tried to research low dose Tamoxifen online but there have not been enough large scale clinical trials for the researches to be able to say that the lower dose protects enough.  There probably won't be other trials either - there is no money in it for the pharmaceutical companies to fund trials for this drug unfortunately.
I might add that I was diagnosed with bilateral early stage breast cancer (both breasts) which is really unusual and twice as scary and of course I had to have twice the normal amount of radiation also.  This is possibly due to me taking supplementary oestrogen for far too long (15 years+) as I had very severe menopausal symptoms and my GP kept assuring me that what I was doing was perfectly safe.  There is no history of cancer of any kind in my family, but fortunately a routine mammogram picked it up as I had no symptoms. I am now angry with myself that I did not stop the oestrogen earlier, but I trusted my GP - possibly too much. I'll let you know what my specialist says at my next appointment.  Yes, I know all about the hot doona in the middle of the night ....
All the best to you.

I had a review with my breast surgeon yesterday and had a good discussion about Tamoxifen side effects and taking a lower dose.  He is very compassionate and agreed with me that quality of life has to be one of the priorities in my life.  I simply cannot tolerate even a half dose (10 mg).  My muscles are still and aching and my joints and ligaments hurt 24/7.  With my doctor's blessing, I will from today take 5 mg daily and hope that I can stay on that for the next 4 years.  I know that this increases my risk of a recurrency to some degree, but I have to live with that.  I will have yearly mammograms and six monthly check ups and I will try to live as full a life as I can and not worry about the future too much.  I feel better now that I have made this decision wlhich was not easy.
Best wishes.

Best of luck with the lower dose - I hope it makes life a lot easier and more enjoyable for you. It sounds like you're doing everything right in your decision-making, in terms of consulting your specialists and having ongoing monitoring. I really agree with you about quality of life - it's important. It needs to be factored in. I was googling the other day and I'm sure I saw something about research showing that lower doses of Tamoxifen are effective. Will see if I can find it again  :)

I am of the theory that Taking 'some' is still better than taking 'none' .....

I've been pondering that myself, even tho I am not on Tamoxifen (it is the only one I haven't tried!) . I only lasted 6 weeks on Letrozole, then 6 months on Exemestane & currently about 6 months on Arimidex so it looks like the honeymoon period is officially over!  It now seems to be the '6 month mark' for me that the nasties start happening.  :(  Currently, I have massively sore feet 24/7 (I didn't have that on previous meds) and my left hand is starting to seize up again . grrrrr

I still have a couple of packs of exemestane - I wonder if swapping back to that could make a difference .... 

I know overseas in some countries the norm is only 10mg. The tabs to buy though are more expensive so halving the 20mg ones is cheaper.

I am on one of the american FB pages for tamoxifen support just out of curiosity mainly.  It is really very common over there it seems. It's quite interesting to read all the different do's and don'ts from around the globe. Nothing like here, one rule for everybody, so many variations.  It appears a lot of people are encouraged to have the testing done before they bother with it to see if they are going to metabolise the stuff anywyay.

When I was on Tamoxifen I found that one brand caused me worse side effects than others.  It'll be different for everyone, but it could be worth asking if they have a different brand to see if that helps you.

Also, I was told to take mine before bed so that the side effects were worse while I was sleeping.

I'm finding it's disturbing my sleep too much to take it at night. I've been taking it before bed but might try taking it in the morning now. I don't get full-blown hot flushes - more like warm flushes. But they're warm enough to wake me up. Then I kick off the blankets because I'm too hot and then I wake up again because I'm cold. Aaarrgh. So sick of this and it's only been 6 weeks. Will try it in morning instead. At least a warm flush during the day won't ruin my sleep.