I have just started on 20mg of tamoxifen but I get zero sleep on it. I have had breast cancer previously and took 10mg tamoxifen and coped quite well, this time however my oncologist wants me on 20mg. It seems like a double edged sword, if I am not sleeping I can take more drugs to help me sleep. I do not want to go down that path. It was eight years between my two cancers so I figure the 10 mg must of done something but my doctor is now saying either tolerate the 20mg or take nothing. Any other ladies been down this path? My decision at the end of the day I suppose if I take anything or not, but have to live with that decision also. It is 2.18am, this is day five of no sleep

Can relate to that, first time round was bad enough, confronting it again for a second time and going through the process all over again with the same mental torment, the mood swings, the changes in relationships etc it seems to go on and on

F*@#$ F*&^%ng Tamoxifen!!!!!!!!!!!!!!!!!! That pretty much sums up my thoughts about it.. 8 weeks back on it for the fourth time and here we go again with the head malfunction. Fantastic, just what I need three days before my scans. Would have been nice to have my brain intact to get through that day. Sorry for rant and shouty swear words.

Understand where you are coming from completely, rang my specialist this morning and asked if I could go down to 10 mg and try that instead of stopping treatment, he has agreed to that and we have come to an agreement that if this still does not agree with me then I stop altogether. I have tried Arimidex, Aromasin, Femara and tamoxifen, at the end of the day I have to weigh up the quality of my life and affect it has on my family opposed to taking these drugs which are lethal to me. Good luck and love to anyone on these

Kesmusc, good luck with your scans next week, scary when they come around, always set you on edge until you get all clear

I mentioned cannabis oil on the post for Letrozole. The FB group was also talking about it helping with sleep problems due to medication

Dosage os Tamoxifen | BCNA Online Network

25 Replies

Pink
Member
7 years ago
Hi Twiggyjumps, I’m hearing you, sleep was also impossible for me, that is why I am going down to 10mg to see how they affect me. I have stopped taking the 20mg, we have to also listen to,our inner self and for me dealing with that dose took too bigger toll on my body and mood and life in general. I will try the 10 and then I will know I have tried everything. I managed the five years the first time I got cancer but this time things have changed and I am not tolerating it. If these don’t work I will make peace with myself and stop. These drugs send my stress levels sky high also which can’t be good. We all deserve peace at this stage
Twiggyjumps
Member
7 years ago
I’m on 20mg tamoxifen since December. About 20 min after I take it, my thermostat works overtime! Hot flush no. 1 then about 1 hour later another and so on. Then they slow down when I’m distracted and also in the evening. If there’s a heater on, it triggers it off again. But then I’ve also been feeling the cold. When stress is low, I don’t nearly get as many. When I stress, they start.
kmakm
Member
7 years ago
@kezmusc Breakfast of Champions
kezmusc
Member
7 years ago
Thank you ladies. I feel somewhat better today thankfully. Amazing what a couple of double shot espressos and berocca slammers will do for your head for breakfast. LOL.
kmakm
Member
7 years ago
Thinking of you @kezmusc. K xox
Kiwi_Angel
Member
7 years ago
@kezmusc good luck lovely xoxo
Sister
Member
7 years ago
@kezmusc I meant to say good luck for your scans but forgot to type it!
Pink
Member
7 years ago
Actually I think I have some Endep here somewhere in my stash of other things I have tried but don’t recall if I used it or not, it may well be helpful, thank you for that info
Pink
Member
7 years ago
Hi TonyaM, I took Arimidex and Tamoxifen for five years after my first breast cancer and after eighteen months after stopping it I got a new primary in my other breast so I see no rhyme or reason to this insidious disease. I will keep endep in mind. At the moment I think I need to take control back and live the best life I can. I don’t think I am prepared to suffer through another five years of miserableness
TonyaM
Member
7 years ago
Hi Pink, like you,I’ve had the mongrel twice. After the first time,I tried Tamoxifen for about 4mths and couldn’t stand it so ditched it and hoped for the best. I had 7 good years and then it came back in the same spot.So I resigned myself to take Tamoxifen and see it through. The only way I managed it was to take a low dose antidepressant called Endep 10mg.It helped with sleep,mood and hot flushes and didn’t have any side effects at such a low dose.I managed to take T for 4 yrs. It’s been 8 yrs now since the last bc so hopefully Tamoxifen helped but who knows.