I have had really bad side effects on Tamoxifen and am going to suggest to my onc at my appt. next week that I try a lower dose of 10 mg instead of the usual 20mg.
Has anyone else done this as a last resort?
Any experience of this would be appreciated.
I think the finding are its not effective at 10mg however I knw some people take 10mg twice a day.
You could also ask your pharmacist to get different brands as they can all have different side effects… And depending on what SEs you’re getting there mayb some other medication that could relieve them.
Hello
Can you tell me what bad se’s do you get on tamoxifen I’m supposed to be going on them after chemo and rads.
Thanks
Fran xxx
I used to take 20mg Tamoxifen once a day then asked my onc what i could do about SE’s ,so she told me to take 10mg twice aday, so I asked my GP to change my dose, I take it about 7am and then at 7pm ish and I still get hot flushes but I don’t think the’re as bad as before, I’ve only started this about a month ago, hope this helps x
As the others have said you could take 10mg twice a day. You don’t mention what your problems are. Perhaps you might Ring the Helpline tel 0808 800 6000 and see if they have any suggestions. It is so hard when something shows it is doing what it should yet that very thing is instrumental in making you want to stop taking it. I so hope you can get some answers.
Cackles
Hello,
I met a lady who had really bad SEs on Tamoxifen to the point of being suicidal. She tried 10mgs twice a day and then ended up on 10mgs once a day.
Fran - don’t panic! Most people have very small SEs if any. It’s like any drug - affects people in different ways.
Hope you get the dosage sorted out, SamLee.
X
I have tried 10mg twice a day which didn’t make any difference whatsoever, which is why I am thinking the only alternative is to try 10mg once a day or not at all.
Fran, I didn’t list all my side effects because it tends to scare people and a lot of people cope well. Basically, constant nausea (despite taking the same anti-sickness that I was on when having chemo), horrendous joint pain, hot flushes so bad that I am already on medication for them and suicidal depression, so bad that it seemed a good idea to throw myself out of my office window 27 floors up. And finally hallucincations which made me nearly fall into the road one lunchtime a few weeks ago.
That was the day I packed them in and a few days later felt back to normal. So I am willing to try the 10mg but after that, not a chance.
Sam
Oh my god that is scary!
I would get an appt immediatley and see if you can change them!
That’s awful for you to be going through this!
I hioe you get sorted soon
Love fran xx
Fran,
Live I say at the moment I am not taking them so feel fine. I just know my onc is going to have go (she is like that), so I want to appear reasonable by suggesting the 10mg as an alternative.
If she poo poo’s the idea then I just wont’ take them anymore.
Sam
I’ve recently changed from Aromasin to tamoxifen (had arimidex after promary dx but changed to aromasin last sep on sec dx).
SEs from aromasin - worse than cancer!! Worse than T of FECT!! Can’t comment on childbirth, but dehumanised me completely! Thought it was down to secondaries so didn’t complain - silly me! Thinking about it, its the pain since Sep which started me on morphine!
Tamoxifen is a breath of feresh air - but I knew thaty anyway - I did the IBIS trial from 2000 - 05, and the nurse and I both thought I was on placebo - sailed thru no problems.
Just goes to show how different drugs work on differnt people!
Sam with those side effects I would say its more detrimental to stay on them… Your oncologist wouldn’t be doing her job correctly if she made you continue… I don’t know what age you are but if you are approaching the menopause you could maybe ask about ovary removal and having an AI instead… It doesn’t help the flushes costs an instant menopause and they often cause joint pains but perhaps not the depresin and suicidal feelings.
And although broomstick lady had bad effects on AIs not everybody does.
Maybe one of the first things you need to check out is actually how hormone positive your cancer is and what difference to your prognosis it makes… I don’t get bad side effects from the tamox… But my first cancer was strongly hormone positive 7/8 but the benefit is minimal only 1-2%… However as a brca2 gene carrier it may have more benefits as a preventative treatment for a new primary.
From what you have said I would be most surprised if your onc wanted you to stay on it… You have to weigh up the quality of of your life with the quantity!
Love Lulu x