Hi there ...

I didn't know anything about tamoxifen when l started after my grade 3 breast cancer masectomy ... now I think I'm a pretty tough cooking ... nothing fazed my up till then .. over the first few weeks l started crying over everything ... ruined my son's birthday party .. ran off in floods of tears over nothing really .. cried for 2 days solid ... 

Then I asked on here and found lots of others had side effects ... emotional and physical... I'm not sure if it effected bones as I've got stenosis and scoliosis and arthritis... so can't say about that as I'm in pain with that all the time ... but I'm glad I carried on ... I took a mild anti depressant for a couple of weeks which evened out the mood swings .. I'm 18 months down the line now and fine ...

Just wish we were warned to expect it ... but weigh it all up ... I'd say give it another month .. if you still feel like that then ask about stopping .. everyone is different .. but good luck... hope it settles down for you ...  Chrissie  ; ))

Thanks Christie, it really is a B#*#*#*# drug.  I also have arthritis in most places.  I do go regularly to the he gym and find that helps.  Have just had a weeekend fromhell really and that’s what made me post today. I really suffer with fatigue and have had to take a day off work today as I felt so worn out.  

Spoke to the bc nurse ttoday and she suggested taking a tablet at night instead of in the morning to see if hot flashes lessen so at least I’ll get a good nights sleep.

I get so fed up of hearing myself say I feel tired or aches. I actually get on my own nerves.

ive been on it for a year now and would like to carry on, just got to find the way I suppose.  

Carry on carrying on :)))

Hi

Im on tamoxifen, i found I had different symptoms with different brands and have now stuck to the same brand. I too get aches and pains plus hot flushes and night sweats. I decided to take evening primrose oil (pharmacists advice) and it has lessoned the side effects. I’m moving off tamoxifen in a couple of months time and onto another drug but would have no hesitation in seeing my go about other drugs that would help with side effects, some have said a mild anti-depressant works but my pharmacists also mentioned another drug but I can’t remember the name of it. My advice is to try and mitigate the side effects and stay on tamoxifen as the stats show how good it is in combating recurrence. 

Hi there. I've made the decision just last week to come off tamoxifen after surgery, rad treatment and 2 yrs of taking tamoxifen. My risk is 32% - to me that is low enough to get some quality of life back. I have seen a tiny improvement but it's still early days. Back to see consultant in 5 weeks. He's meant to be country's leading expert and when I told him of my symptoms (very similar to all) he said tamoxifen isn't cause. Yeah right. 

There's a new tool out now designed by an American doctor which when all medical info is inputted it tells you the risk over 5 years then 10 years. They've also discovered breast cancer is as unique as a person's DNA- that's simply put. You have to read whole article

scienceblog.cancerresearchuk.org/.../

I am happy with my decision but you have to decide what's best for you and your body/situation.

Hope it goes ok and wish you well.

Hi ...

Just want to add, that energy level effects lots of us ... I have to have 2 days complete rest a week ...  it can last year's ... I'm sure the cancer zaps us and it's just finding a new normal ... I used to feel guilty but soon realised without it, I couldn't function. .

So don't be hard on your self ... listen to your body ... it knows when you need to stop ... so many find working again is draining ... when they thought things would go "back to normal"  so take it easy ... give yourself time ....  Chrissie x

Just to weigh in on this discussion, I have a split dose of tamoxifen. Two smaller dose tablets in a day rather than one larger one. It helped. 

Gosh, using predict, my Risk/benefit is 1% with tamoxifen and I would still take it. 32% is really high, why would you risk it?

To me 32% isn't high. If it was above 40% then I would not do it. I have vision issues, dizziness, fatigue and my periods have come back very painful pls and now digestive issues. My quality of life is not what i want - I can't work full time either as I'm getting severe fatigue so I don't want to be on tamoxifen for 10 years and then be put on an aromatose inhibitor. Many studies have been done about Er+PR+ HER2 negative cancer and tamoxifen so I am satisfied doing the trial 6 weeks of not taking it. It's a personal choice and like I said you have  to do what is right for you. That's why I made the choice as I know my body and I've done my research and spoken with my consultant (who is country's expert). To me, a benefit of 32% isn't worth taking it with all the aide effects.

Please let me know how you get on, any withdrawal effects, how long it takes for you to feel more like you.  I’d really appreciate it.  I’ve decided to start taking my tablet at night to minimise night sweats and so get a good nights sleep to help with fatigue which is my main issue.  Next mammogram due in July.  If that’s all clear and I’m still not feeling good I coming off it.  Your right quality of life is so important.

That might also be worth considering for me too.