Hi.  I am so glad I have found this thread! I've been searching the net for help with post tamoxifen side effects and have found nothing! I stopped tamoxifen this Jan after being on it for 10 years. I was fine for a little while and then one day out of the blue it was like I had reverted to life before cancer with the most horrendous mood swings! I became so low, I hated myself, I wanted to die etc... everything I used to feel every month my period was due.  It was awful! Then i had the worst period I've ever had! Bear in mind that my periods stopped for 11 months (I am 47 and menopausal) This period lasted a whole month!! I felt drained.  Now I am suffering with the worst breast pain I have ever had.  Its in both and not just the affected one, which gives me nerve pain every day anyway! It's really starting to get me down.  Taking my bra off used to be the best feeling, but now it almost makes me cry.  
 

Is anyone else having this awful breast pain? And what are you doing to help alleviate it?

thank you xx

Hi Vik,

I am due to stop Tamoxifen in October this year & am hoping that I don't suffer with any adverse side effects. 
Im sorry to hear you are now suffering. Have you spoke to your GP? Not sure where you are but I know it is almost impossible to speak to a GP at the moment in Essex.
I have been looking for advice regarding coming off Tamoxifen after 10 years but there seems to be very little. It is a real shame that there isn't some form of help, be it online, to offer advice & reassurance to those of us that need it. I feel like my Oncologist has said "well that's it, your 10years are up so off you go" Forgotten

I hope someone can help with advice x

So glad I found this thread. My relief at being told I could stop Tamoxifen this week, after 10 years, has slightly evaporated after reading this! So sorry to hear that so many if you have experienced withdrawal symptoms when you should be celebrating life! I had no problems at all while I was taking it, apart from weight gain, so am nervous now, especially as I am in the middle of moving house. I was just hoping the flab would miraculously drop off ! Fingers crossed eh? Wishing you all well x

Hello all,

Glad I've found this post. I went on Tamoxifen in 2013 and coming off it June. I haven't seen my consultant or oncologist for a long time, I've just been going by my prescription sheet. 
 

I'm 40 in August. I was stage 3, grade 3 HER2+ and pregnant. My son is now 9 and seems fine. 
 

I have a coil so no idea about my periods. I have had blood tests and I haven't had early menopause. 
 

Just have to wait and see. I'm on anti-depressants so I'm hoping they don't get messed about too much. 

Hi there, I was grade 2 but node positive and large tumour (5/6 cms) strongly ER positive and still here 10yrs later! Just about to come off Tamoxifen after 10yrs. You must be feeling really anxious atm but remember that treatments have improved massively over the last 10yrs too. Good luck Xx

I stopped taking Tamoxifen in April this year after 10 years.  During this time I gained nearly 3 stone, was diagnosed with fibromyalgia and atriol fibralation (not tamoxifen related) and experienced some tiredness and extreme hot flushes.  I got a phone call from oncology just saying you can stop taking it... and no further advice was given! I think this could be done in a better way so that we are more prepared and don't feel so abandonned!

Since soming off tamoxifen, I'm dealing with depression, hot flushes, joint pain, muscle waistage, osteo arthritis, extreme tiredness and horrendous brain fog.  I've been put back on clonidine for hot flushes, physio to try and build my muscles up, anti-depressants dosage has been increased, pain killers and phorpain inflamation gel have been increased and all my doctors are telling me to do is increase my pain killers further!  I work and drive so this is not the best advice as increasing my painkillers further can make me drowsy and I already max up on paracetamol!!

I was so looking forward to coming off tamoxifen, but now I feel that the symptoms I experienced while I was on it, weren't so bad after all.

Good morning KylaG, 

I am just reading your post from 26th August, 2020 and I am wondering how you are now? I am hoping that I find you well. I am going through what you experienced coming off tamoxifen just now. The joint pain and muscle pain are the worst and the coment about feeling like an old lady is ringing true with me. Can I ask you how you are now? Did you get any relief? 

Bedt wishes 

Shortie x

Hi Shortie, 

Can I ask how you are now?

My mum has only been on Tamoxifen for just over 2 months but I noticed quite a few side effects so she has been off it for a few days. She is so confused, cramp in hands, cloudy vision, total exhaustion, no motivation and a complete personality change. She has been used to doing exercise 4 times a week to now having difficulty walking to the kitchen.

How long does it take to get out of your system? The confusion and exhaustion is so extreme.

Hi Bushcat

So glad i found your post and to know someone else feels similar. I got diagnosed with breast cancer in July 2012 when i was 44 and after chemo was put on Tamoxifen for 10 yrs. The drug gave me terrible hot flushes but apart from that no side effects. Over time though i would have to get polyps removed from my womb lining and then in June 2022 i had to get a total abdominal hysterectomy and ovaries removed too for fear of further cancer. That all went well. 

Then at end of December i came off Tamoxifen after 10yrs, was a bit frightened to do so but also glad as my oncologist said i would have more energy, my hair would be fuller and I'd feel generally healthier. It took a while to get out of my system and now i just feel so awful, a bit like yourself. The hot flushes are so dibilitating and I'm hardly sleeping so have terrible fatigue. I wake up everyday with a headache or a pressure head which stays with me all day. At night my mind races all the time and during the day i have major brain fog. My joints are all sore and sometimes i just feel my whole body is broken especially my knees and back. I am so very down some days and just want to curl up somewhere on my own but i have job and people to interact with. Alot of the time i don't even want to meet up with people i like. I used to love a laugh and meeting people and now i can't be bothered. 

I agree with you totally that nobody tells you the bad news about coming off Tamoxifen and there really isn't anything out there. I don't know if I'm going through menopause at 55 or if it's just coming off the drug. There seems to be nothing for ladies like us to take to help us. There should definitely be more awareness of this. 

How are you feeling lately? I do hope you are a little improved. Nothing else for it but to keep going, difficult as it is. 

Kind thoughts, Jenn

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