yes that is so me I am so afraid cancer has spread to my bones I hate the way it makes me feel I am feeling 80!

Hi there, I'm so glad I read your post.  I had BC 4 years ago now.  Had a mastectomy (Sept 2016) and have been taking tamoxifen ever since.  I'm 55yrs old.  The side effects of this are horrendous.....I didn't really have many side effect to start with but I feel the longer I've been taking them, the worse I feel.  I've tried to eat Keto for a few years and cut out sugar as this triggers a crazy hot flush!!  I'm now vegan (March 2020) as I researched that a plant based diet is good for inflammation.  I should be the healthiest I've ever been in my life, but my joints are constantly aching.  Hands are swollen and feet too.  I work full time and walk my dog every day.  Trying to get in some exercise also to help with the aching joints, but I'm so sore even cutting my grass.  I am dreading having to keep taking this for the next 6 years....has anyone changed to  different meds?  Oh and fatigue.....constantly!!  Any help would be greatly appreciated x

I agree my cramps are awful and so painful, couple have things have eased them high dose of vitamin d and magnesium spray with or without glucosamine really help, nothing gets rid of it but both do ease it a little, magnesium spray good

at night 

was diagnosed with hormone receptive breast cancer in May 2015, Had dbl mastectomy , chemo and radiotherapyand a hysterectomy. I took a hormone inhibitor ( can't remember the name as my memory is so bad) for 5 years and started Tamoxifen in March this year - I am in agony, every joint in my body aches and the muscles in my legs hurt so much, I am exhausted all of the time, 

I am also at the point of telling my oncologist that I can't take it anymore but I am terrified to come off it.as Luckily I don't get hot flushes but I feel miserable - I don't know how I can stay on this for another four and a half years.

Tammy M

Hi,  came acrros these posts when googled joint pain and tamoxifen.  Reading so many posts with similar symptoms to my owm makes me more sure the tamoxifen is a factor.  I have aching calf, ankles and wrists/fingers on waking, and when getting up from sitting a while I have a lot of pain in my legs- feel like an old woman!  I walk a lot, swim, use an excercise bike but nothing seems to help.  Hot flushes have reduced over time, which is something at least.

It is a scary thought to stop taking tamoxifen, however one of the breast care nurses said that a break of 4 weeks would be enough to see if side effects improved, so I am going to try this and see how it goes.  At least then either I will know it is the drug or maybe just menopause.

This is not listed as a possible side effect of the drug, but seems like everyone here thinks it does.  The MHRA has a website for reporting side effects of drugs - the yellow card system.  GPs can report when a patient has side effects to a drug, but in reality few have time to do this, so to anyone who feels their side effects are due to tamoxifen please report on the MHRA's yellow card system, and if there are enough instances of this as a side effect it will be recognised

Hi Lorraine thanks for your very informative reply can I just say that out of all of the consultants & doctor's I have seen in the past 9 years not one has told me that. I've gone to the doctors time & time again complaining of these muscle Aches in my calfs & hops & arms yet what you say makes perfect sence

I stopped taking tamoxifen a year ago to see if it would help but it did not so I fear I would have to start taking it again

for my last year to finish off the 10 years the oncology prefer you to take it. Once again thank you for shining a light on the aches & pains that were unexplained for so long

Linda

Hi Lorraine 

I wrote my letter a few years ago now & had L’Oréal the leaflet but the side effects did start with me until I had been taking tamoxifen for a few years & even when I stopped the doctors still couldn't tell me if it was due to medication or not 

Linda 

Hi Everyone,

I am 54 years old and had breast cancer in 2012 - having a lumpectomy surgery on valentines day then went on to have chemo, should have been 6 sessons but my body was not tolerating the chemo so I on had 3 sessions.

Went on to have radiotherapy which went well and since March 2012 was prescribed Tamoxifen since then - no consultants, doctors or nurses advised me on what to expect and from the minute I had taken my first tablet - it has changed my life

I do wish the health experts would advise us on what this drug does and the immediate and longterm side effects that it has on people, so they know what to expect. 

No one advised me that this drug was from the start putting me throught the menopause and doing it COLD TURKEY with no additional support or medication.  I do understand that this cancer was caused by hormones and the HRT was not an option.

I am now always warm (before I needed hot water bottles in bed) now I need a fan in every room and the bedroom fan runs from the minute I go to bed to the minute I get up - no matter what the weather is like outside.  I do still get hot/cold sweats day and night, put on weight, this drug has also affected my eyesite and now I wear glasses.  I don' t know about anyone elses situation but I also find that even now I seem to get every cold, flu or any type of infections very easily.

I know this drug is the better of the 2 evils but I struggle (and have been struggling for 4 years now) with joint/bone pain - some days are okay as some are not (like yesterday & today - awful ) - I and many others like me feel a lot older than I actually am, and in the back of my mind worry that something else is wrong.

Having consulted with the doctor several times, I am on anti-depressents (as I do suffer from depression), Co-codamol - low dose and also gabapentin that is supposed to block nerve pain - ocassionally these drugs help but sometimes they dont scratch the surface of the pain most of the time.  Pain in which my ankles, knees, hips, shoulders, wrists fingers and neck ache like I have flu or full body arthristis.

My consultant suggested to me that because I had the highest level of estrogen levels in my body that I remain on Tamoxifen for life and now they have ended my consultants visits - expressing that evidence has shown there is no requirement for follow-up appointments or mamagrams after 5-7 years - this, I think is cost cutting no evidence.

I loath going back to the doctors - they have enough problems in the present climate and I am worried in case they take me off the medication.

I am also in the process of looking for a new job in a office - which scares me in case I have too much pain to do my job.

My apologies if this sounds like a rant but feel today I needed to express myself and have found this forum that lets me know I am not alone (which is a great help).

I would love to hear from people who have experienced the same situation and any tips that may help with the pain will be greatly appreciated.

My very best to you all.

Audrey x

Thank you for your compassionate response.

I do hope that other survivors are not put off replying due to this unhelpful reply.

I am looking for other compassionate survivors to discuss these very common issues and hope we can help each other with helpful tips, understanding and keeping each other supported. :)

Keep Safe and my very best to all other survivors out there.

Audrey x

Hi Everyone,

I am 53 years old and had breast cancer in 2012 - having a lumpectomy surgery on valentines day then went on to have chemo, should have been 6 sessions but my body was not tolerating the chemo so I on had 3 sessions.

Went on to have radiotherapy which went well and since March 2012 was prescribed Tamoxifen since then - no consultants, doctors or nurses advised me on what to expect and from the minute I had taken my first tablet - it has changed my life

I do wish the health experts would advise us on what this drug does and the immediate and longterm side effects that it has on people, so they know what to expect. 

No one advised me that this drug was from the start putting me throught the menopause and doing it COLD TURKEY with no additional support or medication.  I do understand that this cancer was caused by hormones and the HRT was not an option.

I am now always warm (before I needed hot water bottles in bed) now I need a fan in every room and the bedroom fan runs from the minute I go to bed to the minute I get up - no matter what the weather is like outside.  I do still get hot/cold sweats day and night, put on weight, this drug has also affected my eyesite and now I wear glasses.  I don' t know about anyone elses situation but I also find that even now I seem to get every cold, flu or any type of infections very easily.

I know this drug is the better of the 2 evils but I struggle (and have been struggling for 4 years now) with joint/bone pain - some days are okay as some are not (like yesterday & today - awful ) - I and many others like me feel a lot older than I actually am, and in the back of my mind worry that something else is wrong.

Having consulted with the doctor several times, I am on anti-depressents (as I do suffer from depression), Co-codamol - low dose and also gabapentin that is supposed to block nerve pain - ocassionally these drugs help but sometimes they dont scratch the surface of the pain most of the time.  Pain in which my ankles, knees, hips, shoulders, wrists fingers and neck ache like I have flu or full body arthristis.

My consultant suggested to me that because I had the highest level of estrogen levels in my body that I remain on Tamoxifen for life and now they have ended my consultants visits - expressing that evidence has shown there is no requirement for follow-up appointments or mamagrams after 5-7 years - this, I think is cost cutting no evidence.

I loath going back to the doctors - they have enough problems in the present climate and I am worried in case they take me off the medication.

I am also in the process of looking for a new job in a office - which scares me in case I have too much pain to do my job.

My apologies if this sounds like a rant but feel today I needed to express myself and have found this forum that lets me know I am not alone (which is a great help).

I would love to hear from people who have experienced the same situation and any tips that may help with the pain will be greatly appreciated.

My very best to you all.

Audrey x