Tamoxifen

I have been struggling with Tamoxifen for 6 months now and discussed with my oncologist who said I would benefit if I can continue to take for another 18 months at least. My problem is the side effects, migraine or headache nearly every day, painful hands, cognitive dysfunction and the typical menopausal symptoms sweats, cramps, sleeplessness. Is there anyone out there who has stopped taking tamoxifen, or considered doing but decided to carry on with it and why? Thank you. Pam

Hi Pam64

Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site.

While you are waiting for replies could I suggest you give our helpline team a call and have a chat with them about the problems you are suffering, they’re here to support you through this.  Calls are free 0808 800 6000

lines open weekdays 9-5 and Saturdays 10-2.

www2.breastcancercare.org.uk/publications/treatment-side-effects/tamoxifen-bcc20

Here’s also the link to further BCC literature regarding Tamoxifen.

breastcancercare.org.uk/news/vita-magazine/hormone-therapy-your-questions

I hope this helps, take care,

Jo, Moderator

Pam I was very reluctant to start tamoxifen but have now been taking it for 2 years. I did have a break so won’t reach 2 years of taking consistently until August. Almost immediately I started to ache down my right hand side. I persevered despite fatigue flushes and aches. After taking for 6 months my left upper thigh started to ache, my eye started twitching, I had a weird pain into head, struggled sleeping and had ‘shakes’. Some if these problems subsided: twitching eye/ stabbing in head and I think they may have been stress related.
My WBC has been consistently slightly low. I have no doubts that is related to tamoxifen.
After taking tamixifen for a year my neck started to ache and I got uncomfortable nerve like pain into head. The oncologist suggested a 6 week break. I gradually felt perkier and recommended tamixufen. After 10 days I got excruciating upper back pain. I stopped and started. At present I’m suffering from thigh neck and back pain and occasional fatigue. I intend giving up tamoxifen when I reach the 2 year mark. I don’t know if it’s tamixifen causing my problems. My worry is it’s disease spread though all scans clear. It had been a real struggle psychologically but I’ve given it my best shot. A few days ago a woman was bag packing at tescos to raise money for breast cancer research and we got talking about Tamoxifen. She said she’d had absolutely no problems with it.
The only way to find out which camp you fall into is to try it for as long as you can. You might be one if the lucky ones.

That should read recommenced not recommended!

Pam I’ve just re read your post and see you’ve been taking for 6 months. Sleeplessness was awful for me for a long time but, apart from the odd night, I seem to be sleeping better. Some symptoms do settle down after a while.

Hi Pam

 

I lasted 3 weeks on tamoxifen then decided there was no way I was going through that misery for the small benefit it might bring. I got my breast care nurse to tell me the actual statistics between taking it and not taking it and there was about a 9% difference. To some people that might be too much riisk but I believe quality of life is important and I’m willing to accept the risk. At the end of the day, it’s all just numbers and there are no guarantees.

 

It was my surgeon who said I’d need to take it for 10 years and tried to hide a smile as he said ‘if you can put up with it’. Oncologist also said ‘if you really hate it let me know’. I suspect there are few people who don’t suffer on it. I turned into a she devil and didn’t recognise myself. I’m not prepared to put myself or my family through that.

 

I also discussed it with my own gp who agreed with me quality over quantity every time.

 

I’ve been summoned to the oncologist and no doubt that won’t be an easy discussion but I’m happy with my decision and don’t intend to change my mind.

Hi Pam,

I think the previous posts are good, and give you some perspective. I’m on month nine of Tamoxifen, and unfortunately the brand I have found which for me has minimal side effects, seems erratically available at the chemists.
The last packet (month 8) gave me less hot flushes at first than my least favoured brand, but then as I came to the end of the packet, I started getting anxiety and cognitive problems… Which I knicknamed #tamoxifog !
I’m going back to GP to see if they will prescribe the original version made “Nolvadex-D” which apparently is better for side effects, but due to cost isn’t often prescribed…, or if not whether they’ll try me on the oral solution “Soltamox”.
I haven’t named the brands that are best / worst for me, as I have read a lot in trying to sort my situation, and learnt that each of us experiences the different brands differently, so what is favoured by someone may be someone else’s nemesis…
I also have been recommended to a “Chillow” (chilled pillow)- easily found by Internet searching, and it arrived today… Already it has made me feel much more comfortable / in control of my hot flushes, currently happening about every 90 mins, so an optimistic of improved sleep tonight.

Hope this helps
Kath

Thank you ladies for your candid accounts about your struggles with Tamoxifen.  The doctor I saw on behalf of my oncologist really didnt seem to care, and gave me a slip for an appointment in 12 months, I will not continue to feel like this so will start knocking on doors until I get some resolution.

 

It seems they should be more up front about how this drug can effect some so badly

 

I wish you well with your recoveries,

 

Pam x

 

Hi All,
Good to know we’re not alone. Great forum of information. I was to start tamoxifen in June but started it mid Jul and lasted 4 days. I have stopped. Besides profusely sweating I had stomache pain that scared me and constipation. The more research I do the more I don’t want to take it.
Sue

An old thread I am bumping up as found it really interesting. Anyone else out there struggling right now with their side effects?

I am 6 weeks in, and after querying when they might stop I was told ‘in a few months or not at all’.  My two main problems are muscle fascilations ( random twitching, round all muscles, anywhere, seemingly going in rotation round my body), and gut bloating with pain and basically IBS like symptoms which are miserable. I’ve lucky enough to not be getting flushes apart from a few hot nights, but certainly I feel lethargic, forgetful and emotionally low. There are some assorted smaller things like aches and pains but they aren’t anything I couldn’t put up with.  I just mentally ‘don’t feel like myself’ at all. I’ve read various threads on here, and many women seem to say that 3 months is when they noticed a change, some say up to a year. Can anyone relate to me right now as they are also suffering similar? Can anyone offer hope that IBS can resolve as the body adjusts ? 

 

Ive read lots of accounts of people who have stopped it, as their life quality was affected so significantly, but I so want to give this a good chance to do its job. 

 

TIA x

Hi Charys
I have been taking tamoxifen since April. I am finding the side effects of sweats quite debilitating. My head and hair and wet most of the time. After any slight excercise or exertion I am bright red. My joints ache, cramps and I get tired so quickly. I haven’t had ibs - although I had that before. I get itchy skin too. I have switched to Teva and found the anxiety less. X

Ladies ive taken Venlafaxine from the off with Tamoxifen and barely have any side effects, if I miss taking it the flushes come on pretty quick so I know its working for me! Xx

Hi Kary,
Have you just started with tamoxifen? They do take a while to get used to, I’m always tired, don’t have any problems sleeping, if you are having problems maybe you should have a word with your doctor especially if you are teery, some people can make them like this or feel depressed, I’ve heard of few woman having to get an anti depressant which works for some but maybe not everyone, your body takes a while to get used to the, remember though all the treatment you’ve had has had a part of the way we feel too. I really was cracking up at the beginning and thought of even if could reduce the tablet, I’ve heard of to some people takes a 10mg in the morning then 10mg at night, I just prefer to take mines in the morning so that you know that you’ve had it. Hope you start to feel better soon. x

Sorry to hear Kary that you have got an infection, I think they could possibly hold back on the radiotherapy until it clears up, poor you, I found when getting the radiotherapy was not as bad as the chemo, obviously side effects to this too, just be prepared for the tiredness, but you’ll get through it. I hope the tamoxifen does eventually die down with the affects your having just now, I can’t mind how long it took to ease a bit with me, I do have a bit joint pain in legs but normally once I’ve completed a days work, climbing the stairs is the worse. Every opportunity I get I do have to rest, but I did mind at the very beginning is this going to get any better. I know loads of woman are really suffering on these, I hated them to begin with, but I’m sure in time your body will get used to them, let us know how you get on when your back at the hospital, take care.x

Hi Kary,
I hope you get started with the radiotherapy when you go back Thursday, as for the flushes they are a nightmare, I was cracking up with them, don’t think I bothered with any make up at the beginning, but mines affected everywhere else it was awful, I
Mind having to change pjs twice in the night, and being on a bus everyone wrapped up, me T shirt on, I wish I could mind how long they lasted but was on megastol for couple of years, decided to come of them but at the time would get an odd flush, probably try with the ones you are on just now but if you get lots of side affects try changing the brand and stick with the same one, I had to change chemists because one wasn’t even trying to get me the ones I was on, took me into a room and tried to give me a lecture that they are all the same, but I had my answer ready they are not some got different ingredients and coatings, they did not like being told, but it’s you that’s on them, not them, I wasn’t very popular in that chemist afterwards lol!! Just change ones if you have to. x