hi can anyone help with some advice.
I’m 4 weeks into my Tamoxifen post radiotherapy 6 weeks ago. I was doing fine. I’m really active and have exercised my way throughout all the surgery, radiotherapy and starting the tamoxifen. This week suddenly, I’ve been floored with aches and pains, extreme fatigue and a generally feeling like I’ve got flu… I have no energy and can barely walk without pain let along run.
I wasn’t expecting this on Tamoxifen (I know AIs cause this) but does anyone have any advice how to improve this/ reduce the symptoms?
it’s really getting me down as I cant do anything and this is only week 4.
My mood is really bad too because I feel so rubbish.
I’m scared as I’m going back to work next week and never expected to be floored with this.
Hi sh11, I really feel for you as I am the same. I am 1.5 years taking tamoxifen and get aches and pains. I just take simple pain killers if needed . I find gentle exercise helps a lot. I do also get quite tired at times. Plenty rest when you can but at the same time fresh air. Going back to work when you feel this way can be daunting. Hopefully you have an understanding employer who will work with you. Maybe lighter duties and shorter / flexible days until you maybe feel more able. Hope you feel better soon and good luck at work. Take care x
at the moment literally feel like no energy at all so difficult to motivate myself which I hate (I walked 8-10km a day through all of this!) and now to nothing in a week. I thought it was going to be fine, I’m just hoping it’s going to get better because I cant feel like this. thank you again
Please don’t interpret my comment as dismissive, that genuinely isn’t my intention, but perhaps it is actually the flu? I only wonder as you said it has hit you suddenly and that is what your symptoms are feeling like. There are so many negative and scary stories about Tamoxifen out there it’s easy to think the medication is responsible for everything when it may be something entirely unrelated. Hopefully this will pass and you will be able to get back to your usual exercise as this is known to help any side effects people do have.
thanks and not at all dismissive! I’m totally hoping this is viral and it’s all going away soon except I dont have any other symptoms that would point towards flu and it’s been getting worse this whole week. but yes for the first time, I;'m going to hope this is flu or something and I will feel normal I dont want this to be the reality for next few years
thanks for taking the time to write x
Hi, I follow this thread because I chose not to take Tamoxifen, I have read that the brand can make a big difference, would it be worth asking to change brands? Please update the thread when you find out whether it is the Tamoxifen causing the problem. Good luck.
Hello, sorry hear that you are feeling like this. I finished radiotherapy 6 weeks ago and started Tamoxifen 6 weeks ago too so similar to you. I have also started to feel a bit achey and very tired this week.
Couple of thoughts…
A couple of ladies on my Moving Forward course had also said that they were hit with similar symptoms 6 weeks after radiotheraphy. Apparently not so uncommon and hopefully it will fade soon.
I was doing ok on Tamoxifen then the pharmacy switched my brand. New brand gave me much worse side effects. I asked to switch back and they have improved again. Asked my BC nurse and she said that there can be quite a difference in experience between brands. Might be worth trying another?
Hi sh11 I’m sorry to hear you’re struggling, it’s just rubbish, I had radiotherapy and thought I was fine but a couple of weeks later I was incredibly fatigued, I was so fed up and low it was bloody horrible, it would just come on quickly and I couldn’t function . The BC nurse said just rest or sleep when you need to and going for walks helped me build up to recovery , I’m 2 years in and for the last few months I feel better
The new normal Tamoxifen can cause aches an joint pain but it’s better than letrozole , good luck in your recovery you will get through this
Be kind to yourself rest when you need to it’s important XX
Thank you to all. I wondered about brands of Tamoxifen - if that would make any difference. but is there any specific ones for recommendation? I appreciate it’s a personal choice but not sure what to do ask for
How are you feeling now, @sh11? Has there been any improvement? I really hope so.
I was a little worried about changing brands as was fine with my first prescription for two months (Mylan) and didn’t want to rock the boat. I’m on brand #4 (Tilomed, Milpharm and now Wockhardt) and haven’t noticed any difference between them.
I know it’s not easy when you are feeling exhausted and uncomfortable, but I genuinely believe exercise is key. I run and go to the gym regularly and have no side effects which may be coincidence or good luck, but it keeps me motivated! There have been occasions when my legs have ached and I’ve not felt very strong. This could be related to Tamoxifen, but it equally could be age, looming menopause, a bug, overdoing it or general tiredness from work etc, so I put it down to one of those and think to myself I’ve just not had the best workout that day and try again the next.
I realise I may be blinkered regarding Tamoxifen and look for literally any reason other than it being a side effect for anything that crops up. Rightly or wrongly this means I can stay positive about the medication as I don’t want it to become some awful thing in my mind that I’m anxious about. x
thank you very much. like you I exercised all the way through my treatments as it kept me going and I didn’t want to give into the tiredness (it felt like the cancer won if I stopped…) but I think that’s why the last few weeks have been so difficult, despite even my stubbornness, I’m so tired and all the aches and pains means exercising is difficult, which defeats the object of trying to help the pains… so a bit of a catch 22 - I’m still doing my exercise but it’s just really really hard work and painful … so frustrated
I’ll def ask my pharmacist re brands - will give anything a go… I dont want this to be a side effect of tamoxifen.
Tamoxifen can cause aches an joint pain but it’s better than letrozole , good luck in your recovery you will get through this