Tamoxifen

[Rall]

Thanks for your advice Claire and Ann-m, I'll give mornings a go! I hope that your tiredness (including you Bek) if just your body saying "hey, this was a really tough hill to climb, and I know we're at the top, but let's have a little rest now and then". I'm definitely listening to it!

[Claire76]

Hi Bek123. Thank you for the hug x I am the manager of a preschool so work can be quite full on times. Although I do love it. Totally agree that sometimes it feels like a switch is flicked and I am so tired and then my feet really ache. Last year I really struggled and got quite upset and times, but I am feeling a lot more positive at the moment. Thank you x x

[Claire76]

Hi Rall. First of all I hope the remainder of your treatment goes well. I take mine with breakfast too like Ann, which seems to work. I think the best thing is to listen to your body and if you feel tired rest. We have all been through a tough battle and some days it still feels like I am. But I am happy I won my battle and glad I am still here with my family and cats. Take care x x

[Bek123]

Hello Claire, what else is going on in your life? Are you eating ok? Are you stressed in any way or feeling low?I’ve been taking Tamoxifen for the same amount of time. I also get tired but then I’m 46 and it could be an age thing! I don’t know about you but occasionally I get that absolutely and totally knackered feeling that only comes after chemo.. like someone flips a switch and your body shuts down. It’s rare but it happens. How long have you felt like this? Sending you a massive hug xxxx

[ann-m]

Hi Rall,
I decided to start with what’s best for me, which is with my breakfast toast in the morning, as I felt I would be less likely to forget it at that time & if I had issues, then try the evening. As it turns out, I’ve been ok on it, so I have continued with the morning.
ann x

[Rall]

Advice on tamoxifen and the best time of day needed!

Hi Ladies, I too am just over cycle three, and getting ready for my last chemo cycle before radio and then on to Tamoxifen (with a year of Herceptin to go..).

My oncologist has given me the first tamoxifen prescription ready go to after radiotherapy, and I've been told that like the pill (which probably got me into this mess in the first place!) I should try to take it the same time of day.

Can anyone advice whether it's best to take in the morning or evening? 

P.S. Claire, I hope you've managed to get it to settle down with a new brand! I'll definitely been keeping all this in mind when I start, so your post and responses have been super-helpful.

[ladybowler]

Melba

Very wise words from ann.  Not everyone gets any or all of teh side effects and it is true those of us who have had little or no side effects do tend not to post..  I have a hot flush about an hour after I take my tablet, and apart from that I have occasional aches but honestly nothing that is not manageable.  I recall when I first started taking it, it took a good few weeks for my body to adjust to it, as would be the case with any long term medication you take, but again they settled down after about 8 weeks.

I have been taking it now for 2 years and will be on it in total for 10 years.  I remember sitting looking at the packet for a week before I plucked up the courage to take it because I too was scared about all the side effects, which they have to state so that they do not get any claims from people if they dont!!

Sending you all good wishes

Helena xxx

[ann-m]

Hi Melba,
Just to point out, that problems are not necessarily inevitable with tamox, many of us are ok on it or at least find any side effects manageable, however, those who are ok, wont tend to be reporting it here.
I too remember feeling anxious before starting tamox & reading experiences here did not help, but as it turns out, I’ve been fine in it.
Maybe just cross that bridge when you come to it & see how you go. It could even be ok for you & if there are issues, then deal with it then.
Wishing you well with it all.
ann x

[Melba72]

Hi all,

I'm new to this thread, but was research about Tamoxifen because I've been told I have to take it for 10 years😥. I've only just had cycle 3 of my chemo, so no where near the stage of taking Tamoxifen, but i'm a forward thinker and like to be prepared. I'm now quite scared about taking this pill for 10 years! I'm 46 years old and still very active and the side effects sound like they will completely change me😒. Has anyone spoke to their Onco about ways to counteract these side effects? I'm always a positive happy person and the thought of this tablet changing me into a moody depressed person scares me.

[Nonita61]

I’ve been on tamoxifen for 4 years now and didn’t have any problems until nearing my 4th year. I started with aching feet then followed by horrible leg/toes cramping (intense pain), tiredness,blurry vision sometime, gained weigh and feel depress. When is this suffering going to stop.

[JuHu]

Hi Claire76
I am having exactly the same symptoms from taking Tamixifen together some very bad hot flushes down below - hey living the dream lol
I am having Acupuncture to help with the fatigue and other side effects and it is helping the fatigue is reducing and I have a lot more energy - I have decided to have 10 sessions will try anything - good luck xx

[Treeze]

I use ibuprofen gel from my gp to relieve pain and also amitriptyline which is safe for kidneys..must be as I only have one due to kidney cancer too.Not perfect but does help with the pain.

[jilly34]

Hi I've just started taking Tamoxifen after already trying Letrezole and Aromasine, but the worst side effect is more or less the same - that is painful knees and ankles. It's so bad that I'm thinking of giving up teaching line-dancing, but everyone seems to think it's best to keep moving. So does anyone know of an effective pain-killer I can take long term without damaging my kidneys/liver. I can't dance for 3-4 hours without some strong pain relief.

[Yorkie]

When i was first given Tamoxifen the nurse said to try it for 2 weeks and if the side effects where bad then to come back to them and try another brand so there is definately something in it.  They also swapped it back to my old brand without question at the chemist straight away.  Different brands suit different people. The active ingrediant is the same, as is the dose amount.  Its the other bits that differ.  I did some research on it and read American sites too.  Do hope you get sorted. x

[Claire76]

Hello Yorkie. I didn't know the different brands had different ingredients. I will definitely look into that. Thank you for you help. X

[Claire76]

Hi Emily. Thanks for the advice I will give the number ring Claire x

[Claire76]

Hi Ann, thank you for replying. Good advice I do try to remember that it is all helping. Claire x

[Yorkie]

Hi. Really sorry you are having a bad time.  I am not sure if this will help you but I am going to tell you about my experience .  I have had chemo, surgery, radiotherapy and Herceptin.  All of which have left me pretty tired, particularly the Herceptin.  4 months out of Herceptin I started to improve and not feel so fatigued. My muscles also stopped aching so much.  After 11 months of Tamoxifen which does have side effects which I find are at least tolerable, the chemist gave me a different brand to my usual one and a few days later I felt terrible.  The muscle cramps where so severe and I could hardly string a sentence together, I was absolutely exhausted, could not concentrate at all and felt really low.  I could have fallen asleep standing up.  I contacted the chemist who straight away swapped my Tamoxifen brand back to the usual one.  It took 10 days to get back to how I felt before.  So you never know, changing brands could be worth trying.  Nobody is the same and different brands will suit different people.  For me, the Teva brand, my usual one is much better.  I had the Mylan make and it was terrible.  Although the active ingredient is the same, the rest of the ingredients are different.  Maybe worth trying anyway.  Good luck. X

[EmilyA_BCC]

Hi Claire

It's Emily here from Breast Cancer Care.

I'm really sorry to hear about the side effects you're having from Tamoxifen. It sounds like you're having a very difficult time. 

While you're waiting for responses on here, I just wanted to let you know that a few of our telephone volunteers have described having particularly bad symptoms too, having been on Tamoxifen for a few years.

If you'd like me to put you in touch with someone, feel free to drop me a direct message through the forum with your name and number, or you can call us on 0345 077 1893.

Best wishes

Emily at Breast Cancer Care

[ann-m]

Hi Claire,
Not a lot of help really, but just wanted to acknowledge your post.
It sounds like you’re doing everything you can & maybe it’s just focusing on the job it’s doing in reducing risk - which, obviously you are.
Wishing you well with it all.
ann x