Tamoxifen and its side effects

I hadn't read that before so thanks for posting. I am due to start t next week. I am so afraid of this drug after all I have read. I am meet my onc next week to talk to her about it.

Hi Girls
I have been on Tamoxifen since December last and I have very little to report I too was dreading going on it as I had read so much about it's awful side effects but in my case I have had very few. I get a bit hot every now and again but I don't know if that it the tamoxifen or not
I suppose everyone is different but try not stress too much in advance of starting it, we have been through enough stress and as I say a lot of what you read probably won't even happen to you.
Wishing you all the best,

Shirls

I'm starting T in a few weeks also...

I've not enjoyed my low/no sex-drive throughout chemo (zoladex injextions!), so I'm wondering if I'm in for more of the same while on T? What have others experienced in this regard?

Also, comment from my partner who suggests perhaps some of the 40% come off T early to try for kids, as we hope to do in two years, as suggested by UK/nhs oncologist... any thoughts?

Thanks as always!

Hello Catherine!

I am taking Tamoxifen since early June. For the first week or two there is no doubt that I was extremely tired, but my body seemed to get used to it after that and since then the only side effect I have noticed is that I wake up at least twice a night in a 'hot sweat', I proceed to kick the duvet off, go back to sleep and am then wakened again shivering with the cold!!! It's funny though I have actually gotten used to this now aswell

I feel strongly though that as long as I can take T and remain half normal (whatever that is anymore ) then I will see the five years out if it means giving myself a better chance of beating this..

Bettersoon - On the plus side I have noticed no ill effects on sex drive from T !!!

Resolute

[color=#BF00BF:r661bn6d]Tamoxifen.....hhmmm! The first thing I think of when I see that word is how hard I find it to even swallow that tablet after all I had heard and read about it. I'm now a few months into it and I have had a few unwanted side effects, the big one being water retention which left my feel and legs very sore, the skin cracked and I was checked for a blood clot in my leg. I feel very achy and tired but as a doctor said remember what I've done in the last year and also the other medications I'm on too. I think its easy to blame some things on Tamoxifen but in reality I feel that as a result of surgery, chemo, radio and other meds its hard to know what is causing which symptom.

I'm determined to stay on Tamoxifen but I will and do ask for support around it if I find anything difficult. To any women due to start taking it I'd say take each day as it comes and don't worry about side effects that may never happen to you. Think of the positive reason you take it if you can. [/color:r661bn6d]

I have been on it for over a year now and have no side effects what so ever. I too was dreading the hot flushes etc. My periods haven't even stopped and I'm nearly 48.

Thank you all for sharing your thoughts. I agree with sunshine, in that it is difficult to allocate side effects to specific elements of the treatment. I think much of it is cumulative, and depends also on our general state of health. I am fortunate so far (20 days in and counting) to have had no fatigue or hot flushes, but it's early days. Also I am frankly thrilled with resolute's confirmation that T does not have to kill your sex life. Thank u R, you made my night!
Catherine

Yes, i'm glad of the good news on the sex-drive front too!
The jnr. doc who spoke to me briefly about T the other day was proud to tell me how "it's very well received by most patients"... I wanted to shake her and say "have you not seen any news reports lately!"... But I think the good thing is that here, on the likes of this forum, we get a sense that its's simply different for each individual, and a little moral support from oneanother, and information from those who have actually been through it, helps us to face these drugs and treatments as best we can

HI ladies three months into it now and absolutely nothing to report. Feeling quite tired last few days but that might be an accumulation of everything and five day trip to Portugal with my sister with hardly any sleep. So from me..... all normal..... odd hot flush (very rare)

Thank you deefed. I really think it is important for ourselves and for people who come here in anticipation of the treatments they have yet to start, to testify not only to the difficult experiences (and there are many, and they are real, and just as valid as anything else), but also to the fact that certain aspects of the treatment can be (relatively) benign, and not interfere too much with normality when the more aggressive stuff is out of the way and one has recovered a bit.
I am 3 days short of a month on Tamoxifen, and have the same experience as you - though no tiredness whatever. I assume that the occasional bout of "hot ears" and sometimes "hot face" I experience are hot flushes? I would not know, as that is all I have experienced so far.
Catherine

It is quite some time since I have looked at the message board but I am over 2 years on T and the only side effects for me are hot flushes.In fact I am in great form I took up jogging at 51 years of age and I am jogging a 10k Sunday week.I was scared stiff when I read all the negative things but thankgod it has been grand for me

Thank you so much Ceedee! This is exactly the kind of testimony I was referring to in my last post. Great to hear you are getting on well on T. I took my 30th tablet this morning, and so far, so nothing much to report, thank goodness
Well done you for taking up jogging, you won't regret it. I am a lifelong runner, and it makes you feel fabulously alive. Just be careful with warm up and cool down, good runners, and if at all possible, privilege parkland and grass to tarmac (kinder on all joints).
I hope all are well today, off now to get zapped in James' That (RT) too is going well so far, but then it's only my 8th session, so I don't feel too "fried" yet.

Catherine

Hi
I was unusual in that I started tamoxifen with no previous treatment so knew that none of my symptoms were as a result of chemo. I found few side effects except for hot flushes which settled after a few months. I think I was quite emotional at times but feel this was mostly due to the stess of my diagnosis . I found excercise great to help with the flushes and the stress. I'm in the middle of chemo now and finding the hot/cold sweats really tough going and much more severe than when I was on tamoxifen.
Best wishes