Hello Ladies,
Looking for some positive experiences of women on Tamoxifen. I read so many negatives that I am quite worried about the prospect of having to be on it (and subsequent hormonal treatment) when my chemo ends and for possibly the next 5-10 years. Chemo is torture enough!!!
BBFN,
Ali xx
Hi Ali,
Don’t jump ahead, and don’t be scared. I have been taking it for 2.5 months now and yes, I have had some fuzziness, a few headaches, some hot flushes. But overall it has not been so bad and it has not taken over my life… as I have not allowed it to. There is a lot of help out there for overcoming side effects and some people experience very few. For me the benefits really outweigh the SEs - taking Tamoxifen is my best insurance policy against my HR+ cancer coming back. I need to do that for myself and especially my family. It has to be worth it. But I honestly wouldn’t take it unless my oncologist and breast surgeon hadn’t fully explained to me what the benefits were. Talk to your medical team if you are unsure.
Although we might complain about it on these boards, taking Tamoxifen really isn’t so bad. Staring at the unopened packet and taking the first tablet are the hardest parts.
For many people, chemo is the biggest fear. You are already managing that one by the sounds of it. We are all amazing women on here, and stronger than we think. One step at a time xx
Hi Ali, I’ve been on tamoxifen for 3 months and not had any major problems. I have found different brands dont suit everyone. The first time I had Wockhart brand and no problems, second month I had Genesis and had lots of aches and pains but back on Wockhart now and no problems apart from the hot flushes. If you find a brand that suits you stick to it. Good luck.
Karen X
Hi Ali , I’ve been on Tamoxifen for a year and honestly it isn’t anything to fear, yes there are various side effects and you will read about a lot of them here but you aren’t likely to get them all if any! I haven’t had anything that’s made me think I can’t take these anymore, tiredness,the odd flush, a few extra aches and pains but really nothing to worry about Xx Jo
I have started only 3 weeks ago. I have stored it in my knicker draw to help in remembering to take it. I feel more tired and but it does take longer to get to sleep. I know I am less physically tired than usual as I am working less and not exercising as much. I feel more alert when trying to fall asleep.
I am grateful research has shown then strong efficacy and availability of Tamoxifen. It has still taken some accepting I need to take a medication long term.
To be honest Ali I dont find them a problem and like the security of knowing im able to take something on going to keep me as safe as possible from this ever happening again! My surgeon said dont read the side effects!! XX
Hi Ali I’m very scared about it too X so you’re not alone. I want to start a family too ?xx
Hi Ali, I’ve been taking it for 3 months now and in that time have got back to running about 3 times a week - planning a 10k in a couple of weeks - and have managed to lose about 10 pounds (most of which I put on during chemo!).
My hair seems to be growing back ok too - that was my biggest fear re Tamoxifen, that my hair would be thin or not how, but so far so good!
You’ll get your old life back, never fear, and some things will actually be better because you appreciate them more.
Best of luck x
Hi Ele,
Great to hear from you and nice to be catching up with you … although not with the running yet I can assure you. I was signed-off yesterday after having node clearance last month. I didn’t need rads in the end so here I am just about to start on the Tamoxofen. So good to hear your positive take on it all and that you seem to be doing so well. Hope life continues to go in the same direction for you.
Ruth xxxx
Hi Ruth
So good to hear from you too! I have been keeping an eye on a few threads but commenting less. Glad you are at the end of active treatment and hope you are feeling well.
Are you working? How’s your hair coming along? I’m planning a little hat burning ceremony tomorrow to celebrate the return of mine!
Yes, Tamoxofen has not been anything like as bad as I feared/had heard, which is not to diminish the experience of others who have had a bad time of course!
I’m planning on doing the BM10k in a couple of weeks - Barry from the Oct thread signed up didn’t he so I will look out for him.
Let me know how you get on on the Tam - fingers crossed for you xxx
Hello Ladies,
How has your hair fared during this time? It might be early days for some of you but are you still seeing hair loss??
Ali xx
Agree with all that Jo!
Ali, I had my last chemo on 2 Dec and started Tam on 2 Jan, so my hair has been growing back while on Tam (I didn’t cold cap so was completely bald). My hair now is still obviously v short but is definitely full thickness.
I have been trying to eat super healthy too, with plenty of lean meat, fish, eggs etc as I know iron is important for thick hair. Who knows if that’s helped but it’s made me feel I’m doing everything I can.
Try not to worry about the next stage, just focus on getting through your chemo (easy to say I know). In my experience chemo was the hardest bit so you’re nearly over the worst. I found rads fine by comparison, and Tam equally ok.
And if all else fails, don’t forget Kylie did 5 years of Tam and she looks great, no?!
Best of luck x
Ele, my hair has come on a lot in the last few weeks. I’ve a good covering now although it’s mostly white. To be fair, I’d not seen my real colour for a number of years so I’d no idea what was going on underneath. I’m looking forward to going for something totally new in the hair department once it’s long enough to actually cut! Like you I’ve been eating really well - mmm, well except for the massive amount of halloumi I’ve just had for dinner this evening but that’s good for the soul so we’ll let that one pass. And I did have lots of veggies with it.
Only picked up my prescription for Tamoxifen this week and am starting tonight. I’m already having chemo hot flushes which are tiresome but I’m able to cope with them - I am 52 so would have no doubt been coming up to the menopause shortly anyway and am trying to be philosophical about it.
It’s good to see the positive comments from people here about how their experiences so far. I’m hoping this will be the same for me too. I will report back.
Ruth xx
P.S. Ele, not working yet. Starting phased return in about two weeks. How about you?
Hi Ali-B Hope you’re hair is going ok with the cold capping. I can give you positive feeback. Been on it for nearly 3 months now & no side effects whatsoever. I think it’s key to exercise a lot & eat healthily. I was dreading it & read a lot of threads where many ladies were saying they solved their problems by doing those 2 things. The problem is that people who are fine on it don’t tend to post (it’s like tempting fate & also not nice for those who are suffering). I know four people in real life on it & none are having any major issues either.
Hi EleJ - you were the one that posted for me when I was worrying about it before I started. Hi Ruth glad to hear your hair is sprouting. Had my first haircut today & now have something akin to a normal hairdo, if a tad short & thin. Could even dump the scarves at a pinch, but being a vain moo, I am waiting to cover this ghastly grey before my ‘big reveal’ to the world. All the best ladies xxx
Bibi, so glad to hear that you are getting on well with it. I’m sure it’s far too early to say for me as I’m only on day six but so far so good. In fact I’d say I’ve had fewer night sweats this last week since I started taking the tablets!
I’ve been eating really healthily most of the time since just before chemo and am now trying to build up my fitness again - your comments about hearing other people say that these things have helped will spur me on to continue.
Ruth xx
Good on you Bibi! It’s so difficult when posting isn’t it… I never want to diminish how rotten it is for people who have bad SEs, but at the same time really want to give hope to people who are worried.
Good luck anyone who’s about to start on Tam. I’m 3 months down, only 117 to go ?