Well here I am, about to start on another new journey, this time it’s tamoxifen.
I’m terrified about starting this. I was hoping, after the trials of chemo, to start feeling well again, to lose some weight, to get my hair back, to try to get back to something like normality.
Now I feel like I’m facing years of joint pain, sleepless nights, nausea, weight gain and possibly losing the beginnings of my hair regrowth. Honestly, what is the point? When do we ever get to live again?
My cancer is ER+ but only measures 3 out of 8, so I’m not even sure what sort of benefit I’ll be getting from Tamoxifen.
I suppose until I try it I won’t know how it effects me, but it’s put me on a real downer. Is there anyone out there who has used tamoxifen and not had all these horrible side effects?
Sorry to moan, I do usually try to stay positive. I think I’m always like this when I’m about to start some new treatment but would really appreciate some reassurance ladies.
Hi Wubbly
Try to keep positive, you may not get any side effects at all, or very little. If you read the other posts about Tamoxifen on here there seem to be a number of ladies who cope with it OK.
I’ve only just started taking it, started 5 weeks ago, and so far not noticed any side effects at all. My GP put me on a very low dose of Amitriptyline to help suppress hot flushes before I started the Tamoxifen, so either that’s working or I’m just not getting any.
Good luck with it,
Sarah x
Thank you for posting Sarah. It’s good to hear that you’re doing well on the tamoxifen.
I think I wasn’t really prepared for it. I went to see my Onc about starting rads and he just came in with a script for this, so I haven’t really had time to get my head around it. He went through all the side effects with me, but didn’t mention anything about drugs to help alleviate them, so it’s good to know that there might be some help if I’m struggling.
It’s like everything else on this journey I suppose, I won’t know how I’ll be until I start the treatment. It’s just the fear of the unknown again.
Can I ask what time you take yours? I’ve read some ladies prefer morning, others night times. I was thinking of going for about 7pm, hedge my bets!
Hi Wendy
I take mine first thing in the morning, but only because that reduces the chances of me forgetting to take it! I haven’t tried taking it at other times, since I’m happy with the nil side effects I’m getting so far (fingers and toes crossed!)
Sarah x
I started tamoxifen 30th July. Apart from the hot flushes and initial slight feelings of nausea, I am ok.
Just one thing though, I suffer with acid, and had the most horrendous stomach aches, GP put me on to omeprazole, (similar to lanzoprazole) and I am fine now. If you have the same problem, take the tamoxifen at a different time of day, as my pharmacist says omeprazole and lanzoprazole interferes with absorption of other medication. I take omeprazole in the morning, and tamoxifen at tea time. The brand I am on is APS. Hope this helps.
Hi wendy, i have been taking it for 4 weeks now, i take it first thing in the morning, didnt want to risk more night sweats by taking it at night.
The flushes did appear to get more frequent, i went to the gp this week, he has prescribed me gabapentin, 900mg a day, for neuropathic pain in my arm and shoulder, which also are good for hot flushes at that dose, i can honestly say, within 2 days of taking them, i have had 2 full nights without the sweats, and they are minimal during the day. So fingers crossed!
Good luck with yours, but dont worry, there are other things that can help with the se’s.
Well, I’ve just popped my first pill, so I guess time will tell! If I don’t get the nausea, I think I’ll go for taking it early morning.
Sharon, I’m already having trouble sleeping through hot flushes brought on by tax, so I don’t really want to make them any worse.
Just wondering, has anyone tried the chillow pillow? I’ve read mixed reviews so I’ve just switched to a foam pillow rather than feathers and it does seem to retain less heat, or maybe it’s just the cooler weather?
Thank you to everyone for your supportive posts, I’m feeling much more positive.
chasepines, I’ve got some lanzoprazole from my chemo days, although I’d stopped taking them now treatment is finished, so I think I’ll see how I go today and start them again tomorrow if need be. Thank you for that : )
hi all i am just about to start taking tamoxifin and am worried have been on arimedex for a year and have to change because they havnt worked for me. I only got hot sweats and slight nausea with arimedex, i tolerated it quite well but tamoxifin seems to have more side effects , very worried about the blood clot issue.I to hate taking new pills because you never know how they are going to make you feel. i am going to take them at lunch time after eating something with a glass of water and see how that goes. Nice to hrear some positives on it and there are hundreds of us out there on it so it must be copable.
I’m about 10 weeks into tamox. Hot flushes increased and the tamox made me feel slightly anxious, so when I woke up in the night from the hot flushes, I took ages to get back to sleep.
A week ago I went back to my yoga class after the summer holiday break and slept for 10 hours that evening, only getting up to the loo once and going straight back to sleep - it seems to have broken the cycle. So it doesn’t have to be terrible for everyone. I have to admit it was very tough for a few weeks when I was getting very little sleep, but there is light at the end of the tunnel.
I feel the cold so much that the flushes don’t bother me at all, I only wish I knew how to trigger them!
I have been taking Tamoxifen for 6 weeks, so I guess that there is still time for SE’s to kick in, but up until now I really haven’t noticed any at all other than a few more hot flushes, but even they seem to be settling down over the last two weeks. I take mine first thing in the morning too, as I found it more difficult to get a good night’s sleep if I take any time after 4pm.
I do have a lot of new downy hair on my face. I don’t know whether this is anything to do with the Tamoxifen or just a result of my hair growing back post chemo. But my hair is growing in well and no problems with weight gain to date. So hopefully you will be as lucky as me.
Hi Ladies, well, don’t know if you want to be like me or not… I have been on good old tamoxifen for nearly 18 months now and apart from slight nausea for the first week or so I have absolutely no side effects ! This is great of course but a double edged sword that makes you wonder if it is actually working ! My onc and gp say just be thankful,some women sail through the menopause with not many side effects,maybe i can just cope with depleting oestrogen. Am not going to worry about what ifs,am living for the moment and will just deal with whatever does or does not happen in years to come.
I take mine at night(wockhardt)with an evening primrose oil tablet,good luck to you all and hope you don’t suffer too much with side effects.
Hi
I’ve been on tam for 14 months and had problems with hot flushes at first. My GP put me on clonidine at first which didn’t help but the venlafaxine which is brilliant. My biggest problem now is my desperate battle to loose weight.
Nicky xx
Thank you to everyone for taking the time to reply with your experiences, it really helps to hear some positive stories.
Well, so far, so good. I’ve only taken 3 mind you, but nothing to note at this stage. Here’s hoping I do as well as both Sandra and Jacqui.
The yoga is a great idea Gretchen. I used to do it years ago and it’s certainly worth looking into again. I’ll probably wait until I’m finished with the rads and have a bit more time on my hands, but a great idea to help relax and get out of the house too. I’ll have to give some thought as to what to wear on my head though. I’m fairly self conscious in new situations anyway, nevermind walking into a room full of strangers with no hair and a false boob!
Terri, here’s hoping the tamoxifen is good to you too x
Hi Wendy,
Ive corresponded with you before,I think it was in the IBC sub forum some months ago,so presumably you have survived the worst part of your journey and come out smiling,very well done and keep on going onward and upward,eventually youll be seeing the white coats just every 6 months like I am now. I was put on a tablet called Femara initially and felt quite ill now I think back but wanted to stay on it because Id been led to believe it was the cream of the crop so to speak. However the joint pain was worsening with every month plus the constant though slight nausea. I was then given one called Exemestane,even worse so all that was left was Tamoxifen,I felt better within days and the soreness in my good boob vanished. Ive had Tamoxifen for 4 months now,feeling well all the time has allowed me to move on and leave BC behind me,I do hope it suits you as much as it suits me. The last prescription I collected was the generic variety,hope I don`t have to eat my words! Take care and get as much rest as your little un will let you, love Mags xxx
I remember you from the IBC thread, how are you getting on? I hope you’re well?
Thank you for your kind words, chemo was indeed doable, as everyone told me. I have to say that I got off quite lightly with the side effects, although I had to have a reduced dose of tax for the second and third. All over now, it’s hard to believe how quickly it went by and my hair is coming back, although it does appear to be the colour of belly button fluff!
Just got my appointment through for the rads, I’ll be starting on October 15. Not too worried about that at this stage.
Still no sign of any significant side effects from the tamoxifen. If anything, my flushes seem to be fewer but more intense when they do come. I can cope with that!
ive been on tamox since April this year. I have hot flushes, weight gain, etc. But my flushes seem to be getting less - im hoping the cooler weather will help.
eva
Hi there, I just wanted to say that i have been on tamoxifen for 5 months now and have had no side effects that i have noticed at least. i was really worried before hand after tormenting myself reading peoples bad experiences but i have to say (and i can only vouch for myself) I am more compelled to write about my experiences on the forums when I have had a bad experience than when things are going well I normally don’t feel the need to vent/seek support/try and discover i am not alone when all is running smoothly. just remember we are all individuals and our bodies handle things differently. i was told by my onc that I would probably find it really hard as i am young (26) and this makes the side effects worse. Sometimes i worry that because I am getting no side effects peraphs it’s not working.
I’m a few weeks in now and releived to say that not really noticing any side effects either. Although my paranoia keeps trying to tell me I’ve got a thrombosis in my left leg! Highly unlikely, since the pain started the same day I started taking the tablets!
I’m like you, the lack of side effects is making me worry that they might not be as effective as they should, silly isn’t it? I don’t know, I’m never happy!
Hi Wubbly
Glad to hear that you’re doing so well on it, you were so worried about it beforehand. It’s good to see on this thread that there are a number of women who have no problems with it. As bubblijubblies said, there’s a natural tendency only to go onto these forums when things aren’t going well.
I too am experiencing negligible side effects, even though I’m on Tamoxifen and Zoldadex.
Sarah x