Tamoxifin

Hi spidburf,

I picked up my prescription for tamoxifen today! I'm just after reading through the leaflet and I suppose like all medications the list of side effects is frightening. I suppose the main ones are that it mimics the menopause and that we hopefully manage ok on it. What dosage are you on? I'm on 20 mg once a day. I'm going to try taking mine at night as a friend did that and she said had no side effects at all. I'll see how that goes! Is anyone else taking it at night?

Mel

Hi spudburf, mel
I finished chemo yesterday (yay!!!) and am due to start tamoxifen in 5 weeks. My oncologist recommended I take it at night so that's what I'll be doing also. They gave me a printout from the macmillan website which is pretty good, not sure if that's what you guys got. But they said to me yesterday they have to list the side effects and just because they are there doesn't mean to say we will get them. The dreaded hot flushes seem to be the worst. But there's a link on that website on managing the worst of them too, cutting down on caffeine etc. Good luck both with the tamoxifen!

Hi everyone
I've been on Tamoxifen almost a year now. Side effects ... Em... Let me see... (only kidding ) By far the worst for me are the hot flushes at night. I discussed same with onc who put me on Clonidine to try and ironically it really did help with the hot flushes but my family begged me to stop taking them as I wasn't very nice to live with while on them .. So now I'm a nice (ish ) person again who's awake a lot at night! I really haven't noticed any other major change except I used to take it at lunch time and found I was absolutely wrecked in the afternoon so then I switched to taking it at night and that seems to have helped a lot. Personally though whatever the side effects I'm going to stick with it as anything that can help me stay cancer free is worth it

Resolute x

Hi Spudburf!
I have been on Tamox since mid August, and have noticed only the following:
On the negative side: the odd night sweat (maybe twice a month) which does not last and does not keep me from falling back asleep quickly; most of all, very reduced libido and vaginal dryness
Now, that is a bummer !
On the positive side: no more outbreaks of zits (they were'nt a big issue, but now I have none, even when I indulge in my peanut butter cravings).
I too was really stressed about it, and my onc said "if all the drugs we prescribed had as little side effects as Tamoxifen, breast cancer treatment would be a walk in the park".
All in all, it's OK. I am trying to address the libido issue, and am blessed with a patient and loving husband who is taking all this in his stride.
Good luck with Tamox, and the rest of your treatment!
Catherine

PS - I see others have stated when they take their Tamox.
I take mine in the morning with breakfast, because it's the easiest way for me not to forget. I have a wee alarm on my phone to remind me every day at 7 am. My onc told me that the time makes no odds, it's just about making sure you don't forget to take it once a day - so whatever works for you.
Catherine

Hi Spudburf, well done on completing your chemo and having your mastectomy , that's a big one isn't it. I only commenced Tamoxifen 14 days ago. I too read all the side effects then decided to forget them and just get on with it. To be honest doing ok so far the only thing is the last 2 nights I am awake from 5.30ish and dont go in to good sleep after that.Is that connected to Tamoxifen I don't know.There are so many issues and worries for us all in relation to all the treatment , some of us are affected more than others.It comes down to try it and see how it goes.Best of luck with it Spudburf.I take it around 2 every day with lunch.
Regards,
Happymum.

Hello to all those on Tamoxifen,

I saw a reference earlier in this thread to cutting down on coffee. You might be interested to know that a Swedish study has shown that moderate coffee consumption is beneficial to women taking Tamoxifen

http://www.lunduniversity.lu.se/o.o.i.s ... _item=6045

The downside is that it does trigger hot flushes

Coffee has got a lot of flak over the years but the consensus now seems to be that the research on coffee was not separated from that of smoking (hence the bad reputation). Now it seems that for most people moderate consumption good for you.

http://www.hsph.harvard.edu/nutritionsource/coffee/

Best wishes to all

Kath

Hello Kathleen,
I always enjoy your well researched and scientific approach to life.
Thank you for the reports.
I know that one can never conclude anything general from one's own experiences, but for what it's worth, I consume vast quantities of coffee every day, and this has not triggered hot flushes for me - I get very few, and they're more like night sweats a couple of times a month.
But as they say, your mileage may vary
Catherine

Hi all, thanks so much for all the advice. I'm starting it tonight so fingers crossed. I got a reprieve from my oncologist for a week because I got fab news from the results of the pathology after my mastectomy. 100% response to the chemo so no radiotherapy and no cancer to be seen anywhere!!! Yey!! So so happy I'm still on a high!

Roll on reconstruction in November!!

Hi spudburf
I'm so pleased for you getting your results! I remember how I felt when the onco type test came with a low score and I didn't need chemo Stay positive regarding tamoxifen and hopefully you'll get no side effects
Resolute x

Hi all,

Just got my script for tamoxifen today, before I even start it, I am having outrageous hot flushes at night, the hat is on the hat is off, the covers are thrown onto the floor and then their dragged back onto bed, I'm not even gonna go into the bed attire. Can I take it that the tamoxifen is gonna worsen the flushes? Anyone else currently on the herceptin at the moment, have also just,started my year of this, may also do a clinical trial, waiting to see if I am suitable candidate, it's,the TDM1, anyone currently,partaking in this?

Had surgery two weeks ago mad due to have radiation, but it may be a other eight weeks before I start, was thinking of going back to work in the next week or so,,part time, but afraid,I won't be able, I seem to get fits,of,tiredness. I can wake up,some mornings and bounce,out,of bed, but an hour,or,two,later feel totally drained, anyone one else the same. If I go back to work I don't want to be off in a week or two because I am too tired to keep it up. Anybody else had this?

Hope all are keeping well.

Hi Spudburf,

Great news... Really happy for you.....
Unfortunately I had some cancer in lymph node cells that were removed during mas stormy so definitely radiation for me... But also on the upside I hope to have new boobies by March '15.

Good luck....

Thanks everyone for all the advice. I'm still on tamoxifin but its driving me crazy with hot flushes and lack of sleep. Meeting my Onc on 4th July so he may change me onto another drug with less side effects. He wanted me on it for 6 weeks first as that's how long it takes for the body to get used to it but I was having hot flushes before I started but now there much worse! Not complaining though as its a must to prevent cancer returning so I'll soldier on...

Hi All,
On tamoxifen two weeks now, I have found that if I eat mints jt seems to help with the flushing. Keep a packet beside the bed to remember to take them before I go to sleep.
Might work for others too.

Night