Hi all ?? I am due to start tamoxifen, looking at the packet & have stage fright ?? I am not looking forward to it. I finished radiation 2 1/2 weeks ago & as I was quite badly burnt, have been waiting for that to heal. I am running out of excuses, I am nearly there. I'd love some feedback as to when others took it, what time of the day, how it made you feel & any helpful hints along the way. Has anyone decided not to take it. The advantage for me is resonably minimal, but I guess I need to throw everything at doing my best to hopefully make sure there is no recurrence. I can't take letrozole as my bone density is osteopenic, what a nasty surprise that was for a hard out runner ! Thanks in advance for your help, ladies, much appreciated ??

Hi Aqua Sunrise, I'm a runner too. Have you been able to run during your treatment? I didn't have to have radiotherapy but I had chemo and a mastectomy. I have just passed 5 years on tamoxifen. I was wanting to stop after 5 years but the oncologist wants me to stay on it for 10. The main reason I want to stop is because I feel like it is bad for running and recovery from injury but I checked with them about this and they said it isn't. So, for now at least I am staying on it. They said staying on it for another 5 years reduces my chance of dying by 2% which seems insignificant to me but I also feel like I have to do everything possible to prevent cancer returning. When I started tamoxifen it caused hot flushes and sweating, particularly night sweats. For me, those were the only side effects. They were extremely annoying but not debilitating. They faded away eventually. I take my tablet at night just before bed. I have made the routine that I take the tablet and then set my alarm clock for the next morning. This is how I remember to take it and whether I have taken it yet. I also have bone density tests which show osteopenia. I went to a bone specialist who said it was ok to remain on the tamoxifen which was a bit disappointing as I was hoping she'd say I had to come off it. But they're monitoring it so we'll see what the next lot of tests show. Good luck with the tamoxifen. Give it a try, you can always stop it later if you need to.

Hi, I have been taking tamoxifen for 3 and half years. I had mild hot flushes in the early days. Hardly ever now. One lady on here recommended taking magnesium to reduce hot flushes (and sleep better) and it seems to have helped me. Although I suppose the hot flushes might have faded away anyway. It could be co-incidence. Only other side effect that I am pretty sure is due to tamixifen is that my hair is not as thick as it used to be before BC. Initially I thought it was due to the chemo but have read/heard some say that tamoxifen can have that effect. It's not a major problem. I still have plenty of hair thank goodness. Otherwise I'm fine with it. No weight gain or anything. I do work quite hard to keep fit and healthy - I run a bit too and am training for a 10km fun run at them moment. And I try to eat a pretty healthy diet and keep alcohol to a minimum. I think these things help. I take my pill first thing in the morning for what it's worth. I worried that it might effect my sleep but I don't think it does. That is just my routine now. Everybody is different and some people do have unpleasant side effects. I would suggest you give it a try at least. You may find that it is fine. And it does offer us proven extra protection against recurrence. Good luck.

Hi. I've been on tamoxifen for 8 months now. My biggest side effects were hot flushes, which have subsided now, fatigue is my biggest side effect. I have wonderful people around me and hope you do too.

Hi Allicat ?? Thanks so much for the feedback, I ran 12 days or so after my lumpectomy, all went well. I didn't run at all during the radiation as I didn't want to compromise my skin integrity at all. Lol. Happened anyway. The worse case of burning anyone had seen forever ???? & I am very tanned, who would have picked that ? No one it seems ! Anyhow, tried a run 9 days or so ago, skin still abit fragile then & a new small welt appeared but ready to give it another whirl tomorrow. I walk a lot & am bikram yoga ing diy at home these days. Is still surprisingly satisfying, even tho I am adapting some of the breast squashy poses to suit ! Nearly ready to give that another whirl as well ?? My physiology sounds a lot like yours. The tamoxifen has potentially only marginal benefit, but like you, feel I have to do everything possible to hopefully prevent a recurrence. Your comments were very helpful, thank you, I will try it at night as well. Did you get weepy at all ? I hear some people do. Xoxoxo ????????

Hi jandy23 thanks so much for that ?? I will try the magnesium, oh, God, my hair is so fine anyhow ! Have had it cut short as I have heard it can cause hair thinning & decided I can ( hopefully ) just fluff it up & no one will ever know ! Maybe ! Good luck for your 10k ! Aren't they sooooo much fun ? Xoxoxo

Tamoxifen | BCNA Online Network

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Allicat
Member
10 years ago
Hi Aqua Sunrise, I'm a runner too. Have you been able to run during your treatment?

I didn't have to have radiotherapy but I had chemo and a mastectomy.

I have just passed 5 years on tamoxifen. I was wanting to stop after 5 years but the oncologist wants me to stay on it for 10. The main reason I want to stop is because I feel like it is bad for running and recovery from injury but I checked with them about this and they said it isn't. So, for now at least I am staying on it. They said staying on it for another 5 years reduces my chance of dying by 2% which seems insignificant to me but I also feel like I have to do everything possible to prevent cancer returning.

When I started tamoxifen it caused hot flushes and sweating, particularly night sweats. For me, those were the only side effects. They were extremely annoying but not debilitating. They faded away eventually.

I take my tablet at night just before bed. I have made the routine that I take the tablet and then set my alarm clock for the next morning. This is how I remember to take it and whether I have taken it yet.

I also have bone density tests which show osteopenia. I went to a bone specialist who said it was ok to remain on the tamoxifen which was a bit disappointing as I was hoping she'd say I had to come off it. But they're monitoring it so we'll see what the next lot of tests show.

Good luck with the tamoxifen. Give it a try, you can always stop it later if you need to.

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Tamoxifen

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