2017 Premenopausal Tomoxifen Newbies

Hi,

I was very unhappy about taking this hormone treatment. I felt I was going to have thousands of horrible side effects and pile on weight. The reality is I have little or no side effects at all! I take the pill at about 10pm before bed and don't even notice any discomfort on this. I have few if any hot flushes and in fact if I stay off caffeine I get by with zero flushes.

Please don't be afraid of a drug that is there to help you. I think you need to know that the vast majority of women on these pills have no problems with them. Take the treatment you are lucky enough to be offered.

I've been on Tamoxifen for about 3 months. My side effects are hot flashes and night sweats - and the ensuing broken sleep that comes with the night sweats. I'm working on how I can reduce those effects - exercising more, reducing caffeine, no alcohol, cool clothes, lots of water etc. The effects are annoying, and I'm tired.

However - I am going to continue to take the drug. I've had surgery, chemo and radiation. I want to know that I've done all I can do to reduce my chances of recurrence.

Now let me go turn up the air conditioner

Hi ladies!

I had right MX in December and met with the MO today. Wasn't expecting her to recommend Tamoxifen because my BS didn't think it would improve the odds of preventing DCIS in my remaining breast by much. My MO wants me to try it and I'm seriously considering it. Just worried it will throw me into full-blown menopause because I'm 53. Was having regular night sweats 2 years ago but made some changes (exercise, diet), and they went away. Anyone pre-menopausal, in their 50's,and on Tamoxifen?

Sophiemaroon,

Thanks for the info and perspective - I'll check out out the study you referenced. I too planned to be "surgery and done." Hate taking medicine unless absolutely necessary. (It took my family doctor years to convince me to take a long-acting inhaler for asthma). Glad you mentioned the possible effect on thyroid. I have a benign thyroid nodule that was biopsied a few years ago. It had shrunk the in the latest ultrasound. Will ask my MO about possible effects on nodule before deciding on the tamoxifen. Thank you!

Hi everyone!

I saw an MO for the first time yesterday following a right mastectomy in December. The good news is no chemo or radiation. Now I have to decide on Tamoxifen to protect my left breast. The MO estimates my risk at 10-20% and about half of that with 5 years of Tamoxifen.

I'm 53 and pre-menopausal. Haven't had night sweats in more than a year since increasing my excercise. Also careful about my diet and maintaining a healthy weight. Not looking forward to sleepless nights, should they return.

Would like to hear from anyone who was in their 50s and pre-menopausal when they started Tamoxifen. What symptoms did you experience or didn't you

Thanks so much!

J

My endo says tamoxifen can affect how the thyroid works/doesn't work. I've taken thyroid medicine for years and my Hashimoto's was well controlled prior to starting Tamoxifen, but my endo wanted to see me /have my levels checked every 3 months (instead of every 6-8 months as usual) after I started on the Tamoxifen to be sure it wasn't causing problems that would make it necessary to adjust the dosage of my thyroid medicines.

No problems for me, everything in the thyroid dept. stayed the same, but IMO our MOs are not the best sources of information on some of the side effects of Tamoxifen. Mine certainly tends to play down the side effects of Tamoxifen, as do many MOs, if what I read on this site is any indication.

If you have pre-existing thyroid problems, you should be consulting an endocrinologist about how Tamoxifen (and radiation treatment) might affect your thyroid and thyroid medicines. My endo, not my MO, also told me not to take my thyroid meds and tamoxifen at the same time.

I think even if I didn't have a thyroid condition I would still want to have my thyroid levels checked once a year while on Tamoxifen. Just to be sure. Checking thyroid levels is a simple blood test any GP can order. See an endo if there is a problem. IMO thyroid testing should be more routine than it is for everyone.

Hello all! I'm starting tamoxifen tomorrow and wanted to say hello to other newbies. I declined to take tamoxifen three years ago when I was diagnosed and had my first surgeries. I was scared of the SEs and wanted to believe I could take good care of myself and reduce my risk. My tumor was small....I was in control. After three years my thinking has changed. I want to maximize my chances that I won't have a recurrence, so I'm going to give this a shot. I'm 44 and the prospect of how my body and sexual desire may change weighs heavily on me. But I won't know until I try. Hoping for the best for myself and all of you ladies out there!!

I didn't realize that if I take (put up with) Tamoxifen for a year I still get benefits. I thought I had to endure 5-10 years on this stuff. The SE aren't fun, but my MO changed my dose to 20mg every other day and I feel better. So if you're fed up with the SE - you may want to change the dose.

Does anyone know if alcohol increases the risk of reoccurrence? I'm meeting with various GP's and one of them told me that even 1 glass of wine (per evening) will increase my risk of reoccurrence! And that I shouldn't bother taking the Tamoxifen because it won't work if I'm having a glass of wine at night! Can it be true

Thanks Sophie!

TJL3 - I've read a lot of studies that show alcohol increases your risk of a recurrence, but it wasn't clear to me to what degree your risk goes up and with what quantity of alcohol. Saying that tamoxifen won't work if you are having one glass of wine a day seems like an extreme statement to me.

Well, two weeks in and I'm noticing a few minor things.....some fatigue, waking in early morning and not falling back to sleep, irritability, acne, lower libido, vaginal discharge and irritation. Nothing extreme and some of these things I experienced regularly before tamoxifen. I should be starting my period today and am curious to see if it comes....I don't feel any cramps or bloating which I usually do right before. The irritability and skin breakout could be PMS?

I have been taking my pill in the morning because I'm afraid I will forget at night and it is much easier for me to be consistent about the time of day if I take it in the morning. I am thinking of taking in the evening if the fatigue gets worse as that seems to work for some women. I've had a few days were I've felt really fuzzy, almost like I do on cold medicine. I have been really stressed and not sleeping well, so that may be it. Although I noticed if I get up from my desk at work and go for a walk outside, the fuzziness goes away for awhile. Just need to keep moving!!

I found out yesterday that I'll be starting Tamoxifen in a few weeks, and I've been curious/worried about what side effects I'll be dealing with as well. She said if I truly stay in menopause (chemo induced so far)- then she will switch me after a year to something else. All of the feedback is so helpful! Thanks ladies!

Hi Shaz. Good luck to you! It seems like people's experiences with tamoxifen are really all over the place, both in terms of timing and severity, so you just have to see how things go for you. Many women report that they never develop really problematic side effects or that they get better over time. I definitely noticed some odd things in the first few weeks (really strong carb cravings, spotting) that went away. In month two I started going downhill cognitively and emotionally. I actually didn't blame the tamoxifen that much, but when I went off it for awhile in preparation for surgery, I suddenly felt much, much better, and I have not been able to get myself to take it again. I felt like someone turned the lights in my head back on. I am waiting to hear from my Dr. about trying a half dose for awhile with the caveat that there is no real research backing up half-dosing, but as someone who weighs 110 pounds I may be willing to risk it. Because of the risk reduction tamox confers I am definitely going to keep trying before I give up, and I know if I stick with it the SE's will probably continue to evolve or maybe improve.

A few other things I noticed in the first two months: it reduced the intensity of my orgasms (but not my ability to have them)--a side effect I have seen no one else report! It can make you either moister or drier down there--I went the moist direction, but not too bad. Some warm flashes and night sweats, but also not too bad. My formerly super-regular period disappeared in month 2. Many women seem to have good luck taking effexor for the emotional and/or hot flashy problems but I am reluctant to layer on the meds.

I should point out that I was not in the best shape cognitively or emotionally to begin with, so I may be unusually vulnerable to such effects. Also, it may have made my thyroid medicine work more strongly, which may have intensified changes. My TSH went down and I felt noticeably less tired even while feeling terrible, which is weird. So I am probably an oddball overall, but in reading many posts on tamoxifen experiences, it seems like experiences are quite individual!

Hi Redemptive,

I wonder if your friend would mind sharing what brand or manufacturer she gets her tamox from? I have read they each have very different side effects depending upon which fillers they use....

I am doing an informal survey on which brand seems to cause the least amount of SEs for people.....

Sophie which brand of tamox are you using? Which manufacturer? I too am committed to a 3 month trial but trying to find the manufacturer that makes this and causes women the least SE's...doing my own little informal survey......

@sophiemaroon. I am a bit of an oddball too -thanks for your response.

I've been told to stop taking my tamoxifen for now until they've had me seen by a haemotologist due to a close family history of blood clots...my dad had them to his brain (lots of them, discovered during post mortem), lost his lung due to one (while alive), then died at 51 due to a massive heart attack, caused by a blood clot moved from his leg. He died 30 years ago, so technology just wasn't available then like it is now.

It is just precautionary apparently, and they've said a 2 week break isn't a problem, they sometimes tell people with bad SE's to have a 2 week break to see if the SE's stop. Once my bloods been tested they will either restart tamoxifen, or think again.

I can't say I'm not concerned, cos I am, but I'm also concerned about clots, so back to waiting, again.