Bottle 'o Tamoxifen

LiMa66---Welcome and wishing you no SEs on Tamoxifen! I've just finished my 5 years and did pretty well on it. Here's my advice....keep a journal. You will probably have at least a couple of SEs and can come here for advice on what to do for them. At some point, supplements may be added. It will really help to know any troubles you have and you can look back and kind of put together a time line. You may find some supplements don't work or make you feel even worse.

If I were to do this all over again, I'd start with upping my water intake. T is considered to be very dehydrating and a lot of people have nausea and dizziness early on which tends to go away. I found water and a good probiotic helped with that. And if you get joint pain, try turmeric with the black pepper already it (Gaia is my favorite) and ginger. Both are anti inflammatories which will help. Magnesium seems to help with joint pain for some as well. Some like it for hot flashes. Some use it for constipation. Vit D is a must I think. Getting your levels up to normal will make you feel better and help prevent recurrence so some doctors think. A good fish oil and a baby aspirin are also recommended as they can help with the blood clot risk from Tamoxifen, again so some doctors think. I also found that after all my surgeries I suddenly developed a tendency to get colds. Someone turned me onto Olive Leaf Extract (I like Swanson's which has a good amount in it) and haven't had a cold in 3 years!! And exercise, exercise, exercise! It will help with joint pain along with just generally making you feel better. And supposedly reduces risk of recurrence by 30-40%!! That is a good number! And lastly, depending on your circumstances, I'd ask your Gynecologist for a baseline transvaginal ultrasound. It will be a good number to know when you tell your gyn that you want them to keep an eye on your endometrial lining since T can mess with it. (And maybe even ask about a bone density test for baseline numbers depending on your age as well.) You should also get a yearly eye exam since T can cause cataracts. Both of these things are very low risk, but you should be aware of them. And all of my doctors say BC women should have a colonoscopy every 5 years instead of 10, depending on age.

So now I've looked back and realize this may be a bit overwhelming! Sorry! Didn't mean to do that to you! All you really need to know is if you have any questions, come here! Good luck!

LiMa, welcome. Hope things go good. I've been on tamoxifen since Oct. I didn't have much for SE at first but they are slowly starting, i completely agree about the journal. I've done that since i started taking meds. Mine is very detailed, time i took pills, what i ate, how much, what i ate before or after. I have a friend who's a pharmacist and he said certain foods affect people and meds different.

Thank you both. I've got the bottle sitting here, staring at me. Water and journal in hand. Guess I just need to do it. Take the pill already. LOL

runor--you are right, this article DOESN'T mention tamoxifen. It was just to let women know that estrogen is still important to us although we are told by our doctors that it's like poison for us ER+ cancer survivors.

From what I read, Tamoxifen is a SERM, a selective estrogen receptor modulator. It doesn't "block" cancer cells, cancer cells have estrogen receptors that have a shape specific to estrogen. Tamoxifen is the same shape so competes for that spot. It fits in there, but can't "feed" the cell like estrogen could. Different tissues in our bodies (ie, uterus, bones, liver) have estrogen receptors but they are different in structure. This is why SERMs are "selective"--they select the cells in the breast and brain to attach to. This results in brain fog and the hot flashes (temperature is controlled by the hypothalamus). Yes, tamoxifen turns on estrogen uptake in the other tissues like the uterus. Runor--that is why I'm STILL dragging my feet with starting this drug.

capecodgirl--I have the same school of thought.

lala--thanks for the tips, why only 5 years? They are now recommending 10.

Thanks Chiarara. I did get a baseline ultrasound of my uterus so they know what it looked like pre Tamoxifen. 2 days in and the only thing I’ve noticed is my eyes are a bit blurrier than usual.

https://www.answersbeyond5.com/

The link above is to a website that describes the Breast Cancer Index. I watched the video on the bottom right corner, and found it interesting. It claims that only 3-5 out of 100 women will benefit from greater than 5 years of Tamoxifen. That's pretty low, I think especially when all the talk of everyone taking it for 10 years.

My doctor said 5 years instead of 10 due to my low oncotype score.

Hi All! Thanks for the reminder to drink plenty of water. I'm so bad about it. My GP also added a baby aspirin a day. something I'm surprised my MO didn't suggest. I started taking the vertigo meds and they are a no go unless I plan to stay in bed. One pill and I'm out for the count. Hopefully the water will help!

Hi everyone! Today is my first day to take Tamoxifen. Like many of you here, I've been very nervous and have hesitated taking it. I was prescribed it in December and my oncologist was disappointed when I showed up at my 3 month follow-up to report I had not been taking it. I told her all my concerns about SEs, clots and cancer and she said while they do cause SEs in some people she has more patients that have no SEs. As for the clots and cancer, she said those were rare and because I'm in good health it's not likely. I'm a bit of a hypochondriac so my fear of something happening is definitely worse than reality. I'm going to take a pill everyday and try not to worry and psych myself out.

Happy Monday!

I started tamoxifen March 1st, so four pills in now. I have noticed very vivid dreams, anyone else have this? Also last night my pulse/heart rate something was pumping quickly, I could feel it in my chest and left arm. The dreams I can handle, but the other kind of scared me.

Cheryl

I had heart palpitations on Tamoxifen. And nausea and dizziness and bloating. Very scary and a real pain in the butt. Try upping your water intake. Tamoxifen can dehydrate you and the water will help will alot of those SEs.

Perhaps playing around with when you take it may help with dreams?

Hi Vampeyes and LiMa66,

I am 5 months into taking Tamoxifen and I just started having a lot of vivid dreams too over the last few weeks. I think there are some old threads about dreams and Tamoxifen. I don't mind the dreams that much. I could do without my other side effects leg cramps and pelvic pain but water and walking often helps.

Wishing you all the best that are riding the Tamoxifen train.

Hugs to all,

Sara

I have a sort of disconnect between the women I know in real life who take tamoxifen, and the experiences of what seems like most women who post on the forums.

I know maybe half a dozen women locally, all a bit further down this road than me, and none of them have any problems, even seeming a bit surprised that it's a possibility.

I can't say for certain that anything that's happened to me is the tamoxifen. Put on about 15 pounds, and now have early signs of cataract. But both those could be nothing to do with it.

I did have terrible mood swings, anxiety and downright despair. But I was in the middle of biopsies and investigations for possible endometrial cancer, and I hadn't even started the rads for my breast cancer. So was it the drug or the situation I was in? Anyway, I got prescribed an antidepressant which I still take, and got the all clear from the biopsies, and now I'm fine. Though not quite brave enough to come off the antidepressants though...

On a day to day basis, I don't have any side effects at all, I don't take any supplements. I asked if I should take baby aspirin, the doctor ran some blood tests and said the risk of a bleed was higher than any benefits from it.

I know if I have any further endometrial issues I'll have to come off it straight away, but in the meantime I'm happy an annual TVUS is going to pick things up at an early stage. I'm 18 months in, and so far so good.

But I do wonder if these forums are overstating the risk of side effects, I see women who've done chemo and rads say they are more afraid of the tablets than the mountain they've just climbed, and it seems a shame that there is such fear of it.

LiMa

I also sleep on my front, it surely has made life difficult sometimes. When I was talking through the lumpectomy/ mx with recon options, the surgeon told me I would have to make sure I never slept on my front if I had reconstruction. I think that was the dealbreaker, it was bad enough after the lumpectomy, but at least that passes.

Luckily my antidepressant has one side effect, it causes drowsiness so you take it at night. I sleep really well now, better than I ever did.