Bottle o Tamoxifen
Comments
-
Yes, definitely hydrate. That is the side effect I have,,,dehydrated.
0 -
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.
0 -
I started Tamoxifen a week ago, so far only extreme hot flashes, more frequent at night. It could be alot worde so I won't complain. Dawn
0 -
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.
0 -
Pamela23---I was also told 10 years when I started Tamoxifen but as I approached the 5 year mark my MO ran the new BCI test. He's a very firm believer in it. My results showed High Risk for recurrence (albeit very low end of high risk at 7.6%) but NO benefit for continuing T. My MO spoke with the company that does that test and they said the only benefit I could possibly receive is the margin of error which is about 1/2%. My MO said if I wanted to continue taking it, he was fine with that but it would be pretty much a placebo effect. And I would still be at the increased risk for blood clots and strokes and cataracts (not endometrial cancer since I had a total hysterectomy). After much discussion, he felt I could get my recurrence risk down to around 2% just by exercising daily, eating well and losing about 15 pounds which is what I gained over 5 years on T. Also there are supplements that lower your risk such as turmeric, Vit D, fish oil, baby aspirin and others. I'm going to consult my holistic doctor for which ones would be best for me. Some doctors don't really trust the BCI test yet but all of mine do and I have a very good family friend in another state who's a top MO, and he thinks it's one of the best tests to be developed in a long time so I'm comfortable following the results.
0 -
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.
0 -
It's been one year now on Tamo. Throughout the last year Effexor and Gabapentin were added to the cocktail. I am now hitting the wall. I have CHRONIC fatigue. I am worried about potential liver damage or any other long term affects. I am considering taking myself off this carnival ride.
0 -
My doctor said 5 years instead of 10 due to my low oncotype score.
0 -
Thanks lala & GoKale for the info! I'm hoping there will be new revelations in the next 5 years that can really make these decisions more personalized. Nice to see they are getting there!
0 -
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!
0 -
I took Tamoxifen for 10 years because I had no side effects and was male so they thought no harm in doing it. Back on it again for the last 15 months, I've almost been on Tamoxifen for 1/4 of my life. It seems to do the job even though I'm now weak ER+ and PR- (was moderate) as I'm still here after 19 years
0 -
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.
0 -
GardenGirl11, you had the RX for Tamoxifen and didn’t take it all those months? I honestly almost did the same thing but decided it was inevitable I was not getting out of taking it at some point. Just remember you aren’t alone taking this stuff and there’s plenty of support on this page about SE’s and anything else regarding this dreaded drug. Try not to worry and freak yourself out.
0 -
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
0 -
I have vivid dreams. I think it's because my sleep is messed up from Tamoxifen. I am still trying to figure out what to do. I am still taking .25 of Xanax (during treatment it was .50). I was off it completely for a while but traveled a lot last year for 3 surgeries and other stuff so I needed sleep.
0 -
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.
0 -
Vampeyes- I'm on day 5 and have noticed the vivid dreams also. I've been keeping a journal to keep track of diet & water intake. May have to add a dream journal.
0 -
Perhaps playing around with when you take it may help with dreams?
0 -
I mentioned a couple weeks ago my Oncologist has prescribed Afinitor to go along with Tamoxifen. I've been waiting for Afintor from the specialty pharmacy but today received a letter from the pharmacy stating my insurance denied coverage unless I take Exemestane (Aramosin) another anti-hormonal drug, in tandem.
The funny thing is Tamoxifen costs about $65 a month while Aramosin costs $650 a month. Does any of this make any sense to you? I would love to hear your opinions/experiences.
Thank you
Amy
0 -
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
0 -
I had vivid dreams when I started tamoxifen, but they tapered off. Back to the boring kind of dreams now I guess. The leg cramps had tapered off but seem to be going for round 2. Last one was on the outside of my lower calf. It yanked my foot at an angle that no foot should ever be! I had to literally grab my foot and wrench it back into place. Leg hurt for days! Sheesh!
0 -
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.
0 -
Dizzybee- you make a valid point. Many "side effects" may well be caused by other reasons. I have gained weight, but I've also been less active. I finally took the laundry off the treadmill last night so I can use it properly. I'm constantly tired, but I also don't sleep well. I'm a stomach sleeper which is frowned upon with these tissue expanders. I've had some indigestion, but I also added some V8 to my diet which could very well be the culprit. The dreams, not sure about that one. I have started keeping a dream journal. May be attributed to some anxiety, lack of control, frustrations.
I just remind myself that this Tamoxifen is a tool and the show must go on. This too shall pass.
0 -
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.
0 -
Hi all,
I posted this question on another thread but thought I'd try here also, I started taking Tamoxifen about 3 weeks ago and am having terrible upper back and shoulder muscle pain. Ibuprofen doesn't help, a massage had no effect and neither does stretching. Heat does help but it's hard to walk around with a heating pad LOL! anyone else ever experience anything like this? My doc said he hopes it might just resolve on its own in a few weeks
0 -
Dizzybee--Your surgeon said you could never sleep on your stomach again with recon?! Is that for DIEP flap or something? I have implants in and sleep on my stomach all the time. I also do a lot of yoga on my stomach. My docs said no problem as long as I was properly healed up. Hope I'm not messing something up. Did your doc say why?
0 -
Lala
I didn't have a mx so I can't really answer. But she scared me to death just saying it because I know I'd just turn over in my sleep. After each surgery I 've ended up turning over and over and waking up because I was laying on the stitches.
She wasn't what I'd call the sympathetic type, I chose a different surgeon for my lumpectomy and reduction to the other side.
I might have made a different decision if I'd known it was okay once you're healed!
0 -
Today was one of those days. I don’t feel good. Nothing particularly wrong, but I don’t feel right. On the verge of tears all day. Exhausted. Just a blah day. I don’t have this very often, so today it really got me. I came home early from work and went to bed (around 2:30), got up and ate dinner and am going to bed now. Hope tomorrow I feel more like myself. Today I was a mess. A cold mess. I froze all day. Hot flashes, where were you when I actually needed you
0 -
Patsfan12, I found that Salonpas patches help me. I only used the plain ones, but they have some with lidocaine now, too.
TaRenee, sorry you are having a rough day. Hang in there. This too shall pass.
0 -
Patsfan12 - I have that pain, not from the tamoxifen though. A friend told me to do pushups, even wall pushups would help strengthen the muscle. I just started 3 days ago so I couldn't tell you if it works yet.
TaRenee - I am sorry you had such a bad day today. I do hope you haven't caught the flu. {HUGS}
Glad I am not alone with my strange SEs. I wish those vivid dreams were snit Brad Pitt though. Lol
0
