"Tamoxifen Road" - Support and Encouragement
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I dropped down to 10 mg due to side effects. That has helped a lot with most of the side effects. My biggest one now is that every time I get up in the night to go to the bathroom, I have a hot flash after I get back in bed. It is like I got a little cool getting up, so my body turns up the heater and it gets too hot for too long.
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Oh dear, I'm doing well on SEs 10 months in and worried about this now... I asked my oncologist and he says it takes awhile for tamoxifen to leave your system after stopping, that it wouldn't be an instant thing.
LJDH0709 - how long after you stopped did it take for your SEs to clear? I agree re: maybe trying a lower dose?
I’m hoping since I’m in 10mg that things will continue to be fine. I guess I will just have to find out. Still so far so good today, but I’m honestly researching and doing what I can to avoid SEs, like eating more clea, and exercising to avoid joint pain, and taking it at night (that way if there are any SEs I sleep through it lol).
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I have been told by multiple doctors that it does build up and side effects can take awhile to show. And that's definitely been my experience. I was mostly fine for the first year. It's gone haywire since then but oh well, right?!
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why2015 how much longer are you supposed to Be on it? Three years is a lot - congrats on that!
How's everyone? Just finished First month of my 20mg and in a general way I feel better (when I was on fermara, which is similar, for infertility I felt well too, I have a hormone disorder And I guess maybe estrogen blocking helps??? ) Or I wonder if it's because my mindset has changed after going through the last six months with breast cancer. Whichever, the cluster headaches were only One day so far and a lot less hot flashes.
Have been scheduled for December to start the six month mammograms, I'm not looking forward to getting squished after being chopped on twice. Ow!
Good luck to those experimenting with soy!
And yes I do remember that joint pain was a side effect of tamoxifen, someone had asked about that. I do remember it because that sounded like an awful side effect to get.
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I asked my radiation oncologist if I could drop the dose to 10mg. She was very adamant that I should stay on 20mg. Sigh! I am taking 10 in the morning and 10 in the evening, although when I told her, she wasn't sure about that, but I can't see how it would matter as long as I am consuming 20 per day!
She did say if I am finding the side effects too difficult she can try me on Exemestane. But from what I've read it has similar side effects.
Seems no escaping this pharmaceutical hell.0 -
WorryThePooh, my Med Onc did not want me to split the dose either. I found a study that compared the "steady state" amount of tamoxifen and the metabolite in your system taking 10 mg twice a day vs 20 mg once a day and showed the difference to be about 2% or 3% of the amount in your system.
https://www.accessdata.fda.gov/drugsatfda_docs/lab... This pdf on the name brand tamoxifen says "In a 3-month crossover steady-state bioavailability study with NOLVADEX 10 mg twice a day versus NOLVADEX 20 mg given once daily, NOLVADEX 20 mg taken once daily had similar bioavailability to NOLVADEX 10 mg taken twice a day"
So now that I have said that it would be OK to take twice a day, and while many take twice a day with good results, I found that I did better taking it at night immediately before bedtime.
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Long story, but the short version is:
Just over two weeks ago I decided to drop down to 10 mg / day. With skipping one pill, I was basically down to the full steady state of 10 mg / day of the drug in my system, but still a bit above that w/ the metabolite.
Last night I didn't take my pill. I thought I did and took other pills, but missed that one. I woke up this morning feeling better than I have since the day two weeks ago that I skipped a pill on purpose. I really thought I had taken it, so was crediting other things with feeling so good, but now I am sure (based on where bottle was and how I feel) that I skipped the pill.
I feel so much better today . . .
Need to decide if I stay at 10 mg and start taking effexor with it again or if I drop down a bit with or without effexor.
Tonight will do the 10 mg with 1/2 min dosage of effexor
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DorothyB thank you so much for your answer, much appreciated!
Before asking the oncologist, I also tried taking only 10mg for a few days, after having read on here about people doing that, and even missed a couple of days. I definitely started to feel my 'normal' self again. It's frustrating to know that quality of life is being messed up, and our true selves are in there somewhere! But I will take the pills, because I don't want to get cancer again.0 -
Worry the Pooh -> just want to clarify for you and others, that even if a patient takes Tamoxifen as rxd (for years or at 20mg doses or others) it is not a guarantee it will not come back. It lowers the risk by about 40% but there are still patients that have recurrences depsite taking the medications. Pretty sure you know this but just wanting to be sure. Would be amazing if it was a sure thing, 100% blocking it from ever coming back. We can sure hope some day that is a thing. Best of luck to all.
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WorryThePooh, as Spoonie rightly pointed out, if you take the 20 mg daily thinking this is buying you guaranteed protection ... you might be wishing on a star. I don't want my cancer to come back either. So I take tamoxifen. But I take 10 mg most days and 20 mg twice a week. Because that's what I decided I would do. For various reasons. I did not seek my oncs approval, blessing or permission. He is not the boss of me. He is hired to give me his best medical opinion. What I do with that opinion is entirely up to me.
For your own reassurance you might ask your oncologist on what he/she bases the adamant assertion that you must take 20 mg a day? Is this based on long term studies of 20 vs 10? If he says yes, this is based on long term studies, ask him to provide you the reference material so that you may investigate these studies yourself. He/she will not be able to direct you to this research. It does not exist. There is some very new research (in the last 15 or 20 years) in very tiny population samples dipping a toe into this topic. But overall 20mg was arrived at as the most 'tolerated' dose. Not the BEST dose. Just the dose most women could be convinced to stay on, despite the rather miserable side effects. (not that everyone gets them, some people sail through unscathed).My onc, god bless him, admitted instantly and openly that there is no evidence whatsoever showing that every woman MUST be on 20 mg a day because that research was never done. He is well studied, a snazzy dresser and has awesome hair. He stays current, is a man of few words and he knows his shit. And he said, to my face, there is absolutely no solid science backing 20 mg as the life saving dose. The truth is that we just don't know. Thus I feel my 10mg 5 days a week and 20mg two days a week is a reasonable middle solution that works for me. As a side note, even on mostly half a dose I have a whole raft of symptoms that are not all that fun. So there's enough of it in my system to give me hot flashes, thinning hair, killer leg cramps, stopped my periods dead in their tracks, skin has aged 10 years, weight gain around the middle, vagina that resembles the Sahara desert and a memory like a sieve... on HALF the protocol dose.
For me it was reading all the bios of women here who took tamoxifen and got cancer again anyway, while taking the damn tamoxifen. That cemented it for me. There is no magic bullet. Just bullets.
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Everything that runor said (well except the dosage, right now I'm on none as this drug leaves my system--I see my MO tomorrow to discuss).
Doctors are not our dictators, or the enforcers or anything else. They are highly educated and they will absolutely make strong recommendations based on their professional opinions (and lets be honest biases too). But at the end of the day MY health is MY responsibility. My doctor is part of my advisory team.
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Yes, I did a search to see how estrogen effects the brain and I was very surprised to learn the many things that it contributes to.
I think you may be right!
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Hello everyone,
I wanted to report a happy side effect. My skin has been breaking out to various degrees (some years severe acne) for years. Tamoxifen seems to have stopped the breakouts entirely. Also, my skin glows. People have been commenting that it looks fantastic. I had mood swings and insomnia early on but they seem to be better now.
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Thanks for all your thoughts on dosage, much appreciated!
Runor I also have definitely noticed weight gain around the middle.
I have decided to stick with 10mg twice a day, morning and night, and just see how I go. I am not 100% sure if I am imagining it, but I think I am tolerating it better split into two doses.
Thank you for making sure I knew it was not a guarantee, yes I know it's not buying me guaranteed protection. I don't know whether I am taking them for nothing, or taking 20 unnecessarily, but if nothing else, I feel a little reassured each time I take one of these darn pills, maybe I am fooling myself, but when standing on shaky ground, I look for something to cling to.0 -
WorrythePooh I'm actually taking 10 in the morning and 10 at night. I gradually worked up to 20 with the blessing of my MO and when I went to 20 all at once in 10 days the SEs were way worse then 10 in the morning and 10 at night. So I went back to AM/PM, my MO supports me and things are good. My warm flashes have even seemed to have disappeared. I did notice some joint pain but that might just be the weather changing, it only seemed to last a week. Good luck.
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Thanks Mymomsgirl, I am sticking with taking it morning and night too, I am sure my moods are better that way! I still get the hot flushes but not as often.
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I'm just passing through, but Runor, your comment, "So there's enough of it in my system to give me hot flashes, thinning hair, killer leg cramps, stopped my periods dead in their tracks, skin has aged 10 years, weight gain around the middle, vagina that resembles the Sahara desert and a memory like a sieve..." could just as well be about anastrazole, especially the "killer leg cramps." There is a feeling you get in knowing you are not alone, thank you. My skin has aged 10 years as well. I am 56 years old, and knew the grandma years were coming, so it is not as bad as it could be. Hugs, Lisa
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edj3 What did your MO say about the tamoxifen, as you mentioned above, an appointment with MO yesterday ? You are very correct in that we must take their words as educated opinions, not always as fact. Sometimes we have to go with our gut, with our body. Our body might know itself better than anyone else
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Jumping in after lurking for a few weeks. Started 20 mg daily this past Tuesday so have had 5 doses so far. I am taking it in the morning all at once and will see how I do. Right now I take everything else in the morning (except sometimes a melatonin at night), so decided that would be most convenient until I see how it effects me. So far, I note a mild headache much of the time. Otherwise, not too much, but obviously very early still! I was already perimenopausal before diagnosis, and having hot flashes (and take Effexor too as someone else mentioned), so am hoping that maybe it won't be quite as much of a shock to my system. We shall see.
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I have looked on this forum, but can't find any mentions of drug shortages. I went to refill my prescription of tamoxifen yesterday at Costco and was told they are all out, and won't be getting anymore for several months. Is this a Canadian thing??! I called three other pharmacies with no luck and finally found a three month supply at a little local pharmacy...but that is all they had. At least I'm good for the next few months, but found it hard to believe that there is a shortage! Anyone else have this problem
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Togethertolearn, my MO's PA saw me. She said (as we all know) that tamoxifen has a long half life and takes four to six weeks to fully leave the body. I'm still having heart rate issues and have just hit four weeks w/o the drug. She suggested getting a stress echocardiogram to rule out any heart issues and I think that's a good idea.
I've also noticed that my blood pressure is high (for me). I'm usually in the low 100s, below 110 over low to mid 60s. It's running 148/72 so a big difference. Increase in blood pressure is mentioned as a side effect from Prolia so that may be the source of these issues. Or who knows, maybe I all of a sudden developed heart issues practically overnight.
TLDR: still not taking tamoxifen, waiting on a call for that stress test, and hoping this isn't from the Prolia b/c THAT won't wear off until late February. Sheesh. All I want to do is go for a nice long run only my heart rate says otherwise.
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Lucysbff, I just had a 3-month refill of Tamoxifen 10mg without any problems.
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Lucy, I ran into the same thing here in BC. I usually get 3 months at a time at the hospital pharmacy. This time they only gave me one month because there is a shortage. Lucky for me I split my pills in half so a 3 month supply lasts me almost 5 months (I take some of the pills whole so not all of them are split). Wonder when this Canadian shortage will end?
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Makes ME wonder what Canada knows that the US doesn't. I envy you your healthcare.
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I haven't had any problems (in the US, east coast). I did just read an article about the Canadian shortage and it said something about manufacturing delays with all the Canadian manufacturers, so who knows what's going on there. There was also a list of a bunch of other medication shortages in Canada. That must be really frustrating.
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Has anyone here been diagonosed with Poly-cystic Ovarian Syndrome and been on tamoxifen? I’m wondering how my already confused hormones will respond..
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mallokg I have mild Poly-cystic Ovarian Syndrome and have done fine with Tamoxifen. I have found I get really tired the day before my cycle and had a little ovary pain, but nothing really bad.
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Thanks,MyMomsgirl! I do worry about the already wonky hormones on any hormone related treatment!
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mallokg I have pcos and I haven't noticed tamoxifen causing it to be worse
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Hi all,
Nice to meet you in these horrible circumstances. It's been a month since my left breast MX. Things are slowly getting better. My MO has recommended Tamoxifen, but iam worried about side effects. What did you guys go through, iam 41 and don't want to start feeling menopausal symptoms. I already am always hot, and sweaty, and have low mood. This year has been so tough, and this month just feels like a blur.
Any help or insight would be much appreciated.
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