Bottle 'o Tamoxifen

Hi Spoonie77,

Thank you so much for sharing so much about what your experience has been like. I am so glad it has helped reduces so many of the pain you have been having. I hope it works the same for me it would be so nice to feel like a "normal ish" person again :-)

Since you have been doing acupuncture for a while now have you been able to get through a week with less pain before your next section? If you do get little blood spots from the needles do they heal up quickly like with in a day or two? I know that everyone has different health care plans but is your copay low?

Thanks for your help I appreciate it very much.

I hope you have a good week.

Went to MO today and now have an Rx for 10mg...plan to start every other day at 5mg for two weeks and see how the SEs go, then maybe 5 everyday...yikes! Had to stop Arimidex after 3 years due to horrible side effects...having had a 2.5 month rest, I am not looking forward to this, but feel I am a much better consumer than I was in 2016. Starting slow and if the SEs become too much, I'll stop.

Happy Monday to all. TT

Lezza, the thing about asking your ocn if you can go on half a dose is the answer YES or NO is going to be based on what kind of rule follower your onc is.

I am pretty convinced that there is no hard evidence anywhere that says we HAVE to take 20mg or the drug won't work. I looked everywhere for the information that said tamoxifen was given at different dosages and it was found that 20mg was needed to keep recurrence away. I invite you and anyone else to look for that information. It does not seem to be out there. What I did find was multiple references, short, fleeting and almost as an aside, that when this drug first was given to women in 60mg and 40 mg doses, they quit taking it. They felt so incredibly lousy that they said to hell with this shit and refused the tamoxifen. At 60 and 40mg there was an extremely high non-compliance rate so they lowered it to 20 in an attempt to get women to stay on the drug. But this IN NO WAY is the same as saying 20mg a day is the lowest effective dose. Those two things aren't even close to being the same thing!

Your onc is likely to tell you that you have to take the full 20mg dose. If he's a rule follower and a by-the-booker, that's what he's going to do. He has no evidence saying that 10mg is better or safer or just as effective. But he also has no evidence saying that it MUST be 20mg or it won't work. All he has is This Is The Way We've Always Done It and This Is What The Book Says To Do - so that's what we'll do.

I take 10mg on Monday, Tuesday, Thursday, Friday and Saturday. On Wednesday and Sunday I take a regular 20mg tab. This is not based on my onc's blessing. This is based on me not wanting to feel so lousy that I quit altogether. This was based on looking over this site and seeing that women who took tamox for 5 years or more could still get a recurrence (mets) and realizing that there was no guarantee with this disease. You can do everything right, you can have a really good prognosis, you can follow all the rules, take all the treatments and get cancer again anyway. So. I went rogue. I did the reading, I came to a life decision based on what I was and was not willing to do. I fully accept that if I get mets someone is going to point and say it's because I didn't take the full 20mg dose everyday. But of course that will be pure speculation and bullshit because NO ONE KNOWS how much tamoxifen anyone needs to keep a recurrence away. COnsidering that effective treatment dose is a mystery, but side effects are a reality, I made the decision to go with half a dose most of the time and hopefully not have many side effects. I have had a LOT of side effects, some of them quite miserable. BUt I am still taking the tamox and hope to continue until 2021.

Your oncologist's reply will depend on if he/ she is a rule follower or not. But he/she has been left unguided by a lack of research into effective dosage levels of tamoxifen.

TrmTab, I did find some information on trials with lower doses. But they were not very large, did not carry on for very long so while it looked good in the short term, the long term data does not exist for any firm conclusions. However, based on the information that research provided, I decided that I was okay with 10mg a day.

Rather than trying to split a pill into 4 small pieces to get 5mg a day, which will most likely smash the pill to smithereens, why not take a 10mg every other day? The point is to have a constant level of tamoxifen in the system. Tamoxifen stays in the system a long time. So a 10mg pill every other day should keep the levels of the drug at an acceptable level. At least that's the way my brain sees it. 10mg every other day might have the same systemic effect as 5 mg every day - although I cannot prove this one way or the other.

TT , I am thinking of stopping AIs after 2 years and trying Tamox. I will be curious to see how you do. I may be joining you soon!

mama oz,I am in the same boat

The sad part is that you can still get osteoporosis without the joint pain

I am also concerned about the risks of tamoxifen like stroke and blood clots

The gift just keeps giving

runor That's what I was thinking. Like taking the 10mg two days a week. Thanks for the explanation

MamaOz I don't see why you cannot he on Tamoxifen.. I was told I should go on Armidex because chemo put me into menopause. I refused and have been on Tamoxifen ever since, Yes, I have arthritis pain in my hands but not signs of osteoporosis. I would ask your md.

2FUN I would also suggest you ask for Tamoxifen. Age has nothing to do with what drug you need to take.

rljes what about asking your MO for 10 mg twice a day that would give you the 10mg pills. I actually started with 10mg each evening, went to 10mg in the morning and the evening then I started on 20mg in the evening. I actually found I was having more hot flashes taking the 20 at night so I went back to 10mg in the morning and 10mg in the evening and they dropped back off. I meet with my MO next week, but I think I'm planning on continuing with a morning and evening dose.

Runor, you made me laugh/groan in sympathy! Your leg cramp experiences match mine very closely, and although none of them have appeared at really inopportune times, it's occurred to me that they would be a serious mood-killer if they struck at the wrong moment. Have you ever tried magnesium? That seems to help mine, as they cleared up when I started taking it and have started up again now that I've dropped it to see if other troublesome symptoms clear up.

I've been combing the boards to see if anyone else has had trouble with heart palpitations on tamoxifen, and have found just enough anecdotes to be reassuring. I had palpitations/PVCs years ago during a time of high anxiety and they haven't been a problem since ... until the past several months, and especially the past couple of weeks for some reason. If it's anxiety again, I certainly am well aware of the cause of that. But it sounds like palpitations can go along with hot flashes for women going through normal menopause, so it makes sense that anything that seriously interferes with normal hormone balances could cause palpitations. I'm hoping it's just another side effect instead of something that should send me running to the ER immediately. Considering that it all feels very much like it did 5-6 years ago, and that I can breathe normally and take hour-long semi-brisk walks without collapse, I'm not too worried, but they are going to drive me crazy. As determined as I am to see this prescription through for the full five years, this is the first side effect that has me considering whether I might just rather risk a recurrence.

Not to be a kill joy here but for as far as the half life or whatever of Tamoxifen....I stopped my 5 years Feb 2018 and did not notice ANY difference for about 9 months!! At 9 months I dropped a pound. Wow! I'd been dieting and exercising like an idiot for the whole 5 years and couldn't drop an ounce. My MO was delighted only because I didn't actually gain too much weight....like 10 pounds when most of his patients gained 40! But that 1 pound has led to a 10 pound loss over the last 5 months without me changing a thing. And at 9 months my joints finally quit hurting. And at 9 months my hairdresser realized that the yellow tint that I had developed in my gray hair (been gray since 19 years old) was starting to grow out. And heart palpitations....pretty much gone at 9 months. Might get them just lightly when I have a hot flash but not near as bad as before. Oh and hot flashes....definite improvement around 9 months. I would even get nauseous with hot flashes and that's gone. Soooo......guess it's good news/bad news sort of thing. Everything got way better for me. It just took around 9 months for it happen!!

Hi Runor, Cardiac Monitor Tech here. PVC stands for premature ventricular contraction and we all do them from time to time, especially as we get older. It’s not exactly skipping a beat, rather the ventricles contract early and the contraction is not efficient enough to move any blood around the body. So there’s no pulse felt for that beat as it’s not strong enough. The strong beat you feel next is a normal heart beat, but it’s moving the excess blood that wasn’t pumped by the PVC , that’s why it feels more forceful. I noticed a few years ago I was doing more PVCs than normal and quit drinking coffee as caffeine can cause them. It definitely helped but still feel them occasionally.

Now, to the Tamoxifen issue. Does anyone else get chills and shivering after the hot flashes, or is it just me?

Ladyofthelake, thanks. I do know it's not called Personally Very Crappy, that's just my own take on it. I might have to cut out caffeine. But then I would have no reason to live.

I know that was just your personal name for it . Just trying to shed some light on what you're feeling. Whether to lose the PVCs or caffeine we all choose which battles we want to fight.

Runor I know I am in your club as well!

Any input re: blood clots or stroke? When I look at the research, it looks like risk of stroke or blood clots is pretty high, but no one ever talks about it.