Bottle o Tamoxifen
Comments
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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.
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Runor - agree that the new research is a little thin...
My plan is to do 5mg every other day for two weeks, then 5 daily for two weeks (I am getting 10mg pills, so it is just cutting them in half). After that, my understanding is that the drug has a half life of 48+ hrs, so if 5 a day is sustainable, I may stop cutting and do 10 every other day. I see the MO again in 2 months. TT
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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!
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keep us posted! Ive been on Arimidex for 18 mo and Im very close to osteoporosis. I feel like an old lady all my bones ache lately. Dr may switch me to tamoxifen if my dexa is worse.. I dont want to take the osteoporosis meds.
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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
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Hi Everyone, just wanted to chime in to ask a SE question. I’ve only been on a half dose of tamoxifen for about 3 weeks and in the past week have started to experience pelvic/bladder pressure, like a constant full feeling down there. Wondering if anyone else has had this? Also just had a TVU and 2cm cysts were found on both ovaries(never had a problem with cysts before), and my uterine lining is thickened to 12mm
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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.
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Hi All - I had a Hot FLash Freak out at my rheumatologist office yesterday. I was actually clawing at the window trying to get some fresh air. The RN just watched in amusement as I paced up and down the hallway. When finally my Hot Flash was over she took my BP and it was 80/64. "talk to your MO" all that was said.
I Stopped Tamoxifen thinking it was what was causing my sever fatigue - after 6 weeks out of my system, I am still exhausted. A trip to the ER to meet my Pulmonary Doctor found nothing after very thorough scans and labwork, since I have Pulmonary Fibrosis, thinking it was a lung issue.I have a few more Doctor Appts and things to do, then I will start up Tamoxifen again at 5mg. I have 1/2 bottle of 10 mg left - My MO refuses to give me 10mg again, so splitting it in quarters is impossible - like runor said. So cutting 20Mg in half and take every other day is probably what I will do. (and look for a new MO)
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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.
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I have finally noticed a pattern with my hot flashes, which occur mostly at night so I call them night sweats. I still get them in the day but the ones at night seem to be the worst. The pattern is movement. I'll be sleeping away, no hot flash, then I move and within seconds of adjusting position, BOOM, I"m sweating all over. It passes. I sleep. Not hotness. Then I re-adjust my position and BOOM another wave of heat. If I partly wake and doze off again without moving, I do not have a flash. It has taken over a year of night sweats to find this weird correlation. But now I know and expect that moving around in the bed or wrestling with a pillow will set me off.
Daytime flashes however have shown no such pattern and those shitty things just sneak up and bite you and melt your mascara and frizz your hair.
Current issue, aside from peeing being an emergency, are the leg cramps. They taunt me. Thigh twinges. LIttle grimaces of pain, like rumblings before an earthquake. Certain movements, for no reason, give little shots of clenching muscle that I know, just KNOW is going to blossom into a full scale spasm around 2 am which will wake me from a dead sleep into searing agony as I lurch out of bed screaming sweetmotherofjesus! Or worse, during a moment of marital intimacy as I arch my back, go stiff and shriek OH MY GOD and Hub stupidly nods his head and says, yeah, I'm that good, as I scream GET OFF, GET OFF, IT'S A LEG CRAMP YOU IDIOT and I hurl him to the side as if he weighs 20 pounds I go lumping off, pounding my thigh and gasping. Not romantic. Not even a little bit.
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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.
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PurpleCat, I also have PVC, which I call Personally Very Crappy, because that's how my heart wonkiness makes me feel. I had to wear one of those heart monitors for 24 hours (years ago) and the doc reviewed the findings with me and said, 'well, this might annoy the hell out of you but it isn't going to kill you'.
My heart does the fast pounding sometimes, but worse is the stopping. My heart skips beats. In those milliseconds of skipped beat, the world begins to fade. It's not dizzy. It's not shortness of breath. It's the very first stage of passing out and then WHUMP! a big, hard beat and hello! I"m back again. When my heart skips a beat or two every 15 - 30 beats, it is MADDENING! It will do that for hours until I want to whack myself on the chest with a frying pan while screaming GET YOUR SHIT TOGETHER IN THERE !!! I also have hearing loss in one ear with tinnitus and I hera a whooshing noise in my ear 24/7 with every heartbeat. I also hear it not beating. I often say the last thing I'll be aware of is the sound of silence in my ear as my heart stops and I wait for it to come back on line, only it doesn't and my last thought will be, Oh Shit !
Tamoxifen has not made this worse. I had this when I was a teenager. PVC does not affect me like a bad heart might. As you say I am not out of breath (well, age related yes, but not heart related) and I can work and get my heart rate up and not have chest pains or feel I'm going to keel over. In fact, the PVC bothers me way more when I'm at rest. Watching tv. Posting on BCO. When I am active I do not notice it. But I sure hate the fade to black that it brings over and over and over ... But I can't blame this on tamoxifen.
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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!!
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lala1 glad to hear you completed your five years and even though delayed, that a lot of your troublesome symptoms resolved. I look forward to hopefully getting to that day as well! Although I am still not sure if I will be staying on T for the duration. Depends on my next meeting in June with the MO.
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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?
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Ladyofthelake- yes, several of us on this thread suffer from chills/ cold flashes along with the hot flashes. Mine come before the hot flash.
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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.
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I'm with you runor!!
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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. 0 -
Runor I am in your club!
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Runor I know I am in your club as well!
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Hi All,
Runor - what a horrible feeling you must go thru. I have just a tinch of a skipped heart beat - nothing like you have, but I've had to smack myself in the chest to get me going (that I feel I need to do - probably don't need to) the whooshing in your ears must drive you crazy. I'm so sorry.
Ladyofthelake- my hot flashes/chills are so severe and violent I'm considering taking hormone pills again to stop the madness even tho I know it might coz recurrence. Its that bad. My MO said to wear layers. Ha. I see an OBGYN tomorrow. (hysterectomy 30 years ago) I've tried Effexor, Oxybutynin and Gabapentin which were no use. I've had this since I stopped taking hormone pills upon Dx. I am chilled to the bone, wear t-shirt, long sleeve shirt and jacket, 2 pair of socks and a hat. Hot Flash hits and I'm drenched - I strip, rinse and repeat all day/nite long. Its never ending. AND I'm NOT on Tamoxifen. I stopped, thinking it made it worse.
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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.
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I would be interested too. I ask the pharmacy about any risk while flying long flights (Canada to Japan) and she said no
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According to my information, there is a risk of clots with Tamoxifen. Clots are generally treatable. Nevertheless, when traveling any distance by car, I stop every 1.5 to 2 hours to get out and walk around a bit. I'm investigating compression stockings for an upcoming multi hour plane trip. I do believe in prevention...
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A lymph PT issued me arm compression sleeves to prevent swelling/lymphadema to be used when flying on my surgery side. Also, leg compression garments (thigh high) to use for flying when I had several seromas with fluid in my leg, these no longer have fluid. I never thought about wearing compression garments to prevent a blood clot. I wonder how compression would help. I do stand up/move around a lot anyways on planes due to my back problems. Getting ready for a long flight. I guess I'll email my doctor.
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rljes, those flashes seem pretty fierce. I am no doctor but sometimes problems with the thyroid can cause crazy temperature fluctuations. It might be worth it to have your thyroid checked. Hub is prone to wild swings in his blood sugar (hypoglycemia) and when he does not eat regularly (more like constantly it drives me INSANE when he wants to stop every project every hour and have something to eat, oh my god, how does he get anything done in a day!?) but as his blood glucose levels rise and fall he has clammy sweats or coldness. Although being cold after being sweaty is a pretty normal reaction since it's how the human body is meant to cool itself. But still, feels horrible. Plus stripping in public is frowned upon, unless you're at Walmart where apparently anything goes.
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2FUN BeavernTX AMLMOM I saw your posts about blood clots and flying. On long hauls I do get up every two hours and walk the plane.
I want to say I do wear a compression sleeve on my right arm where they took the lymph nodes for prevention of lymphedema while flying. I put it on 2 hours before and leave it on one hour after the flight. I have been doing this for almost 6 years. So far so good. I have never worn compression socks. Those sleeves should be covered by insurance and do come in pretty patterns. Just FYI and I do believe in prevention as well.
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Veeder, compression stockings help prevent blood clots by supporting the return flow of blood from your legs. A major factor in DVTs is stasis or slowing of the blood flow such as occurs when sitting with your legs hanging down for prolonged periods. One of the reasons airlines (at least some of them) are encouraging leg exercises while sitting in your seat. My doctor recommended medium strength ones and said she wears them when she does surgery.
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Your so funny runor! I've had my thyroid checked in the past, but will do again. thx!
I asked my MO about clots taking Tamoxifen. He said to watch for clots in legs. but nothing to worry about lungs and brain. My pulmonary Dr for lungs begs to differ. He said to be watchful for clots in lungs.
Went to OBGYN today for my out-of-control Hot Flashes and she is putting me on Gabapentin - which I've tried to take in the past for my neuropathy and had bad reactions - but I will try again. Plus she mentioned BELLADONNA. ????? She said it was an opioid - I never heard of it - thinking it was an Rx drug like Morphine. Googled it when I got home and its OTC. strange.
Anybody ever take it ???????
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