Bottle o Tamoxifen
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Nancy, I completely sympathize with your position. If your SEs all come back and you're tempted to just say "No more" I'd support you in that as we all have our own journeys. But before you do, I'll just second what Runor said as well, since my MO told me the same as well, "Some tamoxifen is better than none.".
This is the info regarding the half-life (time it takes for all of the med to exit the system) for Tamoxifen metabolites:
https://www.accessdata.fda.gov/drugsatfda_docs/label/1998/17970.pdf
So given this information, if I understand the facts correctly, if a patient is taking 20 mgs daily (whether 2 10 mg tabs or 1 20 mgs) for at least 4 weeks, they could stop treatment and there would still be Tamoxifen in their system up until Day 14. Perhaps your MO could give you more info on taking a smaller dose less frequently? Again, IMO and my MO's, something is better than nothing. Wishing you the best on your journey.**Side note - I was surprised to read at this link, listings of many of the studies that have been done on Tamoxifen. I'll definitely be going back and reading over these as many of them I was not aware of.
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I completely agree with the 'less is better than none' theory - I went for my 3 month follow up with a NP this time, and she too would not waiver on less than 20mg of Tamoxifen. Ridiculous! It took some convincing to have her prescribe 10mg twice a day (So I could split the 10mg in half) So once again I shall start with 5mg on July 1st without the blessing of my MO. If I feel OK - then I'll work up to 10mg - but it's going to be MY Decision.
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rljes that may be the route I go if I do try tamoxifen.
If I understand the role diet & exercise play in reducing the risk of recurrence, then I'm getting a 40% drop right there. I'm low risk, not sure adding tamoxifen in there is worth it especially if it ends up curtailing the level of fitness I currently maintain.
But my MO was pretty definite about his preference that I take it.
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I think it's important to understand the position our doctors and oncologists come from and that might even change country to country. I do not think doctors here in Canada get sued at the rate ( or the assumed rate) that docs do in the U.S. So to a HUGE HUGE HUGE degree the medical advice your doctor gives you has a lot to do with keeping himself out of court and keep you from coming back and saying you got cancer again because your doc didn't make it clear that taking less tamoxifen left you at risk for recurrence and mets.
Just to be clear, UTTERLY clear, when I say that I take 10mg a day without my onc's blessings that also means I can never go back and cry that he didn't give me the correct advice. Anything that happens, that's on me. I own that. I step up and take full responsibility and cannot and will not sue anyone for my own, adult, free choice actions.
Having said that, does taking less tamoxifen leave you at increased risk for mets? As best I can determine, no one knows. No one knows how much we actually need. We get 20mg because that has been the standard. The standard is not the best. It's just what we do. Cause we don't know any better. It works. Sometimes making women utterly miserable and some women get mets anyway while they take their 20 mg a day so what is to be concluded by these opposite and not uncommon outcomes? Good question.
But I think if you are expecting or hoping your onc is going to give you the go-ahead to take less than the standard dose, you're barking up the wrong tree. At best, if you TELL him what you plan on doing he might argue or tell you that ultimately it's up to you. And it is. You're no prisoner. No one can force you. As such you can't run back and blame anyone. But docs have very little real guidance other than 'tradition' when it comes to tamoxifen dosing. THey stand on the side of caution and Do No Harm. In most cases you will not get support and will be blazing a path on your own.
For me, some is better than none. And that's where I'm aiming right now.
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Thanks Runor and Spoonie for the info.
I can tell you that it took 4 weeks to find total relief of the SEs when I stopped taking the tamoxifen. And I toyed with the idea of starting back with 10mg, but I wanted to find out if it really is the different manufacturer and not just any tamoxifen. So since I'm back on Mayne/Teva, I'm going to try and stick with it. It took 5 months for me to get the pain I could no longer tolerate. Whether it was the switch to a different manufacturer or just that long for tamoxifen to start bothering me is anyone's guess.
If the pain returns, I will go off of it again until the pain subsides and then try the 10mg. I could also do a lot better with diet (I have a terrible sweet tooth and carb craving) and exercise. I wear a fitbit and average 5000 steps a day, but I should be getting 10000. The only place I get that is Florida where I walk every morning around 2 miles. Here I go to yoga once a week. We live in a hilly area and my hips can't take the inclines. I know I need to force myself to walk every day at least a little bit.
My onc was fine with me not taking it at all if that's what I decided. So I can't imagine him objecting to taking half dose. I don't see him until November so I'll have lots of time and lots of things to try before then.
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This:
Just to be clear, UTTERLY clear, when I say that I take 10mg a day without my onc's blessings that also means I can never go back and cry that he didn't give me the correct advice. Anything that happens, that's on me. I own that. I step up and take full responsibility and cannot and will not sue anyone for my own, adult, free choice actions.
Is my position as well about any and all of my medical care. I look for my medical providers to partner with me, and I am not comfortable with those who prefer to dictate orders and move on. That doesn't make for a good partnership on either side.
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In my thinking, just the fact that tamox stays in your system for a whole MONTH after taking the last pill leads me to believe 20 mg is not neededto be effective. Based on that fact alone, and all the recent studies that have shown that 10 or even 5 mg is just as effective, I'm sticking with 10mg per day. No one will ever bother to study the lowest effective dose for invasive because tamox is so cheap and no one cares about women's quality of life. I'll bet if it were men, something would be done!
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One thing that struck me in the low dose studies is that some of them said the FIRST pill (or maybe first few) were 20 mg, to get a good amount of the drug into the system. After that initla full strength dose, they dropped back to 1 or 5 or whatever mgs.
I picture it like this. When I take the 20mg pill on Sunday, I see a tennis player serving the ball hard, BLAMMO. Then I take 10mg and 10mg for Monday and Tuesday. That's the two players just sort of bouncing the ball back and forth, playful like. Then on Wednesday I take 20mg, BLAM! the ball get served hard. Then a few more days of easy play before another biggy.
THis is more like taking 3/4 dose than half. But the studies did start with a large dose and then backed off. I figure that is a good model to follow.
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Hi All,
For those it applies to (and perhaps nobody on this topic), you may be interested in taking a look at this research news we wrote up: Low-Dose Tamoxifen May Be an Option to Reduce Risk of Recurrence, Invasive Disease After NON-Invasive Breast Cancer.
An obvious reminder is to please consult your treatment team before making any changes. They will have the full picture of your unique situation and be able to guide you to the best decision for you.
The Mods
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I can't wait to read that article....thank you Moderators!
I just discovered after looking at my massive collection of medications I've tried, that I HAVE been taking Mayne(Teva) since April....there wasn't a manufacture change as I thought. Mayne distributes the Teva now, I guess. So, that means all the pain I had for a month will probably return since I started taking it again. I'm not going to assume anything. But I'm going to read that article and if there is even the slightest indication that a lower dose than 20mg is effective, I'm going to start cutting pills in half. As people have said...some tamoxifen is better than none.
UPDATE: Eh...just started reading. And this low dose is for women who have had NON invasive breast cancer...DCIS and 2 others that are limited to the milk ducts. So...that's not me. :-(
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I'm reading an article about low dose (not the one posted by the mods) and it says blah, blah, blah tamoxifen is not universally effective among women, some having more benefit and some having little to no benefit..blah, blah, blah.
Uh...wait a minute. Are you telling me that my oncologist happily placed a bottle of tamoxifen in my hands and sent me on my merry way with NO CLUE WHATSOEVER if my body even metabolizes this drug effectively? So, even at my self administered low dose I may still be placing myself at the very real harm associated with tamox while having no clue whatsoever if I am gaining any benefit at all? So, is it correct to say that my Oncoscore might be a whole lot of phooey if no one tested how well my body metabolizes tamoxifen? Isn't that like pushing someone out a plane and telling them the parachute will save them, as long as it's not the one with the holes in it. Well thanks a loooo
oooooo
ooooottt! (splat)
I don't know. Maybe Oncotype does test for efficiency of metabolizing tamox? Maybe my report card should have said, happy news, you are a whiz bang expert at tamoxifen metabolizing. OR it should have said, too bad for you, you suck at algebra AND tamox metabolization.
So they are sending us all out to take a drug and really, they have no stinking clue if it's even going to do us a lick of good since it is not UNIVERSALLLY EFFECTIVE!!! This calls for alcohol.
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Is there any drug or treatment that is universally effective?
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I agree that it's frustrating and disturbing, Runor. When I learned the fact that you speak of, I specifically asked both of my MOs last Fall for the test that shows if I am a decent metabolizer of Tamoxifen and was denied by both doctors. They say there isn't enough evidence yet supporting the CYP2D6 test. I think it's a bunch of hooey and was, IMO, rightfully gobsmacked. But like the rest of us, I said "ok" and thought "Something is better than nothing. <fingers crossed my body is actually using it>" Ugggh.
Metabolism and transport of tamoxifen in relation to its effectiveness: new perspectives on an ongoing controversy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4319217/
"Abstract:
Tamoxifen reduces the rate of breast cancer recurrence by approximately a half. Tamoxifen is metabolized to more active metabolites by enzymes encoded by polymorphic genes, including cytochrome P450 2D6 (CYP2D6). Tamoxifen is a substrate for ATP-binding cassette transporter proteins. We review tamoxifen's clinical pharmacology and use meta-analyses to evaluate the clinical epidemiology studies conducted to date on the association between CYP2D6 inhibition and tamoxifen effectiveness. Our findings indicate that the effect of both drug-induced and/or gene-induced inhibition of CYP2D6 activity is likely to be null or small, or at most moderate in subjects carrying two reduced function alleles. Future research should examine the effect of polymorphisms in genes encoding enzymes in tamoxifen's complete metabolic pathway, should comprehensively evaluate other biomarkers that affect tamoxifen effectiveness, such as the transport enzymes, and focus on subgroups of patients, such as premenopausal breast cancer patients, for whom tamoxifen is the only guideline endocrine therapy."
Tamoxifen Therapy and CYP2D6 Genotype
https://www.ncbi.nlm.nih.gov/books/NBK247013/
"The CYP2D6 enzyme metabolizes a quarter of all prescribed drugs and is one of the main enzymes involved in converting tamoxifen into its major active metabolite, endoxifen. Genetic variation in the CYP2D6 gene may lead to increased ("ultrarapid metabolizer"), decreased ("intermediate metabolizer"), or absent ("poor metabolizer") enzyme activity. Individuals who are intermediate or poor metabolizers may have reduced plasma concentrations of endoxifen and benefit less from tamoxifen therapy.
At this time, the FDA-approved drug label for tamoxifen does not discuss genetic testing for CYP2D6 (Table 1) (1). The National Comprehensive Cancer Network (NCCN) Breast Cancer Panel does not recommend CYP2D6 testing as a tool to determine the optimal adjuvant endocrine strategy (Table 2), and this recommendation is consistent with the 2010 update of the American Society of Clinical Oncology (ASCO) Guidelines (the most recent update, 2014, does not discuss pharmacogenetic testing) (2, 3).
The Clinical Pharmacogenetics Implementation Consortium (CPIC) recently published updated guidelines for the dosing of tamoxifen based on CYP2D6 phenotype, with therapeutic recommendations for each metabolizer phenotype (Table 3). For CYP2D6 poor metabolizers, CPIC recommends using an alternative hormonal therapy, such as an aromatase inhibitor for postmenopausal women; or an aromatase inhibitor along with ovarian function suppression in premenopausal women. This recommendation is based on these approaches being superior to tamoxifen regardless of CYP2D6 genotype, and the knowledge that CYP2D6 poor metabolizers who switched from tamoxifen to anastrozole do not have an increased risk of recurrence. The CPIC recommendation also states that higher dose tamoxifen (40 mg/day) can be considered if there are contraindications to aromatase inhibitor therapy; however, the increased endoxifen concentration among CYP2D6 poor metabolizers treated with a higher tamoxifen dose does not typically reach the level as in normal metabolizers (4)."
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I'm collecting questions for my MO, mostly because I do much much better when I know what's going on and why the recommended plan is the plan. And no, the implied "that's the way it is" isn't good enough.
TBH I'm struggling with my Mammaprint results. Based on everything every one of my care team doctors told me, this cancer was No Big Deal, teeny tiny, hardly worth mentioning, great prognosis blah blah blah. So yeah I fully expected to be in the ultra low risk category. No, low risk isn't bad, I know that. But I would very much like to know what pushed me not only out of ultra low risk but closer to high risk on that blasted scale.
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I did take the genetic test for CYP2D6 (OneOme), provided by my MO, and found out I was an intermediate metabolizer for Tamoxifen. So my hopes of maybe taking less (I so wanted to try and go down to 10 mg) probably won't happen. My MO for sure wants me to be very careful and contact her if there are any supplements I am interested in taking that could reduce the T efficacy further. So who knows if the test really tells us. When I researched, results were all over the place.
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Runor, I'm LOLing here, even though what you report is not a laughing matter.
I'm thinking it's not just tamoxifen that they don't know whether it is universally effective. Probably lots of drugs. They only go by the probably minimal blind testing and if X number of people get the predicted results, the drug is claimed to be THE drug to be universally used for X condition. We all know that people react differently to a drug. Look at all the possible side effects listed when you pick up your next prescription. Some people get one or two or all of them while others get none. Now if they'd just tell you the percentage of universal effectiveness....
I'm not as eloquent or amusing as Runor and it's hard for me to put thoughts into words, I hope you get what I'm trying to say.
On a side note, I'm not even a week back on the tamoxifen and I spent a horrible night last night with pain in my legs and waking up many times. Fitbit says I was only awake a total of 42 minutes. Lies! Cutting my pill in half today....
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Hi, an update on my starting up with a low dose regime..to re-cap, after 3 years on Arimidex and 20% loss of bone density!!! My MO said Arimidex failed me, I got a 3 month break and then he started me on tamox, 10mg. I cited the new studies of 5mg as I am DCIS...and given the bad SEs of Arimidex started off slowly.
Two weeks 5mg every other day, 2 weeks 5mg every day. When I made my pills up for this week I was going to decide if I would up it to 5 somedays 10 others...but I am already having minor SEs (vag discharge) so will stay at 5 for a couple more weeks. Current SEs are within reason, but it appears to me that this low dose is being acknowledged by my system so maybe that is enough.
My next stage up was going to be 5mg/10mg every other day...but as I said, I plan to wait at least two more weeks before increasing from 5mg a day.
After a cool week or so, summer has slammed back into town...already 90! Happy Monday, TT
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seems to me the more that is left in your system the longer the linger time.
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Elephant, I don't know about universal effectiveness of any drugs. That is actually a good question and a HUGE one!
Rah, this comes from my unscientific and somewhat gin soaked mind. If you are waterproof, it doesn't matter if someone dribbles a teaspoon over your head or turns a fire hydrant on you. Waterproof is waterproof. If you do not metabolize tamoxifen, you do not get more benefit from taking more of it. It's not a bettering ram - at least I don't think it is. Maybe it's like vitamin C in that your body will only absorb as much as it's going to absorb and the un-used amount of vitamin C is just peed out. (if you have bladder infections take more than the suggested dose of vitamin C, it ends up in your bladder making an acidic environment that is hostile to germs, I did this for years on the advice of my doc). I may be thinking wrong but if you are a poor metabolizer, MORE tamoxifen in your body is just wasted and does not change your body's ability to make use of the drug.
Nancy, fitbits can tell you how much sleep you get? Really? Tell me more about this. I need to know.
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I'm not Nancy but yes FitBits can track sleep. So do Garmins. It's been interesting to see how my sleep's been the last couple of months to be sure.
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motiv fitness rings track my sleep and resting bpm too. Love it!
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Edj3 and Scrafgal, maybe you can tell me more about this. Hub is having an issue. He claims he isn't sleeping. Says he's tired all the time. Drags around here like he's half dead. Moaning and staggering as he weaves his way unsteadily to bed. He was tested for sleep apnea and wow, surprise of surprises, he had sleep apnea and they charged him $250 for a month trial of a machine. IT was like sleeping with Darth Vader. He hated it and every night tore it off after 3 or 4 hours. I maintain that he does NOT have sleep apnea. He has NONE of the markers or symptoms. All he does is complain, CONSTANTLY that he's tired. I wonder if wearing a fitbit could show him that's he's actually sleeping more than he thinks? Or sleeping less than I think? I did not know fitbits had this capability.
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runor
I literally call my sister Darth Vader everytime we vacation and sleep in the same hotel room, after she puts on that machine! I know that sound well!
If you are really interested in the sleep functionality, I actually got better sleep info on a cheap Fitbit knockoff called Very Fit Pro. It is less fancy than a Fitbit but it got the job done for about $20!
Beyond steps and calories, it tracked hours of sleep, times that you woke up in the middle of the night, deep sleep vs. light sleep..it was quite amazing, and I only bought it for the step tracking! I didn't want to spend much until I knew that I would like a fitness tracker. All of the info was stored in the app.
I still use that Very Fit Pro device, along with my Motiv ring...sometimes I just don't want to wear a watch. I've used both together and I actually think that the VeryFitPro is more accurate on steps. The Motiv ring tracks total sleep hours, restless hours and resting heart rate. I bought it for the fitness tracking more than sleep tracking so that basic info works for me. The Motiv ring cost just under $200, uses an app and had a lot more detailed functionality than the Very Fit Pro.
I have a friend who is a doctor who always reminds me that these devices are not NASA-accurate but they they are pretty good even if flawed. I'm not launching a rocket or training for the Olympics!
Fitbit likely has a lot of options for sleep and fitness, at various prices, but I never got around to it!
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So sleep apnea can be pretty serious. If that machine didn't work for him, I know there are other types. My dad had to go through a couple to find one that worked for him (hmm sounds like various manufacturers of tamoxifen . . . ).
I started with a Fitbit years ago for the fitness side and found the sleep information helpful. The biggest side effect of menopause for me was insomnia and I didn't believe how bad my sleep was until I started tracking. I mean I knew, but had a hard time wrapping my head around it.
A couple of years ago, I wanted more fitness features so moved to Garmin. As Scrafgal said, you'll see deep, REM, and light sleep plus the times you were either restless enough to read as awake or were actually awake.
FitBits have come down a lot on price. I got my folks each one for Christmas, think they were about $100 a piece. The Garmin devices are more expensive but they track so many different activities in a lot of different ways. For me, the Garmin made sense.
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Goid morning everyone,
I have been on Tamoxifen for 16 months. I have consistently had hot flashes and night sweats. I have also had some difficulties with word finding and attention issues, but those problems have gotten better. In the past month I have developed hip pain, both sides, and I get a pain in my left thigh bone. I am 54 but look about 90 when I stand up to walk! After a few steps i am better but it looks crazy! Anyone else having these issues?
I told my MO's NP about the thigh pain and she recommended magnesium. I wasn't thinking the hip pain was related because I have been walking a lot lately but now I think it is related to the thigh bone pain. I started the magnesium Sunday night. Any recommendations are welcomed!
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Lewhy I do have hot flashes as well like most ladies. I do have pain in my hips that comes and goes. What works for me is occasional acupuncture. The relief from the treatment seems to last for several weeks. It might be worth trying. I even used a groupon. Thanks for the magnesium comment.. I will go back to taking that for my thigh pain as well..
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Scrafgal, thank you! I have made a note on that Very Fit Pro. Hub would not use it for anything else - he moves around all day long on a 12 hour shift, he really doesn't need to count his steps. I bet I can buy one online. Sounds like it would give us smeo useful information and tell us how much he actually sleeps.
Edj3, I agree sleep apnea is serious and I know people who have it. My dad did. He used to snore like a freight train, then quit breathing, then do this huge gasp, choke, wake up, go back to sleep, repeat all night long. Hub DOES NOT do that. Does not snore, does not gasp, does not wake up, is not overweight. When we returned the apnea rental they man looked over the collected data and said to Hub, well you're getting more sleep than you think WHICH IS EXACTLY WHAT I HAVE BEEN SAYING. But it's like he's fixated on this being tired thing and he can't let it go. We ALL feel tired. Hell, be a mom to small children to know what tired is!! I think there are other issues going on - in fact I KNOW it. But trying to convince him of that is like trying to pull teeth. In my loving, supportive style, after listening to him moan on about how tired he was and how he had to get to bed early, and please understand that he has been yakking on about this relentlessly for over a year, while doing NOTHING about it other than the most obvious and easy (sleep apnea, he wants a machine to fix his problems rather than address issues that might require personal effort and change) I told him that if he mentioned how tired he was one more time I was going to punch him in the throat. He never brings up cancer, never ask how I"m doing mentally, never asks about the lymphedema that aches like an SOB, never asks how tamoxifen is making me feel, sure never did any investigating into how 5 years of this med might affect the dynamics in our marriage, emotional and sexual. No. That never comes up. Because he's too busy howling and bitching about needing more sleep, woke up 3 times last night, almost couldn't make it through the work day blah, blah, blah. I am feeling a little less than charitable right now.
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Runor your husband only woke up 3 times a night and he's bitching. LOL. That would be a full night's sleep for me.
I like my Fitbit Alta HR. It's small, has changeable wristbands to match different outfits and gives me the info I need. I think it was $150 but I'm pretty sure the price has gone down because they've come out with new models.
I've been taking magnesium for a long time. Either it doesn't work well or the pain I'd have if I weren't taking it would be terrible.
On a side note, I forgot to take my tamoxifen yesterday, do essentially I've been taking it every other day. No pain last night. No pain today. But I also haven't done much today except go to yoga. Took a whole dose today. Will be interesting how I feel tonight.
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That sounds really frustrating, and I cannot begin to imagine how you don't just blow a gasket. For real.
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Edj, oh I do blow gaskets. All the time. Loudly.
His problem, as he sees it, is that he falls asleep easily but after a few hours wakes up and can't get back to sleep. I think his perception of this is screwed up. We all wake up in the night. But if he wakes up he immediately freaks out that oh no, he's awake, now he's never going to go back to sleep, he's going to be tired at work, oh it's so terrible being tired at work, quick, go back to sleep., what time is it anyway? (checking clock) oh my god I've only had this much sleep, it's not enough! What he needs to do is wake me up when he wakes up so that I may bash him over the head with a brick, thus aiding him to rest comfortably for a while longer. Because I love him. So much.
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