Tamoxifen: 10mg vs 20mg
Hi,
I hope you are all doing well and on the way to recovery or staying healthy!!
I have been taking Tamox for a year now, mostly 10mg/day. Is anyone on just 10mg/day? I tried to take 20mg and the SE were too much, I couldn't function at all. I read the results of studies of women taking 10mg were very similar of those taking 20 mg, but without some of the nasty SE...Can anyone share experiences taking both doses?
Paula
Comments
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I too started off with the 20 and the se were too much, especially the bone and joint pain. It was unbearable! At 10 the pain is managable. Good luck to you!
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Thank you KJ, I see we had similar diagnoses as well...
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Paula,
Did your doctor change you from the 20 mg to 10 mg?
I have read through searching that many who are being give 20 mg only need 10 or even 5 mg.
Catbird
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Hi Catbird,
No, my doctor didn't switch me I am going to see her next week, but I am afraid she will not be in agreement with lowering the dose. I couldn't find much online about tamox 10. I know that's the dose they give in Canada mostly.
Do you know of anyone who has been taking 10mg for years successfully?
PDLC
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I know I did see several studies on here where it said the 10 mg and even 5 mg was proven to work in lots of women. But where ....now....I haven't a clue. It made me think about switching on my own to the 10 mg. But I was chicken.
I did stop taking it once for about 2 weeks and se's went away. I then went back on a half pill 10mg for a week and then went back to 20 but 10 in the morning and 10 at night. And so far the se's aren't bad at all....nothing like when I took the 20 non-stop.
I've heard lots of the Tamoxitrainers say that if you take a little vacation from it....up to a month....it won't hurt you and will help the se's. And most of them had the blessings of their doctors to do it. I didn't.
) but felt better when I saw that many did.Maybe some of the women will see our conversation and give us some input.
Catbird
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Hi!
Anybody taking 10 or less with your doctor's blessing? Is there any updated evidence that 10 is okay?
thanks so much,
Chocolate Rocks!!
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I had my MO's blessing to take only 10mg. I've since gone back up to 20mg & doing OK. I think my dose was reduced because of my whining. Since I only weigh 105 pounds it kind of makes since that I might be able to get by with a lower dose. But maybe I need 15mg? I'd love it if some one could direct me to the studies on 10mg Tamoxifen usage.
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Thanks for your response. Good luck- it would be nice if there was data on 10mg.
thanks again.
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So glad I logged on today and saw this thread. I'm seeing my MO next week so will ask him about reducing the 20 mg dose, as I'm still having lots of SEs (since Nov/11). However I'm certainly not 105 pounds like coraleliz ...
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I'm glad I saw this too...on 20 mg's and having SE's. Going to ask about it as well. Been off of it entirely for the last two weeks for surgery yesterday and it's been wonderful. Can't imagine 5 years of it.
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Hi Ladies
I too am starting at 10mg Nice to find this thread of others only taking 10 mg Nice to hear others are doing the same. Thanks for this thread
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I have been looking for information related to dosing of tamoxifen, and so far, have been unable to find the original studies that may have compared 10 mg to 20 mg or 40 mg. I DID find info that suggests patients who metabolize tamoxifen quickly to the active form have better response to it, and increasing the dose from 20 to 40 for those who metabolize it slowly can increase the amount of active form. But that still doesn't completely answer my questions on how the heck did they come to the 20 mg dosage, and are there some in whom 10 mg is effective?
So what I DID find was info on how many women continued therapy - seems that a large number do not complete a full 5 years, 7days/week, 52 weeks/year, for 5 years!
http://www.ncbi.nlm.nih.gov/pubmed/22689091
Breast Cancer Res Treat. 2012 Jun 12. [Epub ahead of print]
Adherence to adjuvant hormonal therapy among breast cancer survivors in clinical practice: a systematic review.
Murphy CC, Bartholomew LK, Carpentier MY, Bluethmann SM, Vernon SW.Source
Center for Health Promotion and Prevention Research, The University of Texas School of Public Health, 7000 Fannin, Suite 2556B, Houston, TX, 77030, USA, caitlin.c.murphy@uth.tmc.edu.
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I asked about reducing my tamoxifen dosage when I went for my MO appointment but unfortunately it was a "training" doctor I saw first and that doctor dismissed the idea outright and didn't offer any help re: dealing with SEs. Then when I saw my MO, I forgot to ask about reducing the dose as I was upset and feeling hopeless.
My MO gave me a plan (and some hope back). I'm taking a trial separation from tamoxifen for 4-5 weeks to see which of my side effects are caused by it (vs. chemo and other things). If my quality of life improves significantly being off tamoxifen, we can look at other options then, such as ovarian suppression (or removal if I choose) and going on an aromatase inhibitor. My MO said being off tamoxifen for this trial period won't increase my cancer risk (and I'm ER+++/PR+++), as hormone therapy works over the longer term, which is why people are on it for so long.
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I am wondering about taking 10mg instead of 20mg. Hot flashes can be hourly at night, but it is summer. The a/c is blasting at work, people are wearing jackets, and I have hot flashes every half hour. Harder to be comfortable when cold and hot in bed at night, going back and forth with the covers. Is it weight related, the 10mg vs 20mg?
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Mopsy-The 10mg dose doesn't seem to have been studied. At least those of us who have looked, can't find any data. I'm one of the few that have been told by their MO to take 10mg. I'm a lightweight(in more ways than one). Don't know if I was heavier if 10mg would have been suggested. I actually went back to 20mg. My SEs have lessened, my most problematic is dizziness/lightheadedness, but even that's less
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Coraleliz, My biggest issue is now the dizziness, too - I feel like I am "listing" to the right when I walk sometimes. I'm not actually afraid of falling, but I feel a bit like I'm on a boat. Is this how you feel on it, too? I was diagnosed in 2/2011 also but I had a grade 3 cancer and am terrified of any symptom I get but I am 99% sure this dizziness is from the tamox. It started almost a month ago and I've been on tamoxifen about 5 months. My onc said the side effects are typically worse near the six month mark. I'm also tired a lot and have a burning scalp feeling sometimes in one spot on my scalp. I've read that others have that also - oh, and some joint and occasional back pain. I started out taking the tamox in the am, then switched to pm, then the dizziness started so I'm now taking it about 11 am and then 6 pm each day (10 mg each dose.)
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christina-My dizziness comes & goes. Sometimes when I open my eyes in the morning the wall moves & my eyes start blinking to stop it. When I lie down to go to sleep I often feel like I'm on a boat. Or I think we're having a mild earthquake. One time when I was swimming laps at the gym, it felt like I was in choppy ocean water(I was the only one in the pool,so the water was quite calm). I stopped & hung on to the lane line until it passed & then got out of the pool. It happened again when I was swimming. This time I held on to the side of the pool & the side of the building was moving. It too passed. I won't do any ocean swimming anymore. At about the 2 month mark my dizziness was the worst. I fell when hiking. I'm certain it's the Tamox. I currently take 20mg at dinner. Alcoholic beverages really make matters worse for me. Hope you symptoms lessen or resolve soon.
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Thanks so much, Coraleliz! That is very similar to what I experience - and it comes and goes, too. That is one reason I believe it is the tamoxifen and not something ominous.
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I started with 10mg for 2 weeks and went to 15mg with s/e's only for a few days after uping the dose. (Headaches, fuzzy fogy head), "no -life "feeling. I am doing well on 15mg and will up to 20mg when I feel like it, maybe a week or two.
Blessings to All!!
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I have been back and forth, started with 20 mg, took 10 for a while, stopped for 2 weeks and felt better, tried divided doses, and now I am back to 20 mg before bed. My SEs are worse now and I am seeing my MO tomorrow and am planning on the discussion again. How necessary is this, end what else can I do. Besides hot flashes, and slightly more depression lately ( I am normally a very upbeat person), and more joint stiffness, I am recently been getting feelings of anxiety with some heart palpitations. I have had more fatigue ever since this nastiness started and am seriously considering going off of the drug. Has anyone stopped after the first year? What happens? Do you feel better? Also I forgot to mention that I have gained a few pounds and no matter how little I eat, I can't drop it.
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Bump.
Has anyone come across a study or trial where 10mg. daily (vs. 20mg. daily) was used? (I am familiar with the 1mg/5mg/20mg study, but am asking specifically about 10mg a day?) Interested to see what turns up.
I've used both 10mg/day and 15 mg/day. While my doctor reminded me that the "standard" was 20mg., he basically said he would rather me take a lower dose than none at all.
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I have the OK from my MO to take 10mg or 15mg instead of 20mg. I took 10mg for a month(month #4). The only SE I noticed was less, was pelvic pain. I've been dealing with pelvic pain for years & I can deal with it. So, I went back to 20mg due to the lack of studies. My MO recently suggested I decrease my dose & I reminded him that I already tried that. He said that if I wanted to try again he could monitor serum(blood draw) tamoxifen levels as a gauge of determining if I might be getting enough. He said there were older studies on lower dose therapy. He said he didn't believe in one size fits all medicine & that many women probably don't need the full 20mg. Since I didn't really get relief from my SEs(dizziness being the worst) on the lower dose, I continue to take 20mg. I'm thinking about contacting him & having him direct me to the study(s) though. The study might just show "serum" levels instead of DFS that most of us are hoping to find.
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I have been debating cutting my 20mg in half. Have been on them since Jan 2013 and am already post menopausal and now its AMPLIFIED so much that I sweat (NOT perspire) more than I can stand. I finally found a study about 10 vs 20 in the UK which is fine by me. UK and Canada are miles ahead of the USA in many areas of BC.
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Thanks for posting that terrikoala. I may be developing some gyno problems 2 years into tamoxifen and was wondering about proposing going to 10mg to my MO at my upcoming appt.
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I have been taking 20mg for 11 months. MO pressing big time for switch to AI, which I do not want to do. To me there are severe bone issues to study for AIs. I am intrigued by idea of 10mg dose, though MO said NO to that idea awhile ago. My Tamox SEs have been hot flashes and gyn dryness and pain. Maybe taking 10mg over the summer would be OK, just because of the heat. I like the idea. Why not 9 mos at 20mg and 3 mos at 10mg?
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The articles mentioning reduced doses are quite old (ten years or so) and nothing further has been found regarding this. Could have something to do with patent...I don't know. Can anyone tell me if some of the symptoms abate after your body gets used to the drug?
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I have been on tamoxifen at 10 mg/day for 3 1/2 years. I have an MRI done every year and to date everything is okay. My onc was not thrilled with my decision however he did say that half a dose was better than none. Fingers crossed that this was not a stupid move on my part and hoping everyone finds what works for them. Good thoughts.
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What's lacking is DFS(disease free survial) studies. I believe 20mg is the dose usually prescribed in Canada & the UK. I actually have a MO that believes it's OK for me to take 10mg(or 15mg) & has suggested it to mitigate side effects. I only weigh 100lbs, so in my mind maybe I could get by with less. When I decreased my dose, my side effects didn't improve that much. Not being able to find studies telling me the DFS was the same or similar, went back up to 20mg. I figure no one really wants to study this old drug, no money in it, only available in generic....
My SEs have improved. I've completed 30% of my 5yrs(if I did the math right). I have the GYN issues(thickening uterine ling/polyps/weird bleeding). The dizziness & head spinning was the worst for me, along with the eye changes. Both those have quieted down. Hanging in there at the 20mg dose for now.
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I was taking 10mg (until I stopped all together) because like some of you, I weigh 95lbs. It makes sense that one would question why a 95-100lb person would need the same dose as someone who could weigh twice as much or more right?
I did eventually get the blessing of my onc who told me that studies were done on a 70% dose, but not on a 50% dose, and that is why they (the docs) can not technically prescribe 10mg. While I was on the 10mg, my main SE of hot flashes remained the same.
We are the ones living in our bodies and have to make quality of life decissions for ourselves, which for many of us involves the SE of a medication.
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The weight thing......... I read somewhere that overweight people may actually need a higher dose of Tamoxifen. Something about why overweight women are more likely to reoccur. Wish I could remember where I saw that. I didn't want to base my decision on weight alone. I opted out of chemo despite my positive nodes(grade 1 & oncotype score of 4). So I'm really trying hard to stay on this drug. My MO tells me there are other options. My fear is that they may be worse. Actually my SEs aren't that bad but this could change. Maybe I'll be back in a month or two cursing Tamoxifen.
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