Are lower doses of Tamoxifen just as effective?
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I posted in April of 2011 and thought I might update my experience. I remained on 10 mg. tamoxifen for the last 4 and 1/2 years and only just recently quit taking it; I was 6 months shy of 5 years. So far all breast MRIs have been normal but then I know better than to count on this being how it will always turn out, however fingers and toes crossed that breast cancer won't return. Since I quit tamoxifen (July 17, 2014) life has been easier for me. My focus is better, hardly any leg/foot cramps at night, fatigue has lifted, hip/knee pain is much much better, can't say I've lost weight but I didn't put on more than 5 lbs when I started the T, only a few hot flashes, and my hair is growing faster......weird. Hope all who are contemplating changing to low dose tamoxifen run it by their onc first. I did tell my onc that if I could just have a year off it, I would be willing to go back on for two or three more years. Perhaps we will see if I really meant that statement. Sending good thoughts, Barbara
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Interesting thread! I am 67 and have been on Tamoxifen for about 3-1/2 months. I had a small lump removed which contained DCIS and several small areas of atypical cells removed; this took place in December 2012, followed by 6 weeks of radiation. My oncologist discussed Tamoxifen with me and seemed to agree with my decision not to take it in light of the side effects of Tamoxifen. Then just a little over a year later, a very small lump was found in my other breast; it was removed and there was a very small amount of DCIS. So I told my oncologist I would take Tamoxifen this time. I got my radiation in 4 weeks instead of six, and began taking Tamoxifen a little while later. Unfortunately by the time I began having side effects, my oncologist had retired! I have an appointment in a couple days with another oncologist my HMO has assigned to me. I plan to ask him about taking a lower dose, or maybe the "full" dose for a year and then see if I feel any different about it.
I have been having a terrible time with hot flashes--in the middle of record heat waves where I live! I also had some leg cramps for a while. And my hair seems to be thinning a lot. But the worst is mental fog, lack of focus, generally feeling dumbed down. I've read Tamoxifen can cause cognitive impairment. I'm sure the lack of sleep doesn't help, either.
I went through menopause a couple of decades ago, so I wonder if I have much estrogen that needs to be blocked anyway.
I think I'd enjoy the next 5 years of my retirement life a lot more without these side effects. My HMO generally conservative, that is, follows the most generally accepted treatment standards, but I'll let you know if my new oncologist gives me anything to add to this discussion.
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Update--my visit didn't result in anything very specific, unfortunately. I had another issue that had to be attended to (the healing of an incision for skin cancer) and a lot of time was spent on that. Anyway, the new doctor did not seem to know of any good lower-dose studies, but he told me that I might have side effects even on a lower dose. He also said that women who have the most trouble with side effects seem to get the most benefit from Tamoxifen. He also said I might get used to it. The plan is that I will stay on it until my next regular checkup with him which will be in March. He said that if I decided I did not want to continue taking it, then with careful monitoring, any recurrence could be removed.0 -
I had just as many SE on the lower dose, FYI
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I'm sorry to hear that.My doctor and I kind of joked about the timing of my starting Tamoxifen during a heat wave and water shortage.
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I am responding so this can go on my favorite topics.
I take 10mg - I have not been able to make it to 20mg due to the side effects.....
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pebee, In case you didn't know, a thread can be added to your favorite topics without having to comment on it.
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gentianviolet, wenweb, mss, and all: I am reading your posts
with interest. How many of you on Tamoxifen were put on post-menopause? My MO,
who I saw just once before rad treatment, and who I will see following in
several weeks, presented Tamoxifen and Anastrozole as my choices. He also
submitted that I may need only five years vs. the ten they are now prescribing.Someone on one of these threads mentioned the progressive decrease in
estrogen levels as we age anyway. This makes me wonder why or if ten years is
the standard for post-menopausal women as well, or if anyone has ever
considered decreasing the dosage over time for this group of women for that
reason, especially if side effects are less.I'm sorry to hear that you did not experience a decrease in SE with the
lowered dose of Tam, wenweb. Again, I don't remember where I read it, but
someone mentioned that a consult w/ her general yielded the comment that
weighing quality of life with a broken hip (resulting from weakened bones and a
fall) must be considered alongside the possibility of a recurrence of
cancer.Any thoughts?
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At 67, I am about 20 years post-menopause. My bones are thin already--I tried one of the meds for that a long time ago and had problems with g.i. side effects and then heard and read that some scientists/doctors believe it may lead to other bone problems. So now I have osteoporosis. My original medical oncologist told me that because of that, Tamoxifen was a better choice for me. I believe he said I would take it for 5 years.
At my visit with my new oncologist last week, I questioned how much estrogen I have that needs blocking so long after menopause. He assured me I have plenty.
I am a little overweight--reached my all-time high this spring--so one of my personal incentives to lose some weight is that fat is a source of estrogen.
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Mortmain - I was 69 when diagnosed and put on Arimidex. I never had any significant se's until the third month and by month 6 I told my onc that I wanted off of it. He put me on Tamoxifen and started me at the 20 mg dose. I stayed on it for several weeks and when issues from Arimidex didn't totally resolve on the changed medication (however they did lessen), and new ones from Tamoxifen arose........I decided to just take half a dose. Maybe not a smart move, but only time will tell. So, yes, I was post-menopausal by about 19 years. I quit Tamoxifen 2 months ago (and 6 months shy of 5 years) and have found that I am better, much better. Hips don't hurt anymore and knees are less achy. I still have tendonitis in my right ankle and right wrist. I don't think they have improved but it has only been two months and my hope is within a few more months, they too will resolve. Most of the other se's with Tamoxifen have also resolved. Sending good thoughts.
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I am pre-menopause and mistakenly thought they were no longer prescribing Tamoxifen for post menopausal women?? Anywho, I took Tamoxifen for 5 years 12 years ago and did not notice a ton of issues but now that I am older (42) and on my second round I have had several issues including ovarian cysts and last month I had a cervical polyp removed found during a routine exam (one of the top causes of these per Mayo Clinic is Tamoxifen). As I had a double mastectomy this time around I have mixed feelings about whether Tamoxifen is as beneficial/medically necessary at this point. I know there is a minimal risk of breast cancer returning at distant sites or back in the breast area but I have not been able to determine if this risk is worth some of these side effects. So as a balance for now I just take 10 mg per day instead of 20 mg.
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I see it has been a while since anyone posted on this thread.
I am soon to begin radiation after which I will take tamoxifen for 5 years. Being a skeptic by nature I have tried to determine why 5 years? Why is 5 the magic number? Does 5 have an overall lifetime benefit? Or is it the number most studies run for so they need 5 years to study you? I have not foud the definitive answer why 5 is better than 2 or 3. And 10?! This makes me think that postponing cancer is being called curing it. 10 years of medication is just nuts.
I am not happy about living a life where I feel crappy all the time. True, I might not have any problems. Or I might. But if I do I would like to have solid information on effects of reduced dose or shorter times than 5 years.
I think often our docs leave med school and get to work paying off student loans and doing what the books told them to do, so keeping current with new medical thinking is dependent on the peronality of your doctor. Some want to know more and do better and some think they know it all and that's good enough. Not every doc is workiing to know what's new, currrent, on trial or in the works. Some do. Some don't.
When I look over the different bios of so many women and see that many had recurrences while taking tamoxifen I realize that it is false security to think this can save me from the vagaries of breast cancer. It is a gamble. It is NOT a sure thing. So, does strict adherence to 'the rules' mean that I am free and clear of any risk? No! Therefore I would be tempted to fudge things for better quality of life.
I will keep looking for more information on this topic. I think too many women quit completely (studies confirm this) and that drop- out rate has not been studied well enough and certainly not addressed. Like others have pointed out, cancer is a wildly profitable business and determing if we can get by with less is probably in no one's financial best interest, so why do it? If I feel rotten on the full dose I certainly will consider changing it.
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My MO told me last week that I should be on it for 10 years after radiation. She said I would never be considered cured but that I should take for the amount of time that a reaccuarance is most likley. That was my understanding anyway.0
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When I think that I will have to take a pill for 10 years, that just knocks the wind right out of me.
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Me too, however I'm thankful that it's an option. The alternative could be so much worse. It's all about perspective and I try to stay as positive as possible, as hard as that is sometimes.
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mortmain I am now in the shoes that you were in three years ago when you posted this. I am 1/4 of the way through my radiation and tolerating it pretty well so far but I am really conflicted about the Tamox or Arimidex that my mo wants me to take. For background I had an experimental surgery on my sacral spine 7 months ago and I am terrified of what these drugs will do to my bone and nerves. Because it was experimental no one really knows. I am JUST starting to feel good from the back surgery and don't want to compromise it in any way. t feels so good to finally be pain free that I don't want to go back to the way it was. I am wondering how you are doing with your Tamox now since it has been three years since this post...?
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I take Tamoxifen, and it is totally doable. I feel better than before I was diagnosed with breast cancer. I also had an oopherectomy/hysterectomy, my choice, and live everyday to its fullest. I do split does, 10mgs morning, 10mgs evening. I do not have bad side effects, and I was torn and scared like most to start taking it. If you have bone issues, that is what I would suggest.
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Many of us do not have side effects at all, so while you'll see a lot of women discussing side effects, I think just as many don't pipe in because they are side effect free. I am. I've been on Tamoxifen for over a year with absolutely no side effects. I think women prescribed Tamoxifen should at the very least give it a try for a few months and then decide. There is a good chance you won't have SE at all.
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I’m a bit late to the party but I too am taking a lower dose tamoxifen. I’m post meno and they wanted me on Letrozole but it sent me bonkers after three weeks!
Anyway been on it over two years and have rarely taken the full dose. There is so much out there and studies saying that 5mg is sufficient and has same effect. However these studies have been done on DCIS patients . There’s been no studies in invasive patients as it wouldn’t be ethical. BUT the evidence is out there. They have the empirical dose of 20mg because no one has bothered to see if lower dose works the same. It does! I take 10mg every other night and 5mg in between. Tamoxifen builds up and we don’t want that. I have had changes to my womb and now need a hysteroscopy to check it’s not cancer caused by tamox!! Womb changes are what tamox does. So I know that dose works for me!
I have really researched this and certainly wouldn’t take risks with survival as my older sister died of this disease (30 years ago). She took tamoxifen for two weeks and it made her nauseous ( was 40mg in those days) and they said don’t bother to take it then!!!
10mg and probably less works and many docs know this but it’s not protocol to say and they can’t offer it unless someone is thinking of stopping. Research was done in Brazil as many women can’t afford the higher price of higher dose so they had a reason to do the research. 10 mg works.
Italy’s Andrea Decensi has done recent work, the same. But it’s individual choice of course. I’m totally fed up as I have to have this womb biopsy because of the tamoxifen!!! I get all the side effects on a lower dose! And I don’t tell my oncologist as she’s a stickler and thinks I’m a weirdo because I question things! One day I will and long to see her face!!
One benefit I found is just had bone density done and it’s better than two years ago, Thanks tamoxifen. Wish we’d never met but hey, I can take you in small doses;))))
Good luck lovelies!!!!! Xoxo
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Sissy60, I am right with you in these questions. I wonder now if, after 5 years of tamox, there might not be some benefit in taking a 10 mg tab twice a week, or a 20 mg tab once a week? But I would need to understandt what a cancer cell does when it starts to divide and if the arrival of tamox on a newly dividing cancer would wipe it out anywhere in the body? Just in the breast? Would it even nuke a cancer cell by starving it? I have lots of questions and no answers. So maybe 10 years, but the last 5 years being very part time pills might work? I wish people knew more.
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