Men and Tamoxifen
Hello! I just had my last chemo tx on April 29th. Starting to feel somewhat normal again, just waiting for my hair to grow back. I am to start Tamoxifen now. I am just wondering if any of the men on here can share what there experience with taking it is/was? What kind of side effects did you have? Any information, etc. would be great!
Thanks!!
Comments
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Hi. I had to stop tamoxifen after a few months because it put me into a kind of fog. Men are much more likely to stop because of side effects than are women. (If I remember the study from several years ago, 24% of men had to stop versus 3% of women). But keep in mind that the majority of men still do well and I hope that holds true for you.
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Hello. I am sorry to learn you are in this boat with the rest of us. Here is my experience with tamoxifen: I have been taking tamoxifen for about 14 months now and do experience side effects. When I first started the drug I would wake up a couple of times a night with strong hot flashes ( or flushes). However, the frequency and severity of the flashes diminished over the months and I only experience them a few times a week now. I have become use to them. On the other hand, loss of libido is a side effect that I will not get use to. I expect to be taken off tamoxifen in about a year and I hope the libido will improve then. But I beleive research now is starting to point to longer term treatment with tamoxifen beyond 2 years. Good luck to you.
bird
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My primary side effects were night sweats and loss of libido. I took Tamoxifen for 5 years, which is the standard length of treatment.
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Hi,
I've been taking tamoxifen for about 2 years now and I have only one side effects: I wake up every night around 4-5 AM and have problem to continue sleeping until 7 AM. I'm starting to getting used to but at first, it was difficult for me to sleep 6 hours per night rather than 8.
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Thanks everyone for the replies! I am starting Tamoxifen on Sunday. I am hoping it goes well with not too many side effects.
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My husband is freaking about taking the Tamoxifen. Did any of you go through chemo first? He is having a really hard time with the side effects of the chemo and is getting completely discouraged.
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Haljen--I hate to hear your husband is excessively worrying about taking Tamoxifen. For many people, men included, it is a very effective drug for countering the unwanted effects of estrogen on breast cancer tissue that is carrying too many estrogen receptors. If he experiences side effects that are not tolerable for him, his doctor can then advise on the need to continue or not. I suspect that he will find the side effects much less of a problem than those he experienced with the chemo.
I understand that estrogen is beneficial in promoting healthy bones and that could turn out to be very important to your husband if the chemo has negatively affected his bones. The alternative class of drugs, aromatase inhibitors, does not help with bone health and some doctors strongly advise against their use in men for other reasons as well.
I recall my medical oncologist firmly insisting that I take an ant-estrogen drug for my ER+ male breast cancer. He like other doctors I have read believes the benefit from such drugs, like Tamoxifen, in staving off recurrence potentially is as large as chemo in some patients.
Best of luck to you and your husband--bird
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I went through chemo first. Tamoxifen was a breeze compared to chemo for me. The side effects of chemo are much much worse than those of tamoxifen.
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Thanks for the responses, I'm sure he will at least try it. He's half way through chemo.
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Hi
My husband had chemo first and is now into his 2 year of tamoxifen. His primary side effects are night sweats, loss of libido and water retention ( he struggles the most with the water rentention, his feet and ankles are almost always sollen) Of course every one is different.
Best wishes
Laura
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My husband started Tamoxifen today, we are hoping for a good result and few side effects. He was just diagnosed stage IV so no surgery or chemo for now. For those men that have experienced loss of libido, have the doctors been able to do anything to help with that?
Glad to have found the forum, hard to find much on male breast cancer.
Winnymac -
I have been on Tamoxifen for about 2 years. It looks like I am one of the lucky ones. I have not experienced any side effects. I am told that I have another 3 years before I will be off of it.
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I have been on Tamoxifen for seven months or so now. I really have had no noticeable side-effects. Like, the 1NippleBandit, I am among the lucky ones.
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My Dad took Tamoxifen for nearly 5 years and had very few side effects. I, on the other hand, took it for 6 months and had all sorts of crazy things going on! Maybe the guys just process it differently? In any case, it can be very effective so good luck to all.
Rose. -
I was told by my doc that medicine to boost testosterone will have an effect on the estrogen levels, so as long as I'm on the Tamoxifen, he didn't want to start rocking the boat.
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Just to add a bit to the discussion.
As you can see from below, I went through a double mastectomy, A-C-T chemo and was then prescribed Tamoxifen for up to ten years. I had no discernable side-effects, until April of this year, when I had a minor stroke.
The cause appears to be a combination of damage suffered in a major bicycle accident, in which I apparently damaged an artery in my neck, that occured thirty years ago (WTF?) and increased clotting factor from my use of Tamoxifen. My oncologist has stopped the Tamoxifen, pending a consultation with my neurologist.
The damage from the stroke was limited to a month-long loss of peripheral vision in my right eye and the loss of certain numbers from my memory - including my office phone number and my PIN.
This was rather frightening, but the long-term effects appear to be minor. My vision is back, I've relearned my phone number and had to get a new PIN, which I still remember.
I'll let you know if anything develops and what my oncologist decides is an appropriate response. -
Just wanted to weigh in on the tamoxifen thing. I know that some women who experience unwanted SEs from tamo have been able to switch to a different manufacturer of the med. Due to different companies using different fillers, this has decreased the SEs and they were able to remain on the tamo. Just something to think about for those who do have issues.
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I had chemo first then radiation then tamoxifen for 2 and a half years then my cancer re mast. in 3 new parts. now they block with arimidex , and lupron which now block both male and female harmones. No side effects from the tamoxifen. still waiting for it to kick in on the new drugs told it will not be pretty the lupron was given in a 3 month injection. 2 weeks ago should start feeling the effects in another 10 days.. hope alls well and this helps a little. Bryan Jackson
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My husband has been on Taxoxifen for about 8 mths..... sore muscles and achey joints and his hair growth slowed down, that is about it so far for side effects. -
I've been on Tamoxifen for 4.5 years. Wondering if anyone (men) have had any of the following, which I believe are side effects:
- numbness in your legs below the knees
- increase in vericose veins on your calves
- tightness and pain in the calves and fronts of the legs (shins). The legs tighten up after sitting a while and when sleeping. When you first get up and start to walk, very stiff and painful. This tends to get better a few minutes after walking
- knee pain (on the inner portion of the knee). throbbing, pulsating feeling.
I have a theory that tamoxifen is causing restricted blood flow in my legs causing these problems but cannot find enough corroborating evidence. These issues have gotten worse over time, especially in the last 9 months.
Any men out there with similiar symptoms?
Mike
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I could say that I have those symptoms as well, but I am in school and do not exercise much right now so it could be that. That is the hard thing about side effects that could be related to so many other things. Where is it really coming from?
I have not had any numbness that I can recall or varicose veins. But have had shin and calf pain and tenderness in the knees. -
Thanks for the quick response. My guess is that not exercising should not cause pain in the shins and calves. But you're right - who knows. I'm having some additional testing done and will report back in next week.
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I started my tamoxifen today. I ´m experimenting to take in the morning. I´m using Novaldex, my MO does not like the generic version of Tamoxifen. Can you tell when the first side effects started to appear after the first pill of Tamoxifen ?
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Here is my experience. My case is similar to yours except that I did not require any chemo or radiation treatment. Started taking Tamoxifen in July 2009 and ended in July 1014. Based on my situation, my oncologist determined I could stop taking it having done so for 5 years, but I will continue having annual blood work done for the next several years. Here are what I believe were my side effects:
- sense of numbness in both of my calves ( I am a frequent jogger). Started within a few months after starting taking Tamoxifen
- slight ringing in the ears. Started within a few months after starting taking Tamoxifen, but not 100% sure I can link this to Tamoxifen
- Weight gain. Put on about 18 pounds. This occurred at about the 4.5 year point. Strange, but I've been told sometimes side effects to any medication don't kick in for many years. I've now lost about 10 pounds of this.
- Slightly lowered sex drive, but not 100% sure I can link this to Tamoxifen (I am 52).
Note: My shin and calf pain reported above was attributed to a knee condition - a torn meniscus in my right knee. I had surgery on this in Feb 2014 and all the pain is now gone.
Hope this helps.
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After 2.5 years on tamoxifen the only side effect I've noticed is that my whiskers grow about half as fast as before. Hair on my head never came back as thick as it was before chemo, so I don't know if it's tamoxifen. It might be affecting my libido slightly but I'm 59 and slowing down a bit anyway--it hasn't been a problem.
My oncologist mentioned that new studies show an additional benefit to extending tamoxifen to 10 years. Not sure if I will--but at least I get it free. -
I've been on Tamoxifen for a month now (taken after dinner) with no side effects. Hoping this continues obviously.
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Good evening,
Am set to start taking Tamoxefin after I get a second opinion on Monday. ( 1-25-16 ).
Wanted to know what dosage others have been given.
My dosage is to be 20mg 1 time a day.
Thanks, Jim
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20mg once a day is the standard dose and I've never heard of anything different being prescribed.
I've been on the drug for over a year now and have absolutely no side effects. And I have not had a recurrence.
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Thank you,
Jim Breslin
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Good luck with your treatment Jim. Be sure to keep posting your questions here.
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