Men and Tamoxifen

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

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.

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.

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.

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

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.

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.

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.

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

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

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.

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.

I've been on Tamoxifen for a month now (taken after dinner) with no side effects. Hoping this continues obviously.

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.

Good luck with your treatment Jim. Be sure to keep posting your questions here.