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All TopicsForum: Male Breast Cancer → Topic: Men and Tamoxifen

Topic: Men and Tamoxifen

Forum: Male Breast Cancer — For men who have been diagnosed or are at high risk.

Posted on: Jun 4, 2011 02:59PM

usetheforce wrote:

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!!

Dx 11/17/2010, IDC, 3cm, Stage II, Grade 1, 0/17 nodes, ER+/PR-, HER2-
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Jan 25, 2016 03:58PM - edited Jan 25, 2016 04:03PM by Moderators

This Post was deleted by Moderators.
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Jan 25, 2016 04:01PM Moderators wrote:

Agree with Traveltext, we are glad you found this forum, and please feel free to post here any time!

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Jun 2, 2016 03:33AM Charles_Pelkey wrote:

20mg a day for the last four years. My oncologist is recommending that I remain on Tamoxifen for up to 10 years. I have had no noticable side-effects.

Charles F. Pelkey Dx 7/27/2011, IDC, 2cm, Stage IIB, Grade 3, 1/10 nodes, ER+/PR+, HER2- Surgery 8/4/2011 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Surgery 8/10/2011 Mastectomy: Left, Right Chemotherapy 9/8/2011 AC + T (Taxol) Hormonal Therapy 1/15/2012
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Jun 2, 2016 04:23AM Traveltext wrote:

20mg a day for the last 18 months. My oncologist is recommending that I remain on Tamoxifen for up to 10 years. I have had no noticable side-effects. Never felt better and NED.

NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Mar 8, 2017 11:06AM cliff wrote:

I havnt found any side effects from tamoxifen yet, coming up on one year now, markers still going down, bone scan shows hope too. side effects might be masked by all the other stuff I take, lots of diuretics, heart meds and such, but so far no big changes yet. the only problem I have is with the exgiva shot once a month to keep my bones from turning to silly putty, strange random pains from that. but if that's what it takes to kill this cancer, ok with me.

Dx 3/16/2016, IDC, Left, 1cm, Stage IV, metastasized to bone, 2/21 nodes, ER+/PR-, HER2- Surgery 4/1/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 8, 2017 04:38PM Traveltext wrote:

I've been on Tamox for over two years without side effects. Great that the exgiva is doing the job for you, too.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Mar 17, 2017 12:27PM cliff wrote:

just had a side effect show up, sweating at night, around alarm clock time. Maybe I was confusing it with the low glucose sweats and shakes of diabetes. but I started checking my glucose and it was high enough to rule that out.

Dx 3/16/2016, IDC, Left, 1cm, Stage IV, metastasized to bone, 2/21 nodes, ER+/PR-, HER2- Surgery 4/1/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 11, 2017 12:04PM froid89 wrote:

Had erectile dysfunction issue!

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May 11, 2017 12:43PM Traveltext wrote:

Froid89, how long have you been on the drug?


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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May 12, 2017 03:42AM - edited Oct 21, 2017 02:00PM by froid89

2 month and then quit. It was tough decision.

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Intracavernosal forskolin: role in management of vasculogenic impotence resistant to standard 3-agent pharmacotherapy.
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May 12, 2017 04:06AM Traveltext wrote:

Well,according to that survey, just 0.43% of men had ED after tamoxifen. In other words over 99%had no problems. Sorry that you were in such a minority.

NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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May 12, 2017 09:58AM froid89 wrote:

Hmm. May be there was some other reason of ED. I don't know.

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May 12, 2017 02:43PM Traveltext wrote:

have you recently finished treatment? Often, it takes a while to regain confidence and, certainly, get used to your new look before you feel sexy again. Then you could also try Viagra or Cialis to get you started. I honestly believe, though, that your sexual function will return to normal given time.

NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Jun 15, 2017 09:46PM - edited Jun 15, 2017 10:25PM by Widgit

Forum Members;

I'm new to the site but have been reading intermittently about breast cancer in men since I was diagnosed almost two years ago. I've been through surgery, chemo, and radiation and am now in my eighth month of Tamoxifen. The road has been rough (chemo was difficult with an uncontrollable neutropenic fever that landed me in the hospital for over a week; then neuropathy forced me to end chemo before I had done all twelve of my prescribed rounds) but things are improving in most ways. I do want to reach out, though, to see if others are having problems with Tamoxifen that I am experiencing (and I saw little mention of it in posts above); I acclimated fairly easily though I did find that I would burst into tears at least a dozen times a day -- not always sad tears! -- but that has abated somewhat.

My main concern is my WEIGHT! My health started to go downhill about four years ago and I went from being someone who spent at least two hours a day at the gym with a second exercise session most days added in to someone who can barely get up a few flights of steps without exertion. Now that I'm supposedly past the worst parts of my cancer journey I'm finding that the Tamoxifen is causing me to become increasingly plump/fat. I'm annoyed at friends who knew me when I was fit and athletic who now counsel me to eat less; I had a virus a few weeks ago and barely ate anything for two weeks and I still gained a pound. I'm up about 30 pounds over the past four years with most of it coming during the cancer ordeal. I do admit that my appetite is back and I'm ravenous but I've also resumed working out somewhat (though it's by my standards to a very limited degree) and yet I have to keep buying fat clothes.

I had been using testosterone/Androgel because chemo wiped out my testosterone; I was measuring basically nil (I think the last test I took before starting Androgel had my number at 22) but that really didn't help me to shed any weight or find renewed energy. Now I've had to stop using the Androgel because new findings have it that it may increase my odds of getting breast cancer again; I'm ER-positive and PR-positive and that combined with the use of testosterone is apparently considered a bad mix.

I am rambling and I apologize; when it gets late at night and I sit around in my boxer shorts that are t-i-g-h-t because my weight has gone up even more I seek refuge in on-line research. Is anyone else finding that the Tamoxifen has caused them to add a great deal of weight that does not solely come from sloth? I do have other health issues and I am in my mid-50's but when I work hard with my exercise regimen and eat carefully (I'm already a vegetarian but when being strict I push it toward veganism!) I STILL GAIN WEIGHT!!!

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Jun 16, 2017 12:03AM Traveltext wrote:

Hi Widgit, great to have you post here. Glad you made it through treatment, even if the chemo was rough. I've been on tamoxifen for nearly three years now without any side effects. My weight has remained stable. It sounds like your weight issues began before the cancer treatment, although I'm surprised that you didn't lose weight during chemo. I lost 8 kg. I guess our metabolisms are different.

I really wish I could offer some advice for you apart from weight loss tips which I'm sure you're very familiar with and even tired of hearing. Keep us posted here.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Jun 16, 2017 11:57AM Widgit wrote:

I DID think the one silver lining of chemo would be some weight loss but I was not nauseated for a moment during my rounds -- and the steroids would, of course, make me hungry for a few days right afterward. My oncologist said now many people don't lose weight because they've gotten so good at managing the side effects (which is, of course, a plus!). Yes, when my health started to go I did put on some unusual pounds but chemo and tamoxifen have seemed to stop my metabolism completely and almost reverse it, alas. In my reading/research I've seen that the most noted side effect of Tamoxifen for men is weight gain (about 22% of men report that) but I've also decided that I can't curtail taking Tamoxifen even if I continue to gain (I'll hope it levels off soon); the risk of another breast cancer episode is too great.


Thanks for your input!

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Jun 16, 2017 03:06PM Traveltext wrote:

Agree with you on the importance of the Tamoxifen. Bad luck that you joined the 22% group, but still work away on diet and exercise and you may get your weight down.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Jun 16, 2017 03:12PM Traveltext wrote:

Agree with you on the importance of the Tamoxifen. Bad luck that you joined the 22% group, but still work away on diet and exercise and you may get your weight down.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Nov 27, 2017 04:16AM Jcempire wrote:

I'm going for the world record lol, first had Tamoxifen from 1999 to 2009 (had 2 a day before surgery). Stopped for 7 years then it returned in my bones so back on it since Jan 17. I respond well to Tamoxifen so could be another 10+ years taking it. At least it's free this time. I worked out I have been taking Tamoxifen for nearly a quarter of my life.

Never had any side effects, take it first thing in the morning.

Good luck!

Dx MSCC: Surgery 11/4/2016: Anterior Sternotomy and Anterior T2 Copectomy + Cement and Titanium Plate Surgery 12/16/2016: T1 - T3 Posterior fixation Hormonal Therapy 6/9/1999 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/1999 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 6/10/1999, IDC, Left, 1cm, Stage IIA, metastasized to bone, Grade 1, 2/26 nodes, ER+/PR-, HER2- Chemotherapy 6/30/1999 Radiation Therapy 1/13/2000 Whole-breast: Breast Dx 10/28/2016, IDC, 1cm, Stage IV, metastasized to bone, Grade 1, 2/26 nodes, ER+/PR-, HER2- Surgery 11/3/2016 Surgery 12/15/2016 Radiation Therapy 1/10/2017 External: Bone Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 29, 2018 03:13PM RonnyHouse2 wrote:

How long have you been off tamoxifen? Has your libbo come back. My husband has breast cancer. I can deal with no sex. And believe me it has been awhile. But there is no intimacy at all. He has been on it five years. He wants to stop. I’am scared for him.

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May 29, 2018 10:36PM Traveltext wrote:

I’ve been on Tamoxifen for four years now and don’t have a libido problem despite having a prostatectomy 18 months ago. I’d suggest couple counselling to get the intimacy restarted. That can come from the head as much as the sex organs.

It is possible to stop the drug after five years but talk to your medical team about this first.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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May 31, 2018 04:26PM Tutaj wrote:

I never had a libido problem. Sex drive is as strong as ever! At the recommendation of my oncologist, i stopped Tamoxifen after 6 years and is has now been 3 more years after that. At my annual physical, my blood tests include those additional items for breast cancer, so I no longer see my oncologist any more. So far so good.

Tutaj

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