Posted on: Jun 4, 2011 05:59 PM
Joined: Jan 2011
Posts: 8
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!!
Diagnosis: 11/17/2010, IDC, 3cm, Stage II, Grade 1, 0/17 nodes, ER+/PR-, HER2-
Log in to post a reply
ithaca
Ithaca, NY
Joined: Feb 2010
Posts: 24
Log in to post a reply
Jun 5, 2011 02:54 PM ithaca wrote:
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.
Diagnosis: 8/1996, IDC, 1cm, Stage II, Grade 2, 1/16 nodes, ER+/PR+
Log in to post a reply
Jun 6, 2011 05:28 PM, edited Jun 6, 2011 08:51 PM
by 1rarebird
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
Diagnosis: 5/15/2009, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
Log in to post a reply
Jun 7, 2011 07:06 PM Larry44 wrote:
My primary side effects were night sweats and loss of libido. I took Tamoxifen for 5 years, which is the standard length of treatment.
Male breast cancer survivor
Diagnosis: 4/30/2004, IDC, 2cm, Stage II, Grade 2, 1/8 nodes, ER+/PR+, HER2-
ChrisBern
Montréal, Qc
Joined: Dec 2008
Posts: 33
Log in to post a reply
Jun 13, 2011 09:30 PM ChrisBern wrote:
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.
Diagnosis: 11/13/2008, IDC, <1cm, Stage Ib, Grade 3, 0/3 nodes, ER+/PR+, HER2-
Log in to post a reply
Jun 17, 2011 11:15 PM usetheforce wrote:
Thanks everyone for the replies! I am starting Tamoxifen on Sunday. I am hoping it goes well with not too many side effects.
Diagnosis: 11/17/2010, IDC, 3cm, Stage II, Grade 1, 0/17 nodes, ER+/PR-, HER2-
Haljen
West Babylon, NY
Joined: Jun 2011
Posts: 45
Log in to post a reply
Jun 18, 2011 06:26 PM Haljen wrote:
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.
Log in to post a reply
Jun 30, 2011 11:11 AM 1rarebird wrote:
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
Diagnosis: 5/15/2009, IDC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
Log in to post a reply
Jun 30, 2011 06:01 PM Larry44 wrote:
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.
Male breast cancer survivor
Diagnosis: 4/30/2004, IDC, 2cm, Stage II, Grade 2, 1/8 nodes, ER+/PR+, HER2-
Haljen
West Babylon, NY
Joined: Jun 2011
Posts: 45
Log in to post a reply
Jul 7, 2011 10:30 PM Haljen wrote:
Thanks for the responses, I'm sure he will at least try it. He's half way through chemo.
Log in to post a reply
Jul 17, 2011 12:31 AM Mikeswife wrote:
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
Laura, Wife of Male Breast Cancer Survivor
Winnymac
Salem, Oregon
Joined: Jul 2012
Posts: 30
Log in to post a reply
Jul 13, 2012 02:45 AM Winnymac wrote:
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
Log in to post a reply
Jul 13, 2012 11:30 PM 1NippledBandit wrote:
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.
Breast cancer, it's not just for women anymore!
Dx 6/1/2010, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+, HER2-
Log in to post a reply
Jul 25, 2012 06:27 AM Charles_Pelkey wrote:
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.
Charles F. Pelkey
Dx 7/27/2011, IDC, 2cm, Stage IIa, Grade 3, 1/10 nodes, ER+/PR+, HER2-Surgery 08/04/2011 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Surgery 08/10/2011 Mastectomy (Both)Chemotherapy 09/08/2011 Adriamycin, Cytoxan, TaxolHormonal Therapy 01/15/2012 Tamoxifen
Log in to post a reply
Jul 25, 2012 07:29 PM steelrose wrote:
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.
Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
Log in to post a reply
Aug 9, 2012 09:40 AM VooDoo-Nickel wrote:
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.
Surgery 06/23/2011 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 07/28/2011 Abraxane, Cytoxan, TaxolRadiation Therapy 01/18/2012 ExternalHormonal Therapy 02/27/2012 Tamoxifen