Wanting to get off Tamoxifin

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Jobean
Jobean Member Posts: 1
edited August 2014 in Hormonal Therapy - Before, During, and After

Hello!  I'm new to the forum and hope to learn and get advise on this subject.

November 1st will be 5 years cancer free!   I'm 54 I had a lumpectomy, chemotherapy and radiation.  I have been on Tamoxifin for 4 years 2 months and just don't want to do it anymore.  I have had bad side effects through it all and am just plain tired of it all.  Ache everywhere, gained 40 pounds (have lost 10 recently), tired, and just not happy.  I know it is only 10 months to go but that seems like eternity to me at this point.

Can anyone tell me their story and if they quit taking this drug?  I know from what I have read online I'm not the only one but one of many with horrible side effects. 

I wonder if there are any statistics on woman who have taken it less than 5 years.

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  • Oncearunneralwaysarunner
    Oncearunneralwaysarunner Member Posts: 252
    edited August 2014

    Hi Jobean,

    I certainly have not been on tamoxifen as long as you but here is my story and where things are regarding this drug for me. I was diagnosed in June 2013 at 31 years old with locally advanced, triple positive IDC that had spread to the lymph nodes. I had FEC-D chemo, then surgery, then radiation. I'm still on Herceptin until October and I started tamoxifen on March 31 of this year. After a few months on the full 20mg dose I was sleeping horribly with hot flashes 3-4 times a night, started to develop anxiety for really stupid reasons and lost my appetite. I've actually lost 15lbs without doing anything from the anxiety and loss of appetite since I started. Not to forget the hair loss. I also noticed that my heart rate was shooting up when I ran, more than before I started the tamoxifen.

    When I had my appointment with my MO in June I mentioned all of these side effects and he advised that I cut my pills in half to see if that would help with the side effects. Apparently half a dose is more than adequate. He told me to do this for 6 weeks and report back. After 6 weeks the only thing that changed was the frequency and severity of the hot flashes. He has now requested that I stop the tamoxifen for 6 weeks to see if my side effects resolve. It's a process of elimination. I'm willing to try a few different things but at the end of the day quality of life is very important to me. I'm also planning on taking a tamoxifen baby break in a year or two. I need to double check with my MO when the best time for that will be.

    I'm not suggesting you try any of this without speaking with your MO, but it can certainly be something you can call him/her about and see if going for a half dose might help and give you the benefit you still need. I've also read on there that some ladies take half in the morning and half at night and that has helped their side effects.

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited August 2014

    You might read and consider the investigation being made by the Karolinska Institute, where they are trying to determine whether the amount of diminished breast density by use of tamoxifen can be accurately measured and whether the degree of breast density diminishment is an indicator of whether or not tamoxifen is useful for that patient, as well as the optimal duration of use of the tamoxifen.

    I was 52 at time of treatment, and happened to notice that in my case, the mammograms done just prior to starting tamoxifen were VERY dense, and within 3 months of starting the drug, the density had entirely disappeared. I was dealing okay with the constant hot flashes but chose to do instead 1 year at full dose and 3/4 year at half-dose -- in part because I was aware that 1/3 of those who are HER2 positive do worse on tamoxifen. Perhaps those also are just those for whom tamoxifen simply does not work at all (i.e., perhaps the tamoxifen wasn't "causing" the cancer to do anything and if so then another drug might have worked instead).

    Google tamoxifen and Karolinska Institute and density.

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2014

    Firstly jobean, welcome to the BCO Forum.

    You may find parts of the BCO Main Site article of interest What My Patients Are Asking: Should I Take Tamoxifen for 10 Years ... or search for others there.

    We wish you the best in finding what is best for you.

    The Mods

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