Just over a month on Tamoxifen

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Marstons
Marstons Member Posts: 9
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

I'm just over one month on Tamoxifen after an LCIS diagnosis in February. The side effects seem to continue to evolve, and get more annoying. I still consider them tolerable. But for how much longer, I don't know. First it was very jarring cold flashes. Now I seem to shift between more gentle onset cold and warm flushing within very short periods of time, pretty much all the time. I'll take the cold flashes over warm flashes anytime. Those just feel really bad. My rosacea is most definitely worse and then there is the acne. Will the side effect be constantly evolving or will I get to a place where I can actually have an idea of what I'll be living with for the next 5 years?

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  • leaf
    leaf Member Posts: 8,188
    edited April 2014

    Every person is different, so I can't tell you what the future will hold for you. 

    I'm sorry this is happening to you. Its so hard  when we don't have answers.

    We all want the world to make sense, so we want to find a cause for whatever is happening to us, but do remember 'association is not causation'. 

    I had cold and warm flashes when I started tamoxifen, but I was going through peri-menopause at the time, plus had thyroid issues, plus others, so my temperature control might have been off for many different reasons.  My temperature control issues did go away while I was on tamoxifen. (For me it took about 3 months.)  Maybe I just got used to them, I don't know. While I went through my 5 years of tamoxifen, I got about 5 more conditions (some minor, some major).

    I'm not at all trying to negate your experience, but this study proposed tamoxifen as a possible treatment for rhinophyma (which I am guessing is similar to rosacea.) nor can I find associations between tamoxifen and acne.  http://www.ncbi.nlm.nih.gov/pubmed/?term=tamoxife...

    I'm not saying that tamoxifen doesn't cause your symptoms, only that I can't find Pubmed articles that report that.  Its so hard when we don't have answers.

    But, whatever the cause, you still have to deal with these conditions, even if temporarily.  Whatever path you choose, continue or stop tamoxifen, cope with your symptoms in whatever way you find best, wear makeup or not  (I've been asked, 'What happened to your face?'), I support your choice.

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  • Marstons
    Marstons Member Posts: 9
    edited April 2014

    You are right, association is not causation. But, dang, a month ago I wasn't having these problems. And the only thing that has changed is the Tamoxifen. I'm working towards cutting out the caffeine. Perhaps that will help. 

    I guess I'm just most uncomfortable with the uncertainty. Not knowing or understanding my body right now. Just when you think you know, it changes. Again.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2014

    Marstons---it takes 2-3 months (in some cases, up to 6) for your body to adjust to tamoxifen; hang in there! you can do it!

    I took tamox for 5 years; feel free to ask any questions you want. (I was diagnosed with LCIS over 10 years ago, now I have been taking evista for over 4 years.)

    Anne

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  • Marstons
    Marstons Member Posts: 9
    edited April 2014

    Thanks Leaf and Anne. I am hopeful that within the next couple of months I reach some amount of stability on Tamoxifen. I kinda think that I just might be on this drug for five or more years, more now that they are looking at 10 year treatments. Then probably different drug after that. A new normal. 

    I have a follow up appointment with my oncologist in June. I hope to have a better idea what my long term screening will look like after that visit.

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  • leaf
    leaf Member Posts: 8,188
    edited April 2014

    I'm sure there is controversy, as in all things LCIS, but my onc said no more than 5 years of tamoxifen for me (unless I had invasive).   I am guessing this is partly or more based on my benign endometrial polyps I had every 1-2 years while on it.  I'm sure different oncs have different opinions, and every person has different risk factors.   Best wishes.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited April 2014

    It does depend on your Oncologist. I have IDC and my ONC said 5 years for me with Tamoxifen. I asked her why not 10 years and she said no reason to. Diane 

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  • mjweis
    mjweis Member Posts: 1
    edited April 2014

    I had quite a problem with my chemo taxotere with body pain and since starting tamoxifen the body pain is back, could this be related?

    MJ

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  • Marstons
    Marstons Member Posts: 9
    edited April 2014

    Interesting. I'm just at the start of my five years. Four years ten months two week plus or minus to go. Who knows what the recommendation will be by then. A lot can change. Both for me and the research.

    MJ, I'm sorry to hear about you body pains. I don't know if it's related, but I do hope it eases for you. Be sure to mention it to your doctor. And take care of yourself.

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