Post Tamoxifen effects

spotsygirl
spotsygirl Member Posts: 2
edited March 2014 in Breast Cancer #1
I swear I must be the total backwards person when it comes to Tamoxifen. I took it successfully for 5 years. No side effects. Felt great. One month after stopping it I had a headache for an entire month and ended up having an MRI to make sure I did not have something else going on. In the year since stopped it, I noticed marked thinning of my hair. I did not put 2 and 2 together until recently. I seem to have the exact reverse of what others experience. I almost want to go back on Tamoxifen to see if my hair improves and if my now regular headaches stop. Any one else out there have a similar experience. Will my hair ever return to its old thick wavy self. It was great hair prior to 6 cycles of chemo. Adriamycin took care of that and I got a head full of corkscrew curls post chem. That straightend out and I lost all the wave. Stayed thick though. Now I have this. Would love to hear from anyone who may have had the same.

Comments

  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #2
    I don't know ...
    Dear spotsygirl,

    I've just been on Tamoxifen for a few weeks, so I can't answer your question. I did, however, have horrible headaches when I started it. I took 1/2 in the morning 1/2 at night ... and when I took it in the morning I had a headache the rest of the day. I started taking the whole pill at night, and the headaches stopped. So ... the headaches may be your body re-adjusting after Tamoxifen.

    Have no idea why the hair thinning unless since you've stopped taking the Tamoxifen,have you started menopause? I know women experience hair loss after it.

    I don't know what it going on with you, but I would definitely talk to your onocologist and /or pharmacist to ask their opinion.

    Let us know what you find out.

    Hugs,
    dh
  • Akiss4me
    Akiss4me Member Posts: 2,188
    #3
    I agree...
    I have been off Tamoxifen for three weeks to have my ovary surgery. I start back on it tomorrow. I do take my pill at night too, so to minimize side effects. I was off the Tamoxifen 1 week and got such a bad headache while I was in the hospital that they had to give me some Toredol. I still have a slight headache off and on. I will pay attention to if they stop once I am back on the Tamoxifen. It may be our bodies adjusting to not having the chemical in our system. ♥Pammy
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #4
    Welcome, spotsygirl
    Glad you found us, though sorry for the reason.

    I took Tamoxifen for 2 years; then, switched to Arimidex - 3+ years now and still counting.

    Don't know/had no experience with headaches. The hair thinning... My mother, and other women I know - no BC, no Tamoxifen, etc. - complained about hair thinning during natural menopause. So - I think it happens to most, anyway and eventually.
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #5
    Christmas Girl said:

    Welcome, spotsygirl
    Glad you found us, though sorry for the reason.

    I took Tamoxifen for 2 years; then, switched to Arimidex - 3+ years now and still counting.

    Don't know/had no experience with headaches. The hair thinning... My mother, and other women I know - no BC, no Tamoxifen, etc. - complained about hair thinning during natural menopause. So - I think it happens to most, anyway and eventually.

    Hoping you do ok on
    Hoping you do ok on Tamoxifen. I don't know that much about it as I am not taking it. Ask your oncologist. He should be able to answer your questions.

    Debby
  • spotsygirl
    spotsygirl Member Posts: 2
    #6
    Dawne.Hope said:

    I don't know ...
    Dear spotsygirl,

    I've just been on Tamoxifen for a few weeks, so I can't answer your question. I did, however, have horrible headaches when I started it. I took 1/2 in the morning 1/2 at night ... and when I took it in the morning I had a headache the rest of the day. I started taking the whole pill at night, and the headaches stopped. So ... the headaches may be your body re-adjusting after Tamoxifen.

    Have no idea why the hair thinning unless since you've stopped taking the Tamoxifen,have you started menopause? I know women experience hair loss after it.

    I don't know what it going on with you, but I would definitely talk to your onocologist and /or pharmacist to ask their opinion.

    Let us know what you find out.

    Hugs,
    dh

    Tamoxifen
    Apparently I am just weird. When I told my oncologist about the post tamoxifen headache she had never heard of it which is why I ended up with an MRI because her first thought was that I had possibly spread to the brain. Thankfully not that :o) I truly think I was a fortunate person in that I took tamoxifen without any issues; the entire 5 years and if anything felt very good on it. I was just curious whether anyone else had experienced this or the hair loss.

    I was diagnosed in 2003. Had stage IIA or B depending on which path report you look at. I did 6 cycles of chemo and did very well with that. No radiation due to a very rare form of skin cancer that I have.

    I underwent tissue expander and then silicone implant a few years ago but am considering removing the implant. Just don't like the idea of something there that does not belong there. Not like anyone sees me naked other than me and spouse. I am leaning towards removal so that if there is a chance of recurrence I will feel it better without implant. We will see

    I appreciate everyone responding. I feel very grateful to be coming up on 2010 without recurrence.

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