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gypsy's avatar
gypsy
Member
11 years ago

Tamoxifen/Aromatase Inhibitor

Hi Ladies, I started Tamoxifen late last year and my body didn’t like it, lots of aches and pains and more importantly constant migraines/headaches.

I’ve always suffered with migraines which are hormone related due to drop in oestrogen, use to have them monthly along with my period. My oncologist suggested half a tablet which seemed to ease the symptoms, it took away the migraines but still headaches.

On January 1 I had to alternate, with half a table one day and the whole the next. Symptoms increased, as of 19th (yesterday) I’ve had to go to full dose.

I have an  apt scheduled with oncologist next month to see how I’m going with the meds and I know she will want me to go on the Aromatase Inhibitor. I'm a little worried to do that as i have the start of Osteoporosis. I want to know if anyone is on this and if there are any symptoms and if they have decreased over time.

I don’t want to get to the point that I don’t take anything at all because of side effects as my cancer is 98% receptive to hormone. My oncologist told me that taking Tamoxifen /Aromatase was more important than any of the other treatment in keeping the cancer away. 

pain
side-effects
tamoxifen

8 Replies

  • mgndam1603's avatar
    mgndam1603
    Member
    11 years ago

    I started on Arimidex but had major issues with side effects and they moved me to Tamoxifin of which I still have issues but they are managable.

    My onc has said that they will move me back to a Aromatase meds eventually but that there are plenty of options within that group. So maybe they just have to try different meds and see which one suits you. I have found that even on the Tamoxifin there is a difference in the brands.

    Its all trial and error I think.

    Take care

    Donna

  • gypsy's avatar
    gypsy
    Member
    11 years ago

    Thanks Mona a medication holiday sounds great!! Something to think about down the track after Ive got it all sorted. .

  • Linda27's avatar
    Linda27
    Member
    11 years ago

    I have been on Tamoxifen since May last year and have been having increasing joint pain, especially in my shoulders. 

    I have suffered with migraines since I was 11yo that were hormonal.  I have not had a significant increase in my migraines since starting on the Tamoxifen, although that could also be that my oestrogen levels are still pretty low following chemo and Zoladex injections.  

     

     

  • mona63's avatar
    mona63
    Member
    11 years ago
    Not sure if this useful but recent talks with my oncologist: I'm committed to tamoxafen but a few side effects and suggestion was to have 6 week break from it at some stage and to see or enjoy any difference...apparently some evidence to say after 5 year then should have 3 month breaks : anyway I'm just toying around with this but enjoying the thought of having a possible little medication holiday....
  • AnnaB's avatar
    AnnaB
    Member
    11 years ago

    It's pretty frustrating isn't it.  I remember when I thought it would be smooth sailing once I got through surgery, Chemo and radiation.  I was completely ignorant of the possible side effects of ongoing medication.  Like you I had a highly positive oestrogen receptive tumor.  So I really get your anxiety about the scary possibility of  not being able to tolerate a hormone blocker.  Joint pain is bad but headaches - that really sucks. 

    Fingers crossed that your body submits/tolerates/adapts to Tamoxifen.

     

  • AnnaB's avatar
    AnnaB
    Member
    11 years ago

    It's pretty frustrating isn't it.  I remember when I thought it would be smooth sailing once I got through surgery, Chemo and radiation.  I was completely ignorant of the possible side effects of ongoing medication.  Like you I had a highly positive oestrogen receptive tumor.  So I really get your anxiety about the scary possibility of  not being able to tolerate a hormone blocker.  Joint pain is bad but headaches - that really sucks. 

    Fingers crossed that your body submits/tolerates/adapts to Tamoxifen.

     

  • gypsy's avatar
    gypsy
    Member
    11 years ago

    Thanks Anna. I'm well passed menopause as well, and because of the osteoporosis Tamoxifen seemed like the best solution. Ive been taking the full dose since Sunday and every day really bad headaches. I hope my body gets use to it quick. Thanks for your support. 

  • AnnaB's avatar
    AnnaB
    Member
    11 years ago

    Gypsy, I'm so sorry you have had issues with Tamoxifen.  I have advanced Osteoporosis so even though I'm well passed menopause Arimidex wasn't an option for me.  I'm grateful for only having minor joint pain on Tamoxifen and I was told it's possible Tamoxifen may slow my bone loss.  That would be wonderful of course. 

    You may not have any trouble with Arimidex, hopefully your Onc will continue to work with you.  Everyone's body is unique so I was interested to hear you tried a reduced dose, maybe half a tablet or less everyday or every other day will work for you?  Not much help - just wanted you to know I'm rooting for you.