Anyone find taking an AI Easier than Tamoxifen?

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labelle
labelle Member Posts: 721

I've officially flunked out of Tamoxifen. Quit taking it a couple months ago, primarily due to cognitive problems severe enough to have basically cost me a job, although I had other pesky, but manageable problems while taking it. I can't see going back to it-I still have to work and now have another job that I better not screw up! Jobs are not that easy to come by at this point in my life. Not ready to and can't afford to retire at 54, plus I feel really good now.

My oncologist liked tamoxifen for me, saying an AI is overkill in my case and that I wouldn't like the side effects. Despite having a positive node, I had tubular breast cancer, a rare form that seldom metastasizes (of course, those with it are seldom node positive, but she still believes my risk is low despite this) . I'll see her again the end of Feb. and am thinking about asking her to let me try an AI at this point, although my bones don't look great (no osteoporosis, but osteopena (sp).

Also has anyone NOT had bone loss with these drugs and w/o using biophosphates?

Thanks

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  • Celand
    Celand Member Posts: 264
    edited January 2018

    I have been taking Tamoxifen for almost 7 months - I do notice that my memory is not as good as it used to be however, I write things down, so that is how I have been compensating at work (plus I am fortunate that I have very understanding bosses and co-workers, so don't have to worry about losing my job).  Other side effects that I have encountered on tamoxifen are leg cramps, insomnia, occasional elbow joint pain, vaginal dryness & discharge (not at first but more the last couple of months) - now I have been noticing some cramping, like I am going to start my period but I have not.  My gyn told me to notify her immediately if I have any bleeding.  I am 52 years old and tested post menopausal except estrodial levels were almost post-menopausal so was definitely almost there.  My 1st med oncologist prescribed Arimidex for me and I took that for about 2-1/2 months,  but had horrible joint pain, rash, blurry vision and had to take at bedtime because it made me very drowsy.  But he never addressed these issues.  I ended up switching to tamoxifen due to a heavy episode of vaginal bleeding that I had.  My 1st med onc reluctently switched me but kept insisting that I was post-menopausal because of my blood work.  I have remained on tamoxifen and now see a new med onc (a woman and she is much more understanding of these issues) - she told me that she always makes sure that before she prescribes an AI to a patient, their blood test needs to indicate post menopausal and they have no bleeding for one complete year, so I should not have been put on the AI (unless I had a complete hysterectomy).    

    When I first began taking Arimidex, my bone density test was normal but I was low on vitamin D,so 1st med onc had me take 2 Caltrate D and one vitamin D per day, now I am not low on vitamin D.  Tamoxifen is supposed to strengthen bones I thought?  So, I don't think that I had any bone loss in the time that I have taken these drugs, but maybe that will happen if one takes them long term?


  • KleeKai
    KleeKai Member Posts: 29
    edited January 2018

    I started tamoxifen 10/1/15 and discontinued its use mid-June 2017 (now in menopause).  I never realized until I was off it that it was causing my low mood and fatigue.  I got switched to Arimidex, which was just as bad, causing both the low mood and fatigue plus vertigo and joint pain.  After three months, my onc switched me to Letrozole (femara).  My mood and fatigue have lifted greatly.  Unfortunately, my joint pain has not improved.

    Like Celand, I used to keep notes too.  At work, I'd build folders in email to store topics, or create a word document to sum-up issues.  My memory is much better on Letrozole but I still use notes at home.

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