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How long did you stay on aromatase inhibitor?

Tamlen's picture
Tamlen
Posts: 319
Joined: Jan 2018

I continue to wrestle with the side effects of the aromatase inhibitor (AI) I've been on  since chemo and brachy. It's 3 years at this point and my gyn onc has now asked me to consider going off the AI because the side effects are increasingly disabling despite the fact that I'm very active (most recently, it's causing tightening and damage to connective tissue, causing repeated sprains and injuries to wrists, thumbs, ankles, knees, feet).

My onc tells me that there is really no way to know if the AI is what's keeping my cancer at bay (I'm Stage IVB and NED) or doing nothing at all to help and I'm just lucky. While proven for ER+ breast cancer, she tells me there are no such studies for uterine cancer and its prevalence for uterine cancer is just an off-label use based on the breast cancer studies. She says 5 years is the max she would want me on it anyway, so even if I stay on it for now, the most I have is 2 more years on it.

So that's the backdrop. Now my question for those of you who've completed frontline treatment and been on letrozole (femara), anastrazole (arimidex), or exemstane (aromasin) for at least a year (not tamoxifen, which is a different class of drug):

  1. How long did you / have you remained on it?
  2. If you stopped taking it, what prompted the decision to stop?
  3. If you were on one of those three AIs, stopped, and later had a recurrence, about how long after you stopped the AI did you experience the recurrence?

Thanks,
Tamlen

barnyardgal
Posts: 274
Joined: Oct 2017

Hi. I've been on Letrozole for 3 years.  I've been lucky and have had no side effects so far. The doctor orginally said 2-3 years, but last time I talked to her she said maybe we would go a couple more years. I had a bone scan recently as one of the side effects can be bone loss. Fortunately, everything is still fine. I see her again this fall, so I'll see whether she wants me on it a little longer. I was 3a, stage 2 with no recurrence so far.

Tamlen's picture
Tamlen
Posts: 319
Joined: Jan 2018

Thanks, barnyardgal. I appreciate the information!

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