Recurrent metastatic endometrial cancer: Letrozole indefinitely?

Posted by charlieboy @charlieboy, Sep 27 10:21pm

I'm in 9 year remission from recurrent metastatic endometrial cancer. I have been on letrozole for 9 years without serious side effects. I'm on bone meds for osteoporosis. I thought I would be on letrozole for 10 years. My oncologist retired and the new one informed since I was stage 4 at recurrence it would be better if I continued letrozole indefinatly. Has anyone else experienced this?

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@charlieboy I do not have experience with letrozole and so I cannot provide you that information. I'd like to comment that your 9 year remission from recurrent metastatic endometrial cancer is inspirational.

Since the new oncologist recommended that you remain on letrozole indefinitely I wonder if you'd like to get an option from another oncologist?

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@charlieboy I do not have experience with letrozole and so I cannot provide you that information. I'd like to comment that your 9 year remission from recurrent metastatic endometrial cancer is inspirational.

Since the new oncologist recommended that you remain on letrozole indefinitely I wonder if you'd like to get an option from another oncologist?

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@naturegirl5
Thanks this is true a second opinion is always good idea. Thanks

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Wow that’s so hopeful to hear about it your long remission! I’m on Letrozole too. I’d stay on it as long as it’s working! That’s just me though and we all have different things to consider! Do you still have your ovaries?

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Profile picture for keirahaley @keirahaley

Wow that’s so hopeful to hear about it your long remission! I’m on Letrozole too. I’d stay on it as long as it’s working! That’s just me though and we all have different things to consider! Do you still have your ovaries?

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@keirahaley
I had a full hysterectomy in 2009 I had stage 1b endometrial and 1a ovarian. But it was the endometrial that came back in 2016. I did skip a few years of checkups which allowed it to get to stage 4. Thankfully found a great surgeon. I agree with you that I will continue with it since it is working so well. One dr said if it's not broke don't fix it. I sure don't want to look back with regret should I stop it and it comes back. I think when I first heard I would need to continue it it just shocked me but now I'm OK with it and just grateful the letrozole has worked so well for me. And I hope letrozole continues working for you also

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Profile picture for charlieboy @charlieboy

@keirahaley
I had a full hysterectomy in 2009 I had stage 1b endometrial and 1a ovarian. But it was the endometrial that came back in 2016. I did skip a few years of checkups which allowed it to get to stage 4. Thankfully found a great surgeon. I agree with you that I will continue with it since it is working so well. One dr said if it's not broke don't fix it. I sure don't want to look back with regret should I stop it and it comes back. I think when I first heard I would need to continue it it just shocked me but now I'm OK with it and just grateful the letrozole has worked so well for me. And I hope letrozole continues working for you also

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@charlieboy, in addition to the reply you got from @keirahaley. I'm tagging other members like @cookercooker @basketballpal @cjacobs99 and @doshi, who have experience with letrozole (or other aromatase inhibitor) for metastatic endometrial cancer.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@charlieboy, in addition to the reply you got from @keirahaley. I'm tagging other members like @cookercooker @basketballpal @cjacobs99 and @doshi, who have experience with letrozole (or other aromatase inhibitor) for metastatic endometrial cancer.

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@colleenyoung
Thanks for the information. I will check them out over next few days.

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I was taking Letrozole for about one year for metastatic ovarian cancer, but had substantial side effects from it, so I discontinued it on my own. Recently however, my GP ran an inhibin B test which they were using as my tumor marker and it was really high. My GP has referred me to a new OB/GYN Oncologist that I'll see at the end of the month. I will let you know if I'm put back on an aromatase inhibitor again. I don't want to wait until it may be too late for a treatment regardless of side effects. Best wishes to you in the future and for the success you have had with your treatment.

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Profile picture for basketballpal @basketballpal

I was taking Letrozole for about one year for metastatic ovarian cancer, but had substantial side effects from it, so I discontinued it on my own. Recently however, my GP ran an inhibin B test which they were using as my tumor marker and it was really high. My GP has referred me to a new OB/GYN Oncologist that I'll see at the end of the month. I will let you know if I'm put back on an aromatase inhibitor again. I don't want to wait until it may be too late for a treatment regardless of side effects. Best wishes to you in the future and for the success you have had with your treatment.

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@basketballpal
Thanks for your story. Hopefully new dr will find right treatment.
I have been in letrozole for 9.5 years with few side effects. Main one is my bones but osteoporosis runs in my family. I haven't had joint pain hot flashes. I think it has effected my energy or it's because im 9 years older. I hope whatever you chose works a m d has few side effects. Please let me know what you learn

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Thanks so much for your well wishes. When I was on the letrozole it knocked my Inhibin B levels down very effectively, but then they tried Anastrozole and it was not as effective in knocking the numbers down, but had similar side effects on me which were mainly feeling exhausted and it seemed I was sleeping so much, but never felt rested. I had read where it can affect your bone health, but if they can give you something for that concern, it is great. Thanks for your input and I'll check back on here when I see the new doctor! 🙂

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Profile picture for basketballpal @basketballpal

Thanks so much for your well wishes. When I was on the letrozole it knocked my Inhibin B levels down very effectively, but then they tried Anastrozole and it was not as effective in knocking the numbers down, but had similar side effects on me which were mainly feeling exhausted and it seemed I was sleeping so much, but never felt rested. I had read where it can affect your bone health, but if they can give you something for that concern, it is great. Thanks for your input and I'll check back on here when I see the new doctor! 🙂

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@basketballpal
Looking forward to hearing what your new dr says. Take csre

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