Affinitor and Exenamestine (Aromasin) - SHARE Metastatic ...

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Affinitor and Exenamestine (Aromasin)

Imtired profile image
5 Replies

After taking Ibrance and Faslodex for 10 months, they stopped working. I am being started on Affinitor and Exenamestine. I am wondering how these meds are tolerated and what side effects are related to the meds. Any problem with mouth sores and if so how were they treated.

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Imtired profile image
Imtired
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beachlover65 profile image
beachlover65

Hello! I have been on this combo since the end of May. I do have mouth sores, but they are better now that I am treating them with a gel made by Periosciences that is used for gums and soft mouth tissue. I also have swelling in my ankles. I just try to keep active. I have been stable, but am watching my CA27-29 number closely. I, like you, had Ibrance and Faslodex fail on me. I am hoping for more stability! I also hope that you do well on this med combination! I wish you all the very best!

Imtired profile image
Imtired in reply to beachlover65

Thanks for the reply. When did the mouth sores start and do they get better as time passes.

How do you manage meals?

beachlover65 profile image
beachlover65 in reply to Imtired

Hi, they started after about two months, but now they are less frequent. I put this gel on twice a day, at least. I had a bunch on the tip of my tongue for about 6 weeks. It was awful, to be truthful! It was hard to eat, and even affected my speech. I really hope I don't get them there again!! You will be all right! If the meds work, it's worth it! Just be sure it's working! That's where I am now - not sure. One of my liver function numbers is going in the wrong direction.

PJBinMI profile image
PJBinMI

I'm on Aromasin as third line treatment and am finding it pretty easy to be on. I've had mbc for over 14 years and have been in treatment this whole time. I am tired and my short term memory isn't what it was but I don't know how much of either of those is from cancer, cancer treatment or age! I was 57 when I was diagnosed and am 72 now. I did not tolerate Ibrance well and ended up with damaged lungs from it. How we do is very individual, both in terms of managing cancer cells and side effects. I hope you will find this combo easy to be on. If you have any breathing or other lung issues, though, bring that to your onc's attention immediately. Afinitor can have very serious lung side effects.

Newtkim1 profile image
Newtkim1 in reply to PJBinMI

Wow! You are amazing! 14 years...gives me new hope. I’m 54 and the Faslodex/Ibrance stopped working for me after 6 short months. Am now on IV chemo - Carboplatin and Gemzar. Though the chemo regimen is tough, I will keep on the path, ever hoping for new treatments to come along. Women like you certainly give me faith!!

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