Anyone on Afinitor ?: Looks like a drug... - SHARE Metastatic ...

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Anyone on Afinitor ?

caw517 profile image
5 Replies

Looks like a drug change is in my future. I have been on Ibrance for nearly 6 years and my onc is taking me off it...because of progression... I have had the Ibrance in 3 different combos , the last being with Faslodex for the past 2 years. But once again there is progression and we will be making a change. As much as Ibrance caused me fatigue , low wbc and low platelets, it also was my safety net for 6 years and I am nervous about getting off it. I have the utmost confidence in my onc and we have discussed the alternatives alot. So for now I will be switching to Alfinitor and keeping on the Faslodex. Anyone else on this combo or have any experience with Afinitor??

I need some good thoughts... and encuragement!

thanks----Carol

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caw517
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Hazelgreen profile image
Hazelgreen

I'm impressed that you have developed such a positive relationship with your oncologist that you "have discussed the alternatives alot" with him/her! Its great that you have complete confidence in your treatment provider.

I've only had experience with Kisqali in terms of a targeted drug but my guess is that you may not experience more side effects with Afinitor than you did with Ibrance. I hope you will receive responses from women who have had direct experience.

In the mean time, I wish you good luck!

Hugs,

Cindy

8576 profile image
8576

Sometimes the switch to a new drug is made in haste. You didn't say if the increase was slight or more advanced. So if it was slight I would stay on the Ibrance one more session.

To answer your question about Afinitor, the side effects scared me off.

I was put on Verzenio as a last effort before Chemo IV. (which I had pretty well rejected).

It was successful after the second round. NED! First round showed slight increase.

Hope it continues.

Cheers, June S.

Bettybuckets profile image
Bettybuckets in reply to8576

Just to understand what happened… you said the Verzenio was last ditch before chemo.. so you went through a lot of treatments? And still reached NED with Verzenio? I’m wondering because I was starting to fail on Ibrance so a quick switch to V and I feel better after just a week. Did your time on Verzenio also work quckly? I’m trying to figure out if this is usual or just wishful thinking on my part.

8576 profile image
8576 in reply toBettybuckets

Yes, I went through the list of meds and ended up on Verzenio. It didn't quite work the first round of 3 months there was progression but it was smaller than usual . So decided to keep on it for another 3 months. It wasn't NED it was only stable but at least it was working. Hope this helps.

Cheers, June S.

purplelikep profile image
purplelikep

Hi there. I am approaching month 3 on Afinitor (with Faslodex). I was previously on Verzenio (also with Faslodex) for less than a year before having progression so this is my "second line" treatment since upgrading to club MBC at 34.

I've tolerated Afinitor okay. I like that it is only one pill as opposed to Verzenio's twice a day. It's much easier on my stomach than Verzenio was too. Make sure you get the steroid mouth wash from your doctor as mouth sores are a huge concern for the first 8 weeks or so. The mouthwash was the most annoying part by far but it seemed to keep them mostly at bay for me. I've definitely experienced fatigue but it hasn't been too bad overall. We will see if I stay on Afinitor in the next few weeks as I might have had continued progression on my spine but my tumor markers seem to still be trending down so we are hoping i'll not have to switch off too soon. Best of luck!

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