Verzenio question?: Any long time... - SHARE Metastatic ...

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Verzenio question?

Lilywallytootsie profile image
17 Replies

Any long time Verzenio folks out there? I have Cat Scan coming up next week and I am starting to think(worry) where to go next. I am on a long run with Ibrance, but I know it won't continue to work forever. Good wishes and blessings to all. Hannah

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Lilywallytootsie profile image
Lilywallytootsie
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HelenWi profile image
HelenWi

It’s stressful to get scans, we all know that, but if you have no reason to think you have progression, such as unusual pain or big increase in tumor markers, you don’t need to worry about what your next drug will be. When that time comes, your oncologist will have options. The goal is to stay on your drug as long as possible, sometimes even if you have a small progression.

Wishing you peace and a good result!

Lilywallytootsie profile image
Lilywallytootsie in reply toHelenWi

Hi Helen, Thank you for replying. I do get a little stressed when having scans, but I want to be ready when the time comes. Wondering how long Verzenio is working before patients have to move on. I know no other drug will last as long my first one. But I am feeling that I need to get to know the good , bad and ugly about my next choices. I am er/pr+ and Her2- with Mets in lungs. Best wishes, Hannah

HelenWi profile image
HelenWi in reply toLilywallytootsie

Hannah, have you taken a DNA test such as Guardant360? Any mutations you may have can determine your second line treatment.

You also might want to find presentations done by Dana Farber in their embrace program. They discuss sequencing of therapies and tell about the latest drugs and trials.

Helen

Lilywallytootsie profile image
Lilywallytootsie in reply toHelenWi

Thank you. I haven't had DNA testing. Will be having cat scan Tuesday and appointment with oncologist the following week. I will ask him about it. I don't if insurance will allow it without further progression though. Thank you for the information. I will check out Dana Farber's Embrace Program. Blessings, Hannah

Nocillo profile image
Nocillo

I only got 11 months from Verzenio and Letrozole. I much preferred Ibrance. The main difference for me was the diarrhea with Verzenio. And quite a loss of appetite. Nothing to be nervous about, but just more discomfort, at least for me. Good luck 🍀!

Lilywallytootsie profile image
Lilywallytootsie in reply toNocillo

Thank you. I hope to find a good next choice. The cancer will trick the Ibrance at some point and I will have to move on. Was originally told that I could live up to ten years. Those thoughts may have changed as news drugs have come out. Blessings, Hannah

Nocillo profile image
Nocillo in reply toLilywallytootsie

I’m at 9 1/2 years, so you have every chance, plus more hopefully!

Lilywallytootsie profile image
Lilywallytootsie in reply toNocillo

You must have started taking it right after FDA approval. That is an amazing run on one drug. Hope I am that lucky. Do you ever think about where you will go next? I want to have some idea of what I want to do when the time comes. Prayers and best wishes. Hannah

Nocillo profile image
Nocillo in reply toLilywallytootsie

I started out on Anastrozole and Fulvestrant for 6 1/2 years. Then the Ibrance. I’m starting a trial this week. Otherwise my doctor was going to put me on Capcitabine.

mymonkey profile image
mymonkey in reply toNocillo

What trial are you starting?

Nocillo profile image
Nocillo in reply tomymonkey

AC699. That’s all I know so far.

Artesa profile image
Artesa

I am thrilled for you and hold you out as hope for me that I too, will have a long run with Ibrance. I've been on since July 2023 and all is stable. I have to work so hard on anxiety, ruminating and fear most days.. so that when I come across a post like yours I feel calmer and have hope. I think your scans will continue to remain free of any progression. Saying a prayer and feeling good about you!! Big hug and lots of good energy that I am sending your way!

Lilywallytootsie profile image
Lilywallytootsie

Thank you for your good thoughts. Hoping you have a nice long run on it too. Best wishes Hannah

Hazelgreen profile image
Hazelgreen

Hi Hannah,

Live your life as fully as you can! There really is no point to worrying about things you can't change. Perhaps, Ibrance has indeed stopped your cancer from further growth. You may not even need it any more. Focus on something worthwhile! Best of wishes, Cindy

Lilywallytootsie profile image
Lilywallytootsie

Hazel,Thank you. Good advice for all of us. Blessings, Hannah

Lilywallytootsie profile image
Lilywallytootsie in reply toLilywallytootsie

Wanted to let you all know that my scans were good. Hooray!!! Hannah

Liessie2014 profile image
Liessie2014 in reply toLilywallytootsie

That’s so good to hear , so happy for you ❤️

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