Verzenio long termersfeedback

[luckysmom13]

I've been lucky to meet the chemist who created Verzenio. He is a humble, shy man who works feverishly in his lab at Lilly to develop new drugs .

He got tears in his eyes when I thanked him and said I've been on Verzenio for 4 1/2 years... and hugged me. 🤗

I know it has some unpleasant side effects and doesn't work for everyone. I also realize that some people have strong opinions on pharm companies and the drugs are expensive!

But Is there anyone else who has done well for at least 1-2 years, or have had amazing responses?

I would not share any personal info with the scientist or the Lilly company, just want to thank this kind man! I'd love to tell him that X# of people responded, have been on it for a certain amount of time, and/or and have done well.

Thank you!

Amy

[8576]

I have been on it for less than a year but it is working beautifully for me. It has put my scans at stable. I had to get the report out the next day to be sure I had read it right! Please say thanks to the chemist for me.

Cheers, June S.

[luckysmom13 in reply to 8576]

I'm so glad to hear it! After 6 months I was NED. After 2 years I had a few tiny bits creep in , but over all I've been very stable.

[Nocillo]

Tell him he is doing wonderful work and I am so grateful for the chemists every day!

[Fiercefighter13]

What a wonderful experience it must have been to meet the chemist behind Verzenio!! It sounds very interesting and simply exciting!! I have a degree in microbiology and meeting someone like this would be a dream come true for me. I was on Ibrance for almost three years with my markers going up almost two years of that. I have now been on Verzenio going on my fifth month....so not long term......but, my markers started going down on Verzenio! The best part of this for me is that I feel so much better on Verzenio than I did on Ibrance, as far as side effects. I have had no side effects with Verzenio at all!! No diarrhea, no constipation, no stomach upset, and my blood work is stellar, I'm back to having an immune system, yay!! So far so good! I'm grateful beyond words, please tell him THANK YOU from me and my family!!

[luckysmom13 in reply to Fiercefighter13]

I'm a physician, but haven't been in a lab for over 20 years. We sat and talked about the process of developing the drug. Very cool! They needed a molecule to bind the CDK4/6 and turn off its activity. His lab created 1,200 such molecules and tested every one!! And that was just the beginning!

[Fiercefighter13 in reply to luckysmom13]

It's fascinating! I'm "awe"struck with the scientific advancements that have been made in the last 30 years! I think it's just wonderful that you had the opportunity to talk to this person and find out some of the details of this life saving and life changing medication!

[Figletf in reply to Fiercefighter13]

😁 Yay!!!I have been on Verzenio and Tamoxifen since March 2022 .I had previously been on IBrance,and Zeloda and Anastrozole. This is the first time since my original chemo infusions that I. am starting to lose lots of my hair .

I had diarrhea the first month and have bouts of constipation but otherwise feel pretty good most days .

My scans are stable with only tiny new places being found by the radiologist.My oncologist tells to not be concerned about these but of course I still am🤔

All the best to you!

[kduck]

What are your side effects? I’m on the same treatments you’re on. Do you still work?

[luckysmom13]

I stopped working about a year into my diagnosis due to fatigue and back pain. I was not on Verzenio until a year later.I had terrible constipation for the first month, which then gave way to diarrhea. Most people have the GI side effects.

I'm on so many drugs with several other conditions that it's hard to know what causes side effects.

I know someone who was taken off Verzenio and quickly felt much better!!

[kearnan]

I was on Ibrance when I first started. I could not take the week off. I got very very unbelievably sick. So then she started me on Verzenio 150 mg. twice per day, I stopped after a week bc of the severe diarrhea, then 100 mg. twice per day and again I stopped after two weeks bc of the side effects which were severe diarrhea and I needed to go out (I do not drive) without worrying about that.

Then she said well this is the lowest dose. 50 mg. and also falsodex injections. Lasted three and a half years, no fatigue, no diarrhea. I almost felt normal.

So I was quite upset to find that treatment was over in June when it was found in my liver. I cried. It was like losing a trusted friend.

[Pbsoup]

What a lovely thread. I am so glad you were able to meet the scientist. Big Pharma gets such a bad rap, but there are so many dedicated researchers and scientists who do what to help.

[BBarbie789]

This is truly amazing. So happy for you. I am starting Verzenio and would really like to understand why it causes diarrhea. I’m not a doctor but I understand a lot of medical research and would like to truly understand the root of how and why it effects the gut. Can you shed any light on this or have someone I can contact? My oncologist cannot explain it to me. Thank you so much and bless you. 💛

[LadyKatarina in reply to BBarbie789]

I have read that lots of cancer drugs kill off the cells that line the digestive tract. Verzenio is another one. They might be fast dividing cells also--which is what most of the CDK 4, 6 inhibitors target. Like neutrophils or hair follicles. But that is all I know! Try searching for some articles? (I am a retired lab scientist and worked in research at university and small medical diagnostic companies.) Best to you!