New Info on Taking Verzenio as Monotherapy

Did you start this process and how did it go without hormone blockers?

My breast oncologist wanted to "add on" Kisqali to my AI.
Kisqali is a so-called "twin" to Verzenio but, according to my physician, can cause the side effect of severe diarrhea but less than Verzenio. I have IBS for years...so that was her thinking.
I have heart disease and my cardiologist did not give medical clearance for me for Kisqali - much to her dismay.
I hear you about the side effects from the AIs. I am now on #3 within one year and, so far, I am tolerating it better but certainly have the side effects. Most bothersome to me is the headaches...I am a migraine sufferer also, so I can get a double whammy. My oncologist told me that by the end of the year the FDA is going to approve another AI...don't know the name. We'll have to keep an eye on that.
All the best to you.

Verzenio targets specific proteins (cdk 4 and 6) inside existing cancer cells to stop growth and AIs lower estrogen to starve cancer cells of food needed to grow to begin with. The two drugs perform completely different functions.

Verzenio is not easier to tolerate and is not an appropriate alternative for patients who cannot tolerate AIs. I took Verzenio and had to stop due to the severe toxicity of the drug. Not simple side effects. Life threatening toxicity. I have been taking Anastrozole for almost three years. There is no comparison. Lilly may get the FDA approval for monotherapy but that just means Lilly can market the drug to more patients.

Lilly’s American studies are written like PR marketing campaigns. If you look up the Verzenio studies in Japan you will learn that the Japanese government issued a safety alert about the drug.

I worked for Elsevier, Inc. (the largest medical publisher in the world) editing drug inserts and research studies. I have read the Monarch trials. The most important aspect to recognize is the study results are based only on data from patients who were able to stay in the study. The data doesn’t include the high number of patients who dropped out due to adverse events. That purposely skews the results. The percentage of dropouts in these studies was unusually high.

My former oncologist pushed Verzenio on me inappropriately. In my case the drug would only have reduced potential recurrence by about 2%. But the side effects were life threatening.

Make your decision based on your personal risk of recurrence, staging and prognosis. But don’t let Lilly’s marketing campaign force your decision with false promises.

@dmr4ever Thank you very much for your insight, awareness, education and posting on Verzenio. It will give those of us pondering this drug lots to digest and think about.
Glad you disclosed in your case the drug would reduce your potential recurrence rate by about 2%.
Obviously you made the best decision for yourself. And reinforced to all of us the importance of asking our breast oncologists that exact question when they present/push/encourage us to use this drug:
"What is my reduced recurrence percentage rate if I use this drug?"
All the very best to you.

@briarrose I took Verzenio for four months. The side effect that made me stop was that I would wake up, feeling like I was drowning, and I had trouble breathing. That was enough for me. I was done. I also had diarrhea for four months.

Yes, sharon35981...I have heard about terrible difficulty breathing with Verzenio - and all who experience this truly frightening side effect immediately stopped it.
And the diarrhea is severe. That's why my breast oncologist pushed Kisqali for me since I already have bad GI problems but said "it's you decision". Thank goodness my heart doctor took the decision out of my hands.
Hope you are doing well now...all the very best.

@cvcheryl57 No, I just decided that since the Doc would not authorize the Verzenio without a hormone blocker, I told her I wouldn't take it then. I decided to take a "breather" from the 2 AI's, the double Fulvestrant shots/month, and Tamoxifen pills I'd been trying sequentially for about 2 years.....so I've been without any BC meds since March. I wanted my Spring & Summer to focus on gardening, and I feel so much better.
My story is a bit weird in that I have an in-the-chest tumor that is said to be a recurrence of my BC from when I was 43. I had a mastectomy then, and 6 mo. of chemo....no cancer for the next 30 years. I also have a second type of cancer, Neuroendocrine tumors, and the monthly shots are doing a good job of keeping them in check, with little side effects the past same few years.
So I have the possible interaction of the drugs for one problem interacting with the drug for the other. I am not sure what I will do next to shrink the BC in my chest. Going to switch to another cancer center for another opinion than what I've tried already.

@jardinera25
I can understand why you want to take a break from all the meds and just feel better. I would love to do that but I’m afraid to do that. My story is similar to yours. I had a double mastectomy in 2013 for stage 1 DCIS LVI BRCA2 CHEK2 breast cancer no other treatment. In 2020 it came back in my chest wall very aggressive Ki-67 50%. Had it removed but positive margin. Had 37 radiation treatments but they missed the mark on 4 of the 9 booster treatments. Took Kisqali for 5 years along with letrozole. Kisqali caused bad afib that I now need a cardiac ablation to resolve. I stopped Kisqali 9 months ago but will stay on Letrozole for 10 years if bones hold up. I was also diagnosed with unrelated neuroendocrine cancer at the same time as the BC recurrence. Lung NETs and DIPNECH 50+ nodules involving both lungs and every lobe so can’t remove. I had had it for decades they just didn’t know what it was. I started taking monthly octreotide injections 2 months after I started Kisqali and Letrozole. All 3 meds have side effects and many similar ones so it’s like tripling down but all have done their job. I will be on octreotide indefinitely as it has slowed tumor growth and managed my severe respiratory symptoms. Hope my story helps you. What type of neuroendocrine cancer do you have?

@briarrose
I’m doing well now. Four months of Verzenio was awful. When I told my doctor’s PA that I wasn’t going to take it anymore, she said, “Well, it’s not buying you that much anyway.” I could have done without the Verzenio. Five years on an AI. Lots of side effects and a much lower quality of life. I’m done with AIs now and have been off for two weeks. I’ve been getting Signatera blood tests every three months and all twelve tests have been negative. I have Signatera tests every three months. I don’t know how much my quality of life will improve. I have refused mammograms, ultrasounds, and breast MRIs. I’m just tired of it all. I’m 80. Many blessings to all.