What are your experiences with Abemaciclib (Verzenio)?

Hey Jamie! Verzenio is a type of medicine called a CDK 4/6 inhibitor and I took a different one called Kisqali for 3 years. I had a little hair thinning and low WBC blood counts some weeks but I can honestly say I hardly knew I was on it. If you try Verzenio and are miserable you can always ask your oncologist if you could try Kisqali instead. The data is great for these medicines so my peer advice is you should at least give it a shot. I think it is important to remember that a pharmacist has to tell you ALL possible side effects but it certainly doesn’t mean all or even any will actually happen to you. Getting diagnosed with a recurrence would be a much harder life than whatever you are nervous about potentially experiencing with this medicine. Wishing you the absolute best! 💛 Suzanne (Community Moderator)

I have been on Verzenio since April. I have found it mostly tolerable. Mild Diarrhea, slight decrease in RBCs and lymphocytes, and a decrease in kidney function (which may or may not be related) are the side effects that had my doctor decrease the dosage by half. He said it will still be effective. The patient fact sheet is terrifying. I sort of wish I hadn’t read it…

There is a facebook group for Verzenio. My onco originally wanted me to take it but in March 2023 they removed the KI67 component and she felt it was no longer a drug for me. I am stage 2A with 1 positive node so it is always in the back of my mind if I should have taken it. My onco score was a 5 so I hope it is reliable.

I have been on Verzenio for about 18 months. It causes some diarrhea, especially at first, but for me, it was manageable. I take Immodium if needed and avoid over eating. I recently went on a B12 supplement to keep my red blood cell count up. Most of the time I feel pretty normal.

I’ve been struggling to regain my bone marrow ever since chemo (it’s been since December already.) the combo of Letrozole and Verzenio was the final insult, and now the oncologist is talking about a bone marrow transplant. I’m not doing it. I requested to switch to Tamoxifen, which does not cause joint pain, destroy bone marrow, or cause bone loss. There are side effects, but these are risks that could happen, not guaranteed to happen. I’m also switching from Verzenio to Lynparza, which is more tailored to my cancer, since I have the PALB2 mutation (similar mechanism to the BRCA mutation.) Lynparza has the added benefit of being less destructive to blood counts than Verzenio. Do your research and tell your oncologist what you need. Don’t be cowed into any procedures or medications that your diligent research does not support. Oncologists have lots of patients, and they tend to stay within the box of whatever the medical establishment is pushing at the time. But it’s your body and your future.

Hi ladies! Could you please do me a favor and let me know if you see a CDK 4/6 community available to you here in the app? 💛 Suzanne (Community Moderator)

I am not seeing the CDK 4/6 community.

Jamie, look up Facebook group called Verzenio

Hi everyone 👋 I was on Verzenio for about one year. The side effects I felt was being fatigued, a little diarrhea, and nausea. Because of a mutation called PIK3CA, I had to change to a medication called Truqap. This medication wasn't as aggressive compared to Verzenio. In May I was told to change treatment again. Now I'm on Enhertu and this medication causes me to lose my hair, fatigue, and difficulty breathing,and now I'm on oxygen too. 😞 But I'm still alive, so that's a good thing 😀. For a long time, I have been thinking. When I was first diagnosed, I had a 1cm big malignant tumor in my left breast, and a few lymph nodes had micro metastacies. My question is Why don't oncologist check women more regularly after being diagnosed with a malignant tumor and micro metastacies??? After I had a DMX and reconstructive surgery the treatment was Tamoxifen for four year. After I complained about back pain, my PCP ordered an MRI that revealed I had two tumors on my spine and now I have bone Mets at several locations. I was so upset 😠😭! I feel that oncologist should have watched my health closer. What do you think?

I too wonder how they are checking us annually to see if we have any cancer in our body. If they’re just doing blood work it could be pretty far along by that time figuring it out. I asked my Onc and he said vaguely blood work and symptoms. I did not have ANY symptoms with my first BC experience.

Hello Dennie When I was diagnosed the second time with MBC, my oncologist said that if all cancer was removed, they would give you the needed treatments that are for your cancer for the next five or ten years. In my case, it was Tamoxifen. My initial diagnosis was a 10mm big malignant tumor. After the mastectomy, they found a few metastasis on my lymph nodes. The doctor informed me that all of it got removed, and that was it. I had asked my oncologist after I was diagnosed with MBC why she didn't do any scans or blood work during my "recovery"? After a little over four years, I was under the impression that I was in remission. I was so upset 😡 I screamed and yelled at her. This oncologist told me that it was standard oncology practice. I didn't have any pain, problems, or other health issues, I thought, I was fine. It was my PCP who ordered an MRI that discovered I had two tumors on T9 and T12. Each mass was about two cm big, but they did not cause me to have any discomfort or pain. It is my opinion that oncologists should order at least one PET scan per year, especially if the person had a malignant tumor and metastasis in her breast. This would save a lot of money for the patients and the health care system. My current treatment costs $ 68,000 every 21 days. I think tat PET scans are a lot cheaper than treatments for MBC.

Hello Suzanne I found the group. It is on the groups at the Outcomes4me site. Look at the community site at Outcome4me, under CDK 4/6. It is a great community!

It's completely understandable to feel overwhelmed when facing a new treatment decision, especially after hearing about potential side effects from the pharmacist. Many people in this community have navigated similar feelings about starting Abemaciclib and can offer valuable insights about their real-world experiences with managing side effects and maintaining quality of life during treatment.