Anyone taking a CDK4/6 inhibitor?

Hello! I take Verzenio; it’s a CDK 4/6 inhibitor. “Verzenio is approved for women with HR+, HER2–, node-positive early breast cancer with a high risk of returning, as determined by a doctor, or certain types of HR+, HER2– metastatic breast cancer.” I’m the former, and I take 100mg twice a day to reduce my risk of recurrence. My oncologist is a big fan of this drug. It does cause diarrhea, but it’s easily managed with Imodium, although we did reduce my dose from 150 to 100mg because of nausea/vomiting along with diarrhea. It is obnoxiously expensive (the list price is >$15,000/month 😂), but they offer a “savings card” which magically reduces my out-of-pocket to $0. Since it sounds like you’d take it for MBC, you’d likely be on the drug indefinitely, or as long as it’s tolerated. I believe Ibrance and Kisqali are also CDK 4/6 inhibitors, but I only have experience with Verzenio. I would absolutely encourage you to give it a shot! You can always discontinue it if side effects are intolerable. Take care 🤗

I am taking verzenio 50 mg twice a day. I am able to accomplish daily activities.Even with lomotil my diarrhea was significant on higher doses. I will be on it for 2 years, Anastrozole for 10 years. My copay would be $3000 per month but I am part of a program from Lilley with no expense.

I was just diagnosed with MBC to the liver, started verzenio and anastroze feb 1st, verzenio shrunk my tumors significantly going for scan in 3 weeks. I started in 150 mg twice a day but my WBC couldn’t handle it , I’m on 100 mg twice a day doing much better with little to no side effects

@ginny100 I've been taking Kisqali (CDK 4/6 inhibitor) and Letrozole (AI) for 3+ years now due to my highly aggressive recurrent breast cancer considered stage 4. I had the chest wall tumor removed (mastectomies the first time), positive margin then radiation. They also believe cancer cells got away to other parts of my body before the surgery due to aggressive nature (Ki-67 50%), but so far so good with clear scans. Next round of CT scans in a week. My oncologist told me that Kisqali, Ibrance and Verzenio clinical trials all showed an increase in progression free survival, but only Kisqali showed an increase in overall survival time (median time nearly a year) and that is why he chose Kisqali. The one issue Kisqali has that the others don't is a risk for QT prolongation, a deadly heart rhythm, but only 4% of women get it. It happened to me immediately on 600 mg. We stopped the med, my heart rhythm returned to normal and I'm now on the 400 mg. Kisqali is very expensive. Group insurance I had was great, but once I stopped working and went on Medicare, it would have been $14000/yr. copay so I was eligible for the Novartis PANO assistance and pay zero now. No more QT prolongation, but I have had ongoing issues with afib anywhere from 1-4 times a month since I've been on it. Maybe I was prone to afib because I did have it once years earlier. The other side effects I've had with these two meds are significant fatigue, hair thinning, constipation (that greatly improved after year 1), low BP/heart rate, increased pain from my pre-existing neuropathy. Letrozole has caused joint pain and very challenging insomnia. I'm willing to tolerate the side effects because so far so good on CT scans. I plan to continue on these meds as long as they work. I had osteopenia before starting the meds. I have my two year DEXA scan due in July and hopefully the osteopenia hasn't progressed. I started a third cancer med for non-related lung NETs (neuroendocrine lung cancer) two months after these and that med also causes fatigue, hair thinning and low BP/HR so hard to break it all down by med sometimes. Prayers for your decision and success.

Thank you for your response. It is good to hear someone else's experience
with it.🙏😀

Thank you for your reply. it is good to know other people's experiences🙏😀

I had invasive dci disease with 1 lymph positive. Pet pathology report after surgery. I am estrogen positive (high) percentage of both hormones. Taking anastrozole for 5-7 years. My hematology doc wanted me to take verzenio because my tumor was 3.2 a size of grape and estrogen positive and 1 lymph. My recurrence in years was 17 percent. Taking verzenio would only increased 4 percent. Since I didn’t need chemo in the beginning because of my oncotype is at 20 and k 67 is at 10 percent thinking I am the low to medium risk because of my scoring. So I opt out the side effects for me wasn’t worth it.
I changed my diet eating more fruit and veggies and losing weight would be more beneficial than taking verzenio. My hematology doc that could be beneficial for me.
I hope I’m doing the right thing. I’m only 59 years young. Need to live for another 20 or more years. Does anyone else have the same thinking?

I have a question for those on Verzenio. Did your oncologist say why that was selected over Kisqali or Ibrance? I’m curious since it causes severe diarrhea for most and to me that is a quality of life killer. I battled diarrhea all through my 40s after taking too many antibiotics over an 18 month period or maybe due to my neuroendocrine cancer. It was miserable!!! And living on imodium caused me to have chronic diverticulitis as well. I don’t think I could tolerate that side effect again.

I have HR+HER+ breast cancer and a small PNET. I am under watch and wait for the pancreas tumor. I am on Phesgo now that I have completed HTCP chemo for 6 rounds and 5weeks of Proton radiation.
Can yo tell me what your subtype of BC is? Do you have any idea about the amount of people who have breast cancer and Neuroendocrine tumors?

Hi @vtn
I’m not sure who your question is for so I’ll respond. My BC is ER+ PR+ HER2- I don’t know about the number of people with BC and NETs but I have noticed a lot of people in this forum mention NETs and some other type of cancer. It makes you wonder if there is an unknown connection or maybe some of us are just more prone to cancers of any kind. I had NETs for about 20 years before my BC, we just didn’t know what it was yet. Prayers for you.