Anyone Taking Verzenio? Experiences and Side Effects

I started two weeks ago, and was similarly worried given the terrible side effects reported by many. However, recent studies (April 2024) confirm that the low dose option (50mg/twice a day) is just as effective at preventing recurrence for my stage cancer (Stage IIIa) than the original high doses tested in clinical trials, and had fewer side effects. So far, it’s been fine. I few bouts of diarrhea that have been easily addressed with OTC Imodium and one bout of nausea. No fatigue, no aches/pains, no hair loss, or anything else. I go back for my first bloodwork to see how kidneys, liver, and white blood counts are faring, but I have been pleased by how well I have been feeling. Praying you have a similarly easy journey!

I start Verzenio in a couple of weeks after I finish proton therapy. I was a little worried about the side effects too. Good luck!

I have stage IV metastatic breast cancer to bones. I was diagnosed 2 years after double mastectomy in 2020 for Invasive Lobular Carcinoma with 3 tumors in my right breast. After a radical double mastectomy with sentinal lymph removal, pathogolgy came back positive for one lymph and the back of my right breast mound so 2 weeks later had my first layer of muscle removed and my lymphs of right side. My oncologist called me while I was still in the hospital after the second surgery and said I have good news, your oncotype dx score, it's low so you're not going to have chemo, so I did not have chemotherapy, I had massive radiation to my right side. I had a delayed reconstruction. I had to wait about a year and a 1/2 for many complications to subside, and for me to get healthy, the doctor used my own body tissue and performed a deip flap. My plastic surgeon was excellent. He actually assisted my breast cancer surgeon during my first radical mastectomy, and then the revision to show her where to make incisions, so he could put me back together later on down the road.. That same plastic surgeon had also performed a lymphovenous bypass to help alleviate my lymphodema swelling. Approximately 6 months after my breast reconstruction, the backache and rib aches started, and after about the first week, my daughter said, "Nah, we're going right to the hospital. Something's not right. Sure enough, a scan revealed cancer on the bones. In my torso, in my pelvis, lumbar, my thoracic spine some of my cervical bones, my sacrum, my sternum, and my skull. I was put on a regimen of 200 mg 2x daily of Verzenio. It definitely stopped the cancer cells from duplicating. I had to go through several changes to my dosage. I'm currently on 50 twice a day, and it's still keeping the cancer from growing. l also, get a treatment once a month of 500 mg of fulvesterant, and I get monthly. Zometa treatments for my bones. I credit Verzenio with putting my cancer to sleep. The damage is done to the bones that it's in, ut right now i'm not in a growth phase and i'm very thankful for that and want to use all the years I have and all the time I have to live as healthy as possible and I thank to Verzenio and my other regiments for keeping me alive. As a side note, I follow a very low sugar, high protein diet, i start my morning with a glass of room temperature water with Celtic sea salt, another glass of water with lemon and another glass of water just plain. I drink a lot of water. Each day I flush out my system, I keep myself hydrated, and I' m, very mindful of what i'm taking into my body. I wish all of my fellow surviors the best. Many prayers and great faith are a part of my lifestyle and wellness.

I take anastrozole and then added Verzenio. I started the verzenio 100 twice a day. It was too strong. Cut it down to 50 twice a day. Couldn't take that either. I couldn't stay awake, my eyes were so dry I couldn't wear my contacts.Stomach felt awful. As soon as I stopped it my side effects went away. Now the oncologist wants me to try another pill but it has even more side effects. Also my liver, lungs and kidneys have gotten worse. I don't think I'll take anything else because of all the side effects.

I am one year and 9 months into Verzinio, 150 mg. Yes, there is occasional diarrhea and stomach cramping but manageable with Immodium. I have also experienced hair thinning. I went into this treatment with the attitude that I would do whatever my oncologist recommended to lower my chances of recurrence (stage 2B, onca score 32) and he strongly recommended Verzinio. Im 3 months I will be done!!

Check out the “Natalie trial”there is now an FDA approved alternate to Verzinio. It was just recently approved.

Jeanette B can I ask you if you had a CT scan after your first original diagnosis? Also, size and stage of tumors after surgery. Thank you!

Beth P. My 3 tumors in my right breast were 42mm 34mm 32mm plus after the dbl mastectomy my chest wall tested pos. So they scraped off my first layer of muscle tissue plus removed the lymph tree since 1 sentinal node tested positive, and they removed my expander on the right side. Since I was going to be getting radiation, they said it was going to not be a good outcome if I kept the expander in because they had to do pretty massive radiation. Keep in mind. I was diagnosed in April of 2020 but could not get the surgery until August of 2020, so I went four months waiting due to delays caused by the Covid pandemic. In October, my left expander got infected, and they had to do emergency surgery to remove that and remove more of my skin on that side.

I’m on Verzenio and haven’t had the dreaded D that much but it’s different for everyone. There is a Verzenio support group on Facebook that’s very helpful

It's completely understandable to feel concerned about potential side effects when starting a new treatment like Verzenio. Many community members here have shared their experiences with CDK4/6 inhibitors, and connecting with others who've been on similar treatment paths can provide valuable insights and reassurance as you navigate this decision with your healthcare team.