Starting on Verzenio

[hopeoflife]

Hello all my fellow thrivers!

After taking Piqray + monthly shots of Fulvestrant and Zoladex for more than a year, my latest pet scan revealed progression and found new mets in liver, lymph nodes and bone. Therefore, my oncologist is starting me on Verzenio 100mg next week while keeping my Fulvestrant and Zoladex monthly injections.

My body is pretty beat up by Piqray: my weight dropped below 84 pounds, lowest in 2 decades; lost appetite with bitter taste in my mouth; and elevated liver enzymes. I am extremely nervous about taking Verzenio as I heard that the side effects can be severe and hard to handle, especially for diarrhea. Has anyone had good/bad experience with Verzenio to share? I would be extremely grateful for any insights or tips that you could kindly share with me.

Thank you so much in advance for your time and advice!

April

[HelenWi]

Hi April,

I’m sorry that Piqray has been so rough on your body. I think side effects are really different for different people, so you should try not to worry ahead of time about side effects of a new drug, though we all do that anyway! (In my case, I got lung inflammation from Ibrance and no bad effects from Piqray. Totally different from most.)

Verzenio is a similar drug to Kisqali. They are both CDK4-6 inhibitors. From what I’ve heard, it’s reasonably well tolerated. But I’d ask the oncologist why they are going with another CDK4-6 inhibitor when Kisqali stopped working. I’ve read that taking a break from a CDK drug and then returning is sometimes helpful and you could benefit from Verzenio but I’d still ask them.

I understand that whenever there is progression, it’s good to test for genetic mutations, for example, using the Guardant 360 test. For example, a lot of ER+ cancers become Her2 low and are eligible for Enhertu. Or you might have developed ESR 1 mutation for which there is a recommended drug. Or you might have developed other mutations that call for specific drugs.

Here is a recent update on mbc from Dana-Farber which has a lot of good info.

youtu.be/sBMbmnRdZ74?si=aD5...(Not working as expected?)

Try not to worry about side effects, you don’t know until you try the drug. There are very many alternatives and much hope, as you can see from the video above. Also a lot of centers eg Dana Farber) now give virtual/written second opinions .

I hope that your next drug works well for you and has minimal side effects. Sending prayers and a hug.

Helen

[hopeoflife in reply to HelenWi]

Thank you so much for your words of comfort and these insights, Helen! This is greatly appreciated. 💖💖💖

My oncologist thought that I perhaps didn't have a full run on Kisqali because I was only taking tamoxifen at the time and didn't have ovarian suppression. Given my current condition, he is willing to let me try Verzenio since the other options are much stronger for me to take. We will do a pet scan after two months and see if it is working for me. If not, we will have to change to something else. I pray that my body can handle Verzenio since I am running out of oral options and the next line might be IV chemo which I desperately dreaded for. I will definitely ask my doctor about ESR1 mutation test. Thank you so much for sharing this! I hope it will give me more options.🙏🏻

[CTGirl1962 in reply to hopeoflife]

Hi April,

How are you feeling? I’m about to start on this and came across your post. I noticed it was a few months ago when you started. I hope you’re doing excellent!!!

Jody

[Nocillo]

I’ve been on Verzenio since September. I was very nervous about side effects also. For the first 8 weeks or so the fatigue was debilitating. I also felt weak besides sitting around like a vegetable. It was frustrating. Now it’s much better. Still fatigued, but similar to Ibrance now. I can do a bit more but still take very frequent breaks. I get diarrhea about once a week. I try to avoid foods I’m not used to, as sometimes that can trigger it. Some chocolate does as well. I’ve been lucky to be home so far on my diarrhea days. It’s never been bad enough to take Imodium and it’s usually only one or two bowel movements in a row and then it’s done. Good luck with it! I hope your effects are minimal!!!

[hopeoflife in reply to Nocillo]

Thank you so much for sharing your experience with me, Nocillo! I had the same debilitating fatigue when I was on Piqray. It definitely was a drag for me I am glad that your fatigue is getting better. It is a relief to know that your diarrhea is not so bad. I hope I won't get terrible diarrhea with Verzenio and it will work effectively. Thank you so much for your kind wishes!!!💕🤗

[Justme153]

Hi April I have been on Verzenio now 1month 1week. I started with loose bowels about the 3rd week in. But it has been only one time a day . I get pretty strong cramping right before so i know to get to the restroom. Im on 150mg. I also get slightly nausous off an on throughout the day. This makes it difficult to eat or drink at those times. I deffenitly am more tired. None of these are so bad that i cant forge through the day going about my daily routine. I had been on letrozole for 5 years and had no ill effects so this is a bit of a downer feeling sort of yucky all day. Maybe at 100mg you will avoid the slight yucky feeling. Good Luck I hope Verzenio is Easier on you than Piqray! I was told Piqray could be my next option if Verzenio fails. After what you say it was like I hope i dont need to go that route!!

[hopeoflife in reply to Justme153]

Thank you so much for sharing this and the tips! It is wonderful that Letrozole worked for you for five years!! I pray that Verzenio will work wonders for you and that your fatigue will get better as your body adjust to it. 🙏🏻💖

For me, Piqray is harder than Kisqali to take but it is a very effective drug. Six months into taking it, I had marked improvement on my tumors and the pain was almost gone. Unfortunately, the toxicity hit me hard and I ended up in ER twice with excruciating abdominal pain and headache, vomiting, and dangerously high blood pressure. At one point, I thought my head was going to explode! I lied in bed for 3 weeks heavily dosed with opioid pain meds. I lost a lot of weight then and was never able to regain them back after those painful episodes. I am grateful that it gave me a year. I really hope and pray that we will have some new breakthrough in these target treatments so that we can have better quality of life while battling with this hideous disease! 🙏🏻🙏🏻🙏🏻

[Tanyateresa]

Hi there, I've been on Verzenio 150 g for 3 weeks now. I felt much better at first because my lesions in the bones were making me very tired. Then about a week in, I got a bout of diarrea. Since then I have had maybe diarrea once a week- only once three times in one day and very.occasionally feel sick . The trick is really look after what you eat and not to have copious meals.Lots of fresh vegetables , and stewed apples and milk without lactose. You'll be fine just takes a bit of time to adapt. My tiredness is, better too

[hopeoflife]

Thank you so much for the diet tip and I will definitely try the stewed apples! I am so glad that you don't get bad diarrhea and your tiredness is getting better, too. I hope you will stay stable on Verzenio for a long time with minimal side effects!!! 🙏🏻💕

[Tanyateresa in reply to hopeoflife]

Thank you so much. Wishing you all the best too with minimal side effects

[Bonnie1942]

Having been on Verzenio,I strongly recommend starting on low dose and increasing as tolerated. Diarrhea can be debilitating if you experience any with a dose of more than 100 a day.