Verzenio

[Gibby21]

Can anyone tell me about Verzenio? What side effects have you had? I’m about to start next week and from what I’ve read, severe severe diarrhea is an issue along with other stomach problems and I’m wondering what I am up against. My last medicine reacted with my cholesterol medicine and I ended up having acute kidney failure and had to go through several weeks of dialysis, my kidneys came back. I’m feeling better, but I’m just curious about this medicine. I have a learning session next Tuesday but want to get a heads up on it.

[Wintervt]

Hi Gibby21,

I’ve been on Verzenio for the last year and have never had a problem with diarrhea. I do suffer from nausea but take meds to combat it.

Best,

Jade

[Gibby21 in reply to Wintervt]

Thanks Jade. I still work and I work in retail so diarrhea is a no go that helps a lot because the Internet makes it sound like everyone’s going to get that and it’s gonna be awful.

[Bettybuckets]

I have been on it for 6 months and had diahrea which wants overtime. I managed it with 1/2 tablet of immodium as I got constipated from more than that… and then that led to N&V which was the worst. But then I just drank more fluids and ate more fruit to avoid constpation and it has all faded away to be just fine. Some occasional fatigue that comes on in the afternoon which tends ti be better if I keep active like go biking or walk.

I will be sad to come off this CDK4-6 run.

[USIrishcolleen]

Hello Gibby21,

I have been on Verzenio for 19 months. After I pooped my bed, the first week, I got some disposable underwear. It turns out that I never used them! For the first 3-4 months, I had diarrhea and took 1 Imodium; I never had to take a second Imodium on the same day. My stools were quite watery, but after the period that I mentioned, I was able to control how I handled it.

As for nausea and vomiting, I did not have ANY. I have been lucky because I did not have any issues AT ALL with Ibrance for the 10 months that I was on it, before my lumpectomy, and Verzenio has not really been a problem either.

Best.

Colleen

[Julesdubai]

I experienced awful diarrhea and was house bound so I had to come off. We tried a lower dose but my body said no! I've now been on Ibrance 125, faslodex and xgeva for over 2 years and am stable with barely any side effects. Each persons experience is different. Sending positive healing vibes 💜💜

[Djd60]

Hi everyone, prayers to all of you , I am currently on Verzenio, started on my second week and last two day’s I have felt like I have the flu, I can’t even leave my house my stools are so runny , I have been taking Imodium A-D but doesn’t seem to be helping, I lost my appetite some what on this treatment, I called my Doctor and they have called me in a prescription medication, not sure I will take , after reading about that but will see, my Oncologist claim’s after a month , hopefully it should ease up but will find out, I was on Ibrance which I felt pretty good on but it caused my Wbc to be at a 1.58 to under 2.0 each month so I could never start my treatments on time till my Wbc came up some so there was a concern there so now I’m trying Verzenio, hope things get better soon., well good luck to you I pray it goes well for you !

[8576]

I am on Verzenio, 100mgs; and Tomoxifen 5 mgs. Didn't have the runs until 3 months in and then I started. I immediately took the med. Loperamide supplied by Phizer. I have to take it on a pretty steady basis but it works. Other than that I am sleeping a lot but if I am active or go for a walk it goes away.

Cheers, June S.

[Figletf]

Hello,

I take Verzenio100 twice daily plus Tamoxifen .Been on it several months but only had diarrhea the first month.

My hair is drastically thinning but I suspect that is due to Tamoxifen..since often precnanycy causes hair loIss due to loss of estrogen

Fatigue sets in late afternoon and some constipation which over-the-counter meds fix immediately.

this my fourth treatment type,I have been stable on it. I try not to listen to all the internet predicts will happen

Hope all goes well for you with Verzenio🙏🙏🙏❤️

[TNVol]

I started Verzenio 100 w/fulvestrant injections just over 2 years ago. Diarrhea was awful. Onc lowered dosage to 50 and it has been fine. Some nausea early mornings and tiredness but hey, I'm 76. Another plus Verzenio has been much kinder to my blood work than Ibrance and exemestane were. Last week everything in the normal range. Hope it goes well for you.

Manon

[Pachira]

I’m on Verzenio 100mg 2X. And Faslodex. I had to reduce from 150mg but now this dose seems to suit me better. I get constipated so take Miralax but no nausea. Due for a scan next week so I’m hoping it’s working. The doctor in Seattle that I went to for a second opinion and who recommended Verzenio instead of Ibrance told me if it gets bad stop. I did that on the 150, had a break and now things are good since I’ve started back. The immodium stopped the diarrhea in its tracks so that should help you if you’re working. Good luck! Chris

[DorothyR]

I was on Verzenio for two years. The first thing my doctor did when the diarrhea started was lower my dosage to 100mg. I also started taking immodium proactively 1/2 tablet daily. I didn't have any problems after that. My suggestio. Is to have Immodium on hand and the first sign of diarrhea take a tablet. If it continues call your doctor. You don't want to get dehydrated.

[CatLady2022]

I’ve been on a combo of verzenio/letrizole for six months. I was told in the beginning that I could expect to have diarrhea and/or constipation, so I went everywhere with a diaper. I slept with one on, I wore one to Dr appts, or anytime I left my house. I wore a diaper until about month 5. I have the diarrhea under control now because I know the warning signs (anytime I eat). So my lifestyle had to change. No more going out to eat and then going shopping. It was shopping first, then maybe a quick bite, then a rush home. I still deal with diarrhea and constipation occasionally and the first time I took Imodium for diarrhea (the prescribed dose from verzenio) I was constipated for five days so then had to take a laxative/stool softener combo to get relief. I’ve learned that the prescribed dose of Imodium is obviously too much for me so now I try and wait out the diarrhea before taking any meds for it. I don’t immediately take the Imodium if I have diarrhea because that only leads to constipation. You will learn how your body reacts to the medication and deal with its consequences as best you can. The good news is since I’ve started on this regimen my tumor marker score has gone down from 301 to the mid 80s which is awesome. I know you will figure out how to best live with this medication but in the beginning, I’m not going to sugar coat it, it may not be a walk in the park. I had nausea for about two months and one day, it just disappeared. Good luck to you and I hope you have a great experience with verzenio.

[TammyCross]

The urgency and frequency of diarrhea vary a lot, but something like 80% have some. I did, and took immodium right away, and it was quite controllable. I also took much less than oncologist recommended, and that works for me. The other thing about the diarrhea is that it does not start right away. The average is 9 days after starting, but for some people it is less, and for some it waits a month.

My problem was stomach cramps, and some nausea. I have prescription meds for both and they work. I went down to 100 mg and now am on 50 mg. The 50 mg is much better, just two bouts of diarrhea in a month, no cramps, a little nausea. The oncologist says there is not problem with taking 50 mg twice a day. I wish they had started at 50 and worked up, but that is not the protocol.

[CatLady2022 in reply to TammyCross]

I have low WBC naturally without medication so they started me on 100 mg twice daily and that’s what I’ve been on since the beginning. My WBCs have gone down somewhat but not to dangerously low levels. I do experience cramps at night which I haven’t found a cure for yet. They feel like mentrual cramps even tho I had a total hysterectomy with my first round of breast cancer in 2014.

[TammyCross in reply to CatLady2022]

I had a hard time convincing them I was having muscle cramps in my gut, not pain from gas. Then they said there was no medication for it. Silly. I was talking to the Lily Cares specialty pharmacist where I get Verzenio about side effects, and he suggested I ask about Bentyl. I did, and they virtually smacked their heads , "Why didn't I think of that?" The generic name is dicyclomine (20 mg, every 8 hours). At first, it put me to sleep. For you, if the cramps come at night, not a problem. Now it doesn't. I don't take it often, maybe once a week. - Gee, total hysterectomy. That is a lot. But it sounds like you had quite a few years before mbc.

[CatLady2022 in reply to TammyCross]

i need to look into the medication bentyl. I think my PA may have ordered this for my stomach cramps but I forgot to pick up from pharmacy. This was early in my treatment regimen so I was hesitant to take any more medication than I had to and also I hadn’t yet developed the tolerance for the meds I was taking for cancer (verzenio and letrizole). At that time, I didn’t want to add any more meds to my routine but I will now. Thanks for the reminder!!!

[TammyCross in reply to CatLady2022]

I don't think Bentyl is a big deal medication -- besides, you are now settled into a routine. When I asked the oncology practice about taking it, one of the nurse practitioners said she worked on a clinical trial and all patients were routinely prescribed Bentyl; she couldn't believe she forgot when I was begging for something for cramps.

[CTGirl1962 in reply to TammyCross]

Hi Tammy!! It’s me!!! LOL

I’m about to start Verzenio with Fulvestrant (waiting on approval). Can I ask you what you take (or took) for your tummy issues? I have a history of a sensitive gut and currently take Reglan. I don’t particularly like Zofran for nausea (it makes me light headed), but I may have to use it.

I love that all my new friends and I can be of such help to each other. It gives me hope that there are many more days ahead of support and love!!! 🙏🏻🙏🏻🙏🏻

Jody

[Gibby21]

I just want to thank everyone for their response not the news I wanted to hear but thank you for being honest. I think, honestly, I probably won’t take this medicine. The doctors job is to keep me alive. My job is to live that life and it sounds as though it’s not conducive to working, and the travel that my husband and I like to do, but I will go to the learning session on Tuesday and see what my doctor has to say thank you again!! ❤️

[TammyCross in reply to Gibby21]

Take a look at the percentage who get severe diarrhea. I think it is pretty low. Only some of us get that. Mine was just in the morning, before I left home. They recommend taking two immodium at the first sign. I took 1. I never had any incidents. I could always wait until I got somewhere where I could discreetly go to the bathroom. For me, it is working at the lowest dose. Maybe you can convince the oncologist to start you at 50 mg. Tell him if you don't get the lowest dose, you won't take it at all. QoL is important, but you are giving up without even trying it and seeing how your body responds.

But you don't trust your oncologist. Your daughter asked for Verzenio, he didn't suggest it, and now you have decided not to take it. Can you get a second opinion? I found that it helped me trust my oncologist to hear from someone at one of the national centers of excellence in my area that she would do about the same treatment with me. My oncologist and many websites recommend getting a second opinion from the beginning of mbc treatment.

[kokopelli2017 in reply to TammyCross]

hi Chris. oopsie.....I think a little mix up. it was June, who also posted, that mentioned that her daughter had asked for Verzenio. Gibby21's onc DID recommend Verzenio. just wanted to clarify😉. although 2nd opinions are always a good idea! XOXO

[CatLady2022 in reply to Gibby21]

We do short travel vacations extensively in our RV. I wouldn’t do more sightseeing trips but not because of my meds, but because I am not able to stand on my feet for long periods or walk for more than two hour stretches before I get tired. My metastasis is scattered in the bone which makes long travel (sitting in one position too long) and sightseeing almost impossible. If you’re still able to do those things, that’s great but I wouldn’t decline the meds based on what we others say. Your body may react differently and this may be the miracle drug for you and your particular case. Good luck with whatever you decide.

[8576]

Does anyone have hair loss? My hair is thinning and if it is the tamoxifen then what could I take instead? I don't trust my oncologist as he is very young and inexperienced. Actually, I am on Verzenio because my daughter asked for it. He wasn't going to suggest it.

Cheers, June S.