Verzenio and fatigue

[Nocillo]

I started Verzenio 100 mg twice a day on September 13. I’m seriously considering asking to be reduced to 50 mg. I’m so tired and listless that I feel like a vegetable. This is far more debilitating than Ibrance was. Anyone else have this severe of fatigue? Anyone on 50mg and it’s still effective?

[Bettybuckets]

Hi Nocillo- hope others will chime in cuz I don’t have good suggestions but I was on it from April till Xmas and it does get easier after awhile…some people are bothered by the GI but it was manageable.. I just rested but didn’t nap each afternoon to have energy to make dinner… I didn’t realize until after I got off it how tired the med made me… I have since been on xeloda for past 10 months… no picnic BUT… I went to oncology appt at 9am, then to the Mapporium museum,then out to lunch with friend in Boston… long drive home then dragged myself shoe shopping and a few more things.. so home at 10pm… exhausted and kind of sore and achy BUT… I never could do that on either of the CDK4-6 that I was on.. it was too much but my point is this too shall pass…. Don’t wish it to go by too fast of course but maybe the very next treatment will be less fatiguing for you… hope so.

Postcard from Boston Mapporium

[Nocillo in reply to Bettybuckets]

Thank you!

[Justme153 in reply to Bettybuckets]

Hi Betty did the verzenio make you nausous ?? If so did that stop ? And if so how long before it stopped?? Did you take them on a full stomach???

[Gonnawin]

I have been on Verzenio (2nd line of treatment) for about 5 months. I started with 150mg, my GI system couldn't handle that, so I was switched to 100mg, which I've been on now for 3 months. The tiredness got to me as well but it has since gotten steadily better. I also have started juicing more, and in particular juicing celery, carrots, one small beet and one apple seem to give me a real boost of energy. Maybe your onc can give you some ideas or others on this board too are super helpful with experiences and advice. 🌺

[Nocillo in reply to Gonnawin]

Thank you!

[Justme153 in reply to Gonnawin]

Did the pills make you nausous???

[Gonnawin in reply to Justme153]

The verzenio hasn't made me nauseous at all. The 150mg though did give me severe diarrhea. The 100mg have not had that effect.

[Justme153 in reply to Gonnawin]

How long did you take it before the diarrhea started?

[Gonnawin in reply to Justme153]

I think it was by about the 4th or 5th day. I stayed on it though because I had read others experiences that said it could take several months for the body to adjust. But I was losing weight too quickly so my onc lowered the dosage.

[ba5083]

I started at 150mg, dropped to 100mg and now on 50mg. It has helped greatly with my fatigue. I was told and have read that 50mg has the same efficacy as the 150mg. Onc said they always start with the 150mg (as they do in clinical trials | highest dosage) due to the body's response to metabolize. Some people metabolize quicker than others.

[Nocillo in reply to ba5083]

Thank you!

[RedAzalea]

Hey Nocillo,

I was on 100mg of Verzenio for a year and a half. It worked beautifully. Scans all good. . Unfortunately, I was taken off 2 months ago as the diarrhea was so severe that the Imodium and the prescription Diphenoxylate stopped being effective. That was sort of scary…. The diarrhea I had was what one gets when they might have food poisoning. The type that can end you up in the hospital for dehydration….

In all cases, I had to nap most days and my sleep was very much disrupted. I vacillated between severe constipation/swollen stomach and attacks of diarrhea, with the odd good day, sometimes 2-3 days in between.

As I am still working, for the fatigue, my oncologist gave me 5mg of Ritalin . It’s short acting and the Lowest dose. And then I got from a different doctor, time release Adderall.

PLEASE NOTE: you do not need to take these stimulants every day. They are only for fatigue. I took them on an as needed basis, a few times a month. Looking back now, I probably should’ve taken them every day, and I might’ve been more functional🤪

The stimulants enabled me to push through days that were tough at work. I have a job where I have to travel and be on my feet, a few days a month.

I very much agree with Betty that as bad as the side effects are, we have to be grateful that the drug is working. I hate to slam this drug🥱It is a miracle drug in many ways. Extending so many lives…. I am grateful for no progression on it.

THAT ALL SAID, verzenio turned me into a what I call a high functioning zombie. I am off the drug two months am only now picking up the pieces of the year plus of mismanaged finances, horrible backlog of the 1 million things in my personal life and work which were neglected, forgotten, shelved. My baseline before MBC was, I suppose, more a type A or B who never paid a bill late or failed to follow up on things.

Looking back, I have no idea what I did with my days; I lost myself. I mostly remote work (I supposedly work full time, but my output is at best “part time” /they are letting me slide for now) and throughout the work days, my bedroom was a revolving door… Yes…napping is not good. I knew I was disrupting my sleep, and making the fatigue worse. But somehow, I didn’t care; I lacked all motivation to improve anything🥲 .

***Any malaise or “lassitude,” to quote a MBC friend, you may feel is NOT depression. I’m off the drug two months, and I feel the best I’ve felt since I was diagnosed with MBC. I feel ‘almost like myself again ( Lupron and Letrozole play their roles also!)

I truly hope you can stay on this drug as long as possible. You will find your way.

My advice would be to resist the revolving bedroom door/taking naps. If I could do it all over again, I would try to prevent that slippery slope. Also, if you can exercise, it will help you so much. I was never able to rally.

Wishing you all the very best😻😻😻😻

[Justme153 in reply to RedAzalea]

Hi Redazalea do you remember about how long you where on the verzenio before you noticed the fatigue??

[RedAzalea in reply to Justme153]

Honestly, I don’t recall with precision. But I would say not immediately. Maybe 3 months in. It’s very much like a frog boiling in the water; You don’t realize the fatigue. It creeps up on you. THAT SAID, I know several people who rebounded after feeling fatigue, and were more or less normal in a few months.. YOU MAY NOT EXPERIENCE bad side effects. Many people do not. For example, I had a lot of nausea with verzenio for the first two months, and then it passed.

This is a drug that does not affect everybody the same. You really might be one of the lucky ones. Let’s be optimistic.😻😻😻😻😻

[Bettybuckets in reply to RedAzalea]

Don’t beat yourself up.. you are amazing to face full time employment and as a good employee they are appreciated of your efforts. Rest is needed to recharge…remember once you have MBC for 2 years and once you have not worked for 6months- you can apply for Social Security disability… but first you have to not work for 6months … so if you can live in savings…without income x 6 months then you are then entitled to SSDI payments…no matter what age you are if you have MBC. They allow you to file and receive as much as if you worked until full retirement age. Which is helpful since it wasn’t our fault that we can’t work until 67. Hope that was helpfu!

[RedAzalea in reply to Bettybuckets]

Betty,

Thank you for your reply and thank you for all your lovely posts and including photos for us sometimes. You are a huge inspiration for this entire platform.

Thank you for the disability information. I am in a situation where I have to work until I can’t… The money from disability wouldn’t be enough to cover my expenses in New York City as a single person. . Thank God, my shitty job is letting me slide. I only work the equivalent of “part time” compared to what my output once was…. That said, I have to be engaged every morning with them in video meetings. But I do a lot remote. Little in person. I am starting Kisqali after thanksgiving. . I hope this doesn’t make me too immunocompromised as I have to travel with some frequency..”Scan by Scan…”

I Hope so much you are stable on your current drug Lobular is a tricky one to treat. I am in awe of how well you have done these past years

We love you😻😻😻😻

Tara

[TammyCross]

As Red Azalea indicated, in addition to the fatigue, I had a sort of lack of will. I wasn't able to get things done. When I was on 150, then 100mg, I spent way too much time napping, and still usually slept through the night. I cut my exercise in half, just wasn't able to get going every day.

I went down to the lowest dose. My oncologist believes it is just as effective as the highest dose. It was a little better, maybe quite a bit better, but only now, when I have been off it for two months, have I picked up the pieces of the things I should have done last year.

I had mixed feelings the whole time: I wanted to go on something else that was not so debilitating, but I also wanted it to continue working. I got the first wish, but not the second. It never made me NEAD, as the previous two treatments had, only stable, then after about a year, a PET/CT showed three tumors, two new, one just larger.

So that is my experience. My oncologist doesn't deal with side effects, so I went to palliative care. They were reluctant to prescribe Ritalin or Adderal. From the beginning, I have been on buproprion (Wellbutrin) to combat fatigue. That worked with Ibrance, but Verzenio was too much for it. Bottom line: I guess hope it works for you in terms of stopping progression, go on the lowest dose, and see what you can do or what meds they can give you to mitigate the fatigue.

[Ycats277 in reply to TammyCross]

Thanks so much 🩷

[Ycats277]

I have been on Verzenio for five years , and tired for five years I started at 150 mg and reduced to 100. I’m also slightly anemic which they can’t seem to get adjusted. I take iron capsules. I’m exhausted all the time. My eyes tear profusely, which make me feel even more tired and weepy. Then there are the mean people that say feel lucky that you’re alive.!!!! REALLY FU. I go once a month for faslodex injections, and a shot in my arm of the Xgeva for the bones. I feel horrible all the time I have no idea what all my side effects come from.. I hope this helps. You can ask me anything.❤️

[TammyCross in reply to Ycats277]

Runny eyes and fatigue are both from Verzenio, not fulvestrant or Xgeva. The weeping is a pain. No, not that lucky! Hope you can go down to 50 or try something else. My onc. would never keep me on anything that made me feel that bad. There are alternatives.

[KitKatio in reply to Ycats277]

Hi! I’ve been on Verzenio and Faslodex for 2 years. I started at 150, went to 100 and now 50. I’m NEAD right now and hope that continues, My eyes water all the time, too! No one ever said it was the Verzenio causing it. I still have diarrhea but not as severe or frequent. The fatigue can be awful too. But I’m grateful that the combo is working.

[Ycats277 in reply to KitKatio]

Me too , I am on this now since 2018 so five years a Mom Versenio with the watery eyes for the first three years I had diarrhea on and off. I also took off 70 pounds, which I love. It stopped I weigh 166 yay. I’m exhausted all the time I can’t make dinner and then serve dinner and do the dishes. Period I’m not the person I used to be. But I have to be grateful. I’m alive, right the eyes bothers me the worse. The diarrhea went away completely. I am now drinking tons of water seeing if maybe the dehydration is what’s causing the eyes. My hair is like straw. And curly. I never had curly frizzy hair. And it’s sparse. I called Versenio the ugly drug.

[Nocillo in reply to Ycats277]

Ditto here. Can barely make dinner and that’s not every day. Frizzy, curly hair, but only curly in the back. Haven’t lost any weight. Look like a weirdo in pictures. I’m so white I look like a ghost.

[Ycats277 in reply to Nocillo]

Me too , we all become sisters here because of the common sides . ❤️🩷😊

[luckysmom13 in reply to Ycats277]

I also have the frizzy wavy hair, mostly on the sides! I straighten it sometimes, which looks so much better. My eyes water too, which I never attributed to the Verzenio.

As Red Azalea said, it's like being a high functioning zombie, but with frizzy hair and weeping eyes! 😆

[Pachira]

I started on 150 mg but couldn’t tolerate it. They reduced it to 100mg and I’ve been feeling pretty good. I have Faslodex shots once a month and a few of my problems disappeared after I stopped Xgeva. Sometimes I feel like a short nap in the afternoon and if I do then I take it otherwise I try to decide what I want to achieve in a day and just get it done. I’m 74 and retired so that makes life easier. I asked my Onc about reducing to 50 mg and he said he’d think about it. I know as I don’t appear to have too many s/e’s he’ll not do it. I’ve recently been diagnosed with Asthma/Bronchiectasis and Mac so any of those most probably cause fatigue too. This is my second line of treatment which I’ve been on a year so tms now dropped to 117. I hope I get another year or more before I have to switch. I believe if your body needs rest then it does no harm to listen to it. Good luck Chris Xx

[luckysmom13]

I've been on Verzenio for 5 1/2 years and it causes significant fatigue. I was on 150mg twice a day, and then recently dropped to 100mg twice a day due to neutropenia. I feel a little less fatigue on the 100mg, and it is still working well. I put up with it since I've been stable the whole time on it.

I also take Ritalin to help with the fatigue, and it really helps a lot! I can actually get some things done at home and run errands when I need to.

[Ycats277 in reply to luckysmom13]

What is Ritalin ?

[luckysmom13 in reply to Ycats277]

It's a stimulant used for ADD/ADHD that also helps with cancer-related fatigue or sleep apnea fatigue. It really helps my fatigue.

[Ycats277 in reply to luckysmom13]

I’m afraid lol 😂

[TammyCross in reply to Ycats277]

Me, too. About half the kids in the US are on it -- I shouldn't be so snide, some really need it to function. College students use it when papers are due or for finals week...It is a narcotic and that scared me off.

[kokopelli2017 in reply to luckysmom13]

hi. that's wonderful that the Ritilan gives you a reprieve from fatigue! I too suffer from relentless fatigue. unfortunately though, I've tried Ritilan twice now and it appears that it doesn't work for me. it almost makes me feel more tired...as though I am having a paradoxical effect? I have that problem with Benadryl. whereas with most people, it makes them very sleepy. but for me, I become agitated and paranoid.

or maybe I need a dose adjustment? do you mind me asking what dose you are taking? I really want this to work for me🤞

best wishes and enjoy those 'bursts of energy'😊

carole💛

[luckysmom13 in reply to kokopelli2017]

I will PM you!

[kokopelli2017 in reply to luckysmom13]

thank you!

[Djd60]

I was on 100 mg of Verzenio, never lowered my dosage, asked my Oncologist to put me back on the Ibrance 75 mg which he did after I was so exhausted I couldn’t get out of bed except to grab food and run to the bathroom 24/7 with none stop diarrhea and dehydration issues, the only treatment I have really been able to tolerate was the Ibrance low dosage of 75 mg, the Mayo Clinic suggested I switch to the Verzenio that the side effects were less, but that wasn’t the case for me, I couldn’t even make it out to any Doctor appointments it was so bad, I am currently back on the Ibrance 75 mg, now I get this letter from Pfizer manufacturer changing there policy’s for 2024 on there qualifications for help with there medication, I am praying I am not denied help because these pills are so expensive and unaffordable for people to afford to pay even with insurance now , not sure what these manufacturers want people to do when there sick and need help with these unaffordable treatments on some cancer drugs , well good luck and I am praying for you and all others with this disease, we are one big family in this fight together to beat this horrible disease that take so many of our love ones 🙏

[TammyCross in reply to Djd60]

Weird that Mayo said that. It seems wrong from my experience and everyone else who is responding here. So odd.

[Djd60 in reply to TammyCross]

I was seeing an Oncologist at the Mayo Clinic and a local Oncologist in my area , who I have been seeing since 2010,, went to get another opinion on my treatment’s and they have been working with my local Oncologists at times on my treatments when having issues with certain side effect’s, making suggestions on trying other treatments to see if it would respond better then current treatments, some things they have helped out other’s not so much , but the Oncologists at the Mayo Clinic I was really impressed over her knowledge but it is so far for me to travel to on a monthly basis or more so I continue to see my local Oncologists, but If I feel the need for another opinion when something feels off then I contact her again !

[kellylinkane]

i am on 100mg verzenio about 2 years shouldnt make you very fatique i just need to take a hour nap afternoon otherwise energy is stable.

[CTGirl1962]

Hi!!! How are you feeling now? Are you still taking the Verzenio? Have your side effects gotten better?

I’m going to be starting on it and I’m just curious. 🩷🙏🏻🙏🏻🙏🏻

Thank you for your response.

Jody