My question is how many of you have been on Verzenio for years? And is it possible to NOT have diarrhea on it? My doctor is replacing Ibrance with Verzenio and I am quite apprehensive about it. My doc is starting me on the lowest strength Verzenio. I was on the lowest strength Ibrance too. I am wondering why I could not increase the strength of the Ibrance from 75 to 100 mg instead of going into uncharted (for me) territory? I was doing pretty well (no side effects) on Ibrance. I hate to think of constant diarrhea. Even if the pills, which have already been sent to me, came with two boxes of anti- Diarrhea meds. I am usually regular, eat a lot of fruits an veggies and I am also very active. With Verzenio, I will probably have to cut down on the fiber to minimize the diarrhea symptoms. And will I be able to leave home without dreading an expected and sudden diarrhea attack? I don't wan to be miserable with this med.
Verzenio treatment: My question is how... - SHARE Metastatic ...
Verzenio treatment
I've been on Verzenio for 4 1/2 years. Initially I had severe constipation, of all things! I was on 3 different meds for constipation. Gradually after a couple of years I didn't need those meds. I have some diarrhea now, on some days worse than usual. You never know!
SMPG,
I was on Ibrance for 10 months before my partial mastectomy in Dec. 2020. After my radiation therapy, I was switched to Verzenio and continued with the AI, Anastrozole, as well.
I was expecting THE WORST, too, from Verzenio, but it was only the first couple of months that I had diarrhea. It was not uncontrollable, but when I felt as though a bowel movement was coming; it was in the liquid form. It wasn’t as though I couldn’t control it, and I was losing “it” all over, all the time.
My medical oncologist wants me on it for two years, which will end in Mar. 2023. I had node positive, ER positive, PR positive, HER2- bc, and not MBC. He says that there is not enough data to indicate that a patient will benefit being on Verzenio longer than two years, and he is worried about staying on it longer than two years because it can cause damage to the vital organs.
I hope this helps!
Best,
Colleen
good luck to you!
Thank you. I will bring this up with my onc. Good luck to you too
USIrishcolleen, curious if you know your Ki-67 results? My wife is scheduled for a bilateral mastectomy on Halloween. She was on Ibrance for 3 months to shrink tumors in both breasts and lymph nodes. Our ONC mentioned Verzenio for treatment after her surgery. Prior to taking Ibrance she was denied Verzenio because her Ki-67 numbers (12%). Reading the denial letter from Verzenio it stated she was denied because her Ki-67 was below 20%. I suspect she will be denied again but not sure since this is post surgery. My wife has ILC PR/ER+ HER2-
I was on the lowest dose of Verzenio (50 mg.) along with falsodex injections. I had three and a half years on it before it stopped working and I felt normal on it. I cried when I had to stop it.
kearnan,
SO nice to see that you have not left. I feel like flying out to stay with you, and help you, but my niece is intellectually handicapped, or I would.
I am fortunate (currently) to not be mbc. I initially thought that I was because I had cancer in one lymph node. I stay on this site to learn from all of the wonder ladies here.
Please stay in touch with us!
Colleen
I am on Verzenio for 8 months. I didn't have diarrhea at first and thought I was one of the lucky ones but it did start. I use the medicine they sent with the Verzenio. It is controllable, at least for me. I am not afraid to go out. I am on Tamoxifen as well. The lowest dose of 5 mgs works just as well. It has been studied.
Cheers, June S.
But wait--is the Ibrance still working? I took the stuff til it failed (a CT scan showed a few metastases on my liver). My doctor always said, "never quit a winning team"--that is, continue a medication as long as it works. If it fails, that's another story
Well, the scan discovered a spot at the back of my femur and one on a rib. So, they think Ibrance failed. But I was taking it at the lowest dose. They want me to start Verzenio at the lowest dose as well.
i started on verzenio 100 a month ago after 2-1/2 years on 75 ibrance. i take right after a meal thinking food will cushion its effect. so far no diarrhea. Only side effect so far is a slight nausea several hours after. i eat a bit of bread or banana and that quells it.
That is encouraging! Thank you. That gives me hope
Verzenio/faslodex is my second line of treatment following Ibrance/exemestane which was discontinued due to progression. I was started on 100mg but sudden explosive diarrhea became a real issue. Onc suggested trying 50mg and I've had no problems since. That was 2+ years ago. Hope it goes well for you at lower dose.
Manon
I have only been on 6 months. No problems now but the diahrea was a real thing but had to take only 1/2 an immodium pill otherwise the constipation it caused was a bigger problem than the diahrea. Now I am fine no side effects
Thank. you. What strength Verzenio are you taking?
just the top dose. 150 mg twice daily
hi. I just read a study yesterday but unfortunately did not capture the link. basically, it stated that ibrance has not shown itself to increase OS and the docs are starting to 'ditch' it. whereas Verzenio DOES increase OS and it is becoming more widely prescribed by the docs. that would be a good reason for your oncologist to switch up meds. did he explain his reasoning? XO
I am being switched to Verzenio because two spots on my bones have been discovered. So far, I have been lucky to not have progression. But, cancer is again rearing its ugly head.
fingers crossed that Verzenio stops the progression asap! best wishes.....XO
Thank you. Good luck to you too!
I remember asking my doc about this--she thought in practice there was little difference between the two, but Verzenio's known to cause diarrhea and I think your heart has to be monitored too?
there are some serious side effects listed (like with most meds) but I did not see that having to monitor your heart as one of them? it did mention blood clots, interstitial lung disease, low WBC's etc. when it came to the heart, it did mention 'a fast heartbeat' as a potential side effect so maybe that is what you were referring to? not so much as structural damage to the heart but issues with the heart rate. but diarrhea seems to be the most common side effect. XO
I was on Verzenio for 2 years.
My Oncologist started me on 150 mg and after 1 week reduced me to 100mg.
originally told me at first sign of diarrhea to take immodium. When he change my dosage he started me taking 1 immodium in the AM proactively. I changed to 1/2 pill every day and no longer had diarrhea for the time I was taking Verzenio.
Ive been on Ibrance /Fulvestrant for 3 yrs now at 75mg. My markers and scans up in the last 3 months. Dr says next step is Verzineo. But, we are trying Ibrance 100mg first. I've just begun 2nd round of IB100 so we will see.
Hi there, I was on Verzenio for six months (short time). I had progression on Ibrance/Letrozole so my doctor switched me first to Verzenio, and four months later added Faslodex. I never had any side effects at all on full strength Verzenio, no diarrhea, no nausea, I felt great on it. Unfortunately, it did not work on my cancer either. My doctor kept telling me that having no side effects didn't mean it was not working, but apparently it was not working. I just started Piqray this week...... I hope that you can move on to the higher dose of Verzenio, since it can be used as a mono therapy, I am guessing dosage matters? That's just a guess on my part. Good luck with your journey, wishing the best for you, and for all of us. Take care.
Thank you. I appreciate all who wrote to me. And good luck to all of you.
The Verzenio side effects vary from person to person, with the dose level a factor. I know a lot of people taking it who have minimal complaints, some who are successfully working full time. Unfortunately, that’s not my experience. I am on 100 2x per day since last February. I took a 2 month break as I had bad side effects. I am back on now. I take Imodium most days. The diarrhea first presents with stabbing pains in my abdomen, which cause me to literally buckle until the “contraction” passes. Ironically, I also have intermittent constipation, where occasionally I need to use a lubricant and gloves to push out the bowel movement.
The other issue I have is fatigue I have been prescribed ADHD stimulants but haven’t really taken them yet. I will be going back to work so my oncologist prescribed them.
**** There’s been “no discussion of lowering the dose.” . Verzenio — for me, but I think I am in a small minority— also causes sleep disruption (creating more fatigue). I alternate cannabis gummies and Ambien to sleep; when I take either, I get about max 4-5 hours undisturbed sleep.
I take Zofran for nausea when I need it, but most days I just chew on dried ginger. I eat a lot of carbs as they seem to make my stomach feel better. I spent my whole adult life avoiding white pasta, white bread, white rice… Now that’s all I crave… food loses its taste on this drug…. I have put on 15 pounds since February. But they did an x-ray and my colon is full with excrement from constipation (sorry for all these terrible details 🥱)They said no enemas… just Maalox. I also am on Lupron shots which can also cause weight gain.
I am sure you will be fine!!! From what I read and hear, the majority of people stabilize on Verzenio in a few months.
Best of luck,
Tara
Tara, I am sorry you go through such pains in taking Verzenio. Hopefully, the worst side effects will go away eventually. Good luck!
you are very kind. Thank you. . I hate to catalog all the sideffects as I think I am an extreme case. The drug is working. I have had 2x petscans in 7 months. So far NED. I encourage people to take it, try it 😎
hi Tara- I too had some diarhea on Verzenio but still had constipaation so bad I thought I might be dying. Thst was awful- way worse than diahrea. I fixed both problems by adding a kiwi a day to my diet. Some of my friends (also RDs) suggested that they are doing in after seeing positive results from a study with diabetics. I couldn’t believe the results as I am now much more regular and haven’t not needed miralax which I used to take daily.
Yes, I heard that a kiwi a day keeps constipation away :). Also, for diarrhea what works for me is a teaspoon of ground (unbrewed) coffee. Otherwise, I am not a coffee drinker.
thank you! I will try! Lots of vitamin C in kiwis also! I wish the line between explosive diarrhea and constipation were more clear. It’s all very confusing.🥱 what triggers what… again, verzenio can work! I hesitate to complain too much!
I do beat when I stay on top of my fluid intake and hit the fruit. Things have settled down quite a bit. But I feel exhausted in the afternoons… weirdly I do better if I go for ebike or walk than do nothing.
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