Abemaciclib Verzenio for Stage IV
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@eleanora I wouldn’t assume that you will have the worst of the side effects. There are plenty of ladies who don’t. They just don’t tend to tell their stories or seek solace from those that do. I know a few. Plus, you can always inquire about a drug vacation. I took a 3 week European bucket list vacation minus letrozole and started to feel fabulous mid-week two. I was already off Verzenio at the time, but in hindsight I might have been able to lower the dose and been just as successful at controlling the Verzenio side effects. You could ask about dropping down to 50mg of Verzenio for a week or so.
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great advice! Thanks . Not really thinking rationally right now.
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@eleanora - I don't know that you need to rule out traveling. Everyone is different, but I've been on Verzenio since 2020, and I still travel. I've had to pass on some things - like the three hour boat tour of Lake Havasu. That was when I was 150mg, and even if there was a bathroomon the boat, I wouldn't have been comfortable. . I've made several cross-country driving trips, cruises, and domestic flights. We keep our driving days fairly short, and my hubby knows we may needed to stop more than once. I have a better idea of how I eat (what, when, and how much) affects me, and I use immodium profalactally for longer days or when I have less control over the schedule.
Hopefully, you'll figure out what works for you and still be comfortable doing what you want to do.
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Thank you for the practical tips and the hope!
I received my last scan report today (brain MRI). Fortunately, brain is clear. Only issue seems to be a 5mm met on the bone on the left side of C1. Nuclear bone scan showed some activity in formerly sclerotic mets in the left femur near the hip. Not qualified to diagnose myself, but feeling a little upbeat that I still seem to be bone only.
Not looking forward to MO appointment tomorrow. She is a "glass half empty" type. In the process of obtaining a second opinion from Johns Hopkins.
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Hi all,
Im new new here because im new on Verzenio since 2 weeks ago. Honestly, this isn't working for me. The past 2 weeks have been absolute torture, and the pain on my RHS is unbearable. I see my oncologist today, a week early, because i need to review this treatment. Im guessing the RHS pain is my liver in distress, and theres also upper abdominal pain. Its unbearable. Will update later. Sending you all love, hugs and wishing you a pain free day/night.
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zofran can help with the nausea. Gas-x can help with cramps, and Imodium helps with diarrhea. Taking pills exactly 12 hours apart makes a surprising difference as well.
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@Rosebessie - So sorry you are having so much difficulty with the drug. I'm not on it now, but got about 2.75 years from it. I didn't have too much digestive trouble, and I've always thought it had a lot to do with the fact that I ate probiotic plain Greek yogurt everyday. I also had a serving of fresh (from natural food store, not off the shelf from a regular grocery store) probiotic sauerkraut every day. The sauerkraut has to be refrigerated, so none of the canned stuff will work, and some of the refrigerated sauerkraut doesn't work either. It has to be fresh, unpasteurized, and refrigerated.
I'm on Xeloda now (since January 2026), and it too is notorious for stomach/digestive problems (nausea, vomiting, diarrhea, etc), and once again, I seem to have been spared, and once again, I have a feeling that it's my daily probiotic plain Greek yogurt, and the fresh refrigerated probiotic sauerkraut that are making the difference.
Just my two cents here. I wish you a lot of luck with the Verzenio. It did real well for me for quite awhile, and I know it has for others too. Don't give up too soon. Fingers crossed that you will find a solution and have a good long run with the Verzenio!
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@kathrynw1thasea Ive been looking for the Gas-x, still haven't found it or an alternative. Immodium is on my meds list to keep on hand for that moment because so far diarrhoea hasnt hit. Just the abdominal pain. My big challenge is maintaining a strict the 12 hour medication schedule due to morning fatigue. But im working on it. .@threetree Sadly, yoghurt, sauerkraut or any unpasteurised foods are off the table for me right now coz of my low ANC. Risk of bacterial infection is scary. Ive also been dairy free due to gut imbalance. Thank you for your positive words of encouragement. I sure hope this goes well.
Meanwhile, my Absolute Neutrophils was 0.9, and with my history of infections, plus a stomach bubbling and cramping from the Verzenio effects, my oncologist put me on prophylactic antibiotics for a few days. So im on a brief break. I hope this wont be a frequent experience. With Ibrance it was like monthly. And LOL!! Im spending so much time in the washroom.🙈🙈...thanks to the many glasses of water im drinking.
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@Rosebessie also look for Phazyme, Wind-Eze, and Disflatyl which Google says should be available where you are
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@seeq thanks. I was just googling as well. Ill check them out. Big hugs 🫂
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@Rosebessie Sorry to hear about your abdominal troubles. I had severe cramps and pain and diarrhea for the first six months last year, thinking I just can't do this and certainly never travel, until I read somewhere on this forum that someone tried skipping breakfast and it made a huge difference. I could not believe it but tried it (having always eaten a good breakfast every day) and it worked!! OMG!!! I just have a banana around 7 AM when I take my multivitamin, my Verzenio 100 mg dose is 8 AM, a protein smoothie or protein bar at 10, and lunch at 12:30 or 1! Dinner at 6;30 nothing else till my 8 PM Verzenio dose. Voila!!! I hope you don't have to suffer as long as I did and I hope it helps. Good luck!!
P.S. I should also mention that I am no-gluten, dairy, nuts, legumes, sugar…and in the last year I have developed an intolerance to shrimp so I won't try any other shellfish!
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Hi all, I have been reading this thread and have learned much ahead of time! I am starting Verzenio after July 4th weekend. My MO agreed to start me on 100 mgs. - thank you all for that advice! We will reassess the dosage after my next scans in 2 months - if no progression, I will stay on this dosage. Pray I respond well!
I will take @tbos805 recommendations to not eat with the pills. Thank you! . I have a few question for all my sisters on this thread - hi @threetree @eleanora !Do I need to restrict my diet? I have not restricted my diet and didn’t have to while on Kisqali. I’m thinking to take a wait and see approach - praying I dont need to. Any clear diet recs? I’m already on the Greek yogurt daily with a daily probiotic. Not sure I can do the sauerkraut but will try if I am in bad shape.
When do you take Imodium- before the morning pill or after? Or only if I get bad diarrhea?
Does caffeinated coffee cause issues? I’ll go decaf if necessary- recs?@Rosebessie I hope you find some relief! Keeping good thoughts!!
Thank you all for your help, support and guidance! I was so happy to find this thread. So appreciate your advice 😘xo juliana
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Hi @eddiej,
When I first started taking Verzenio, I needed to take two Imodium twice a day every day as a preventative measure. Once my dose was reduced to 100mg and I tried the strict 12 hour schedule that began to change. I noticed very quickly that my need for the Imodium was reduced. I dropped down to one capsule twice a day and eventually only as needed. I always took it with my Verzenio on the same 12-hour schedule.
I hope you are doing better and feeling stronger.
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Hi all, they make a multi symptom Imodium which is an over-the-counter medication for the diarrhea, gas, bloating, cramps and the abdominal pressure. This was a game changer for me when I took Verzenio. I really struggled when I first began taking it, but this medication made it more than tolerable. I also kept a "kit" with me at all times of extra underwear, wipes, as a just in case. I think I had to use that once, but just knowing I had a backup, helped me not worry so much about anything happening. I even went so far as to bring in an extra set of pants to work. The peace of mind in knowing I had some back up items, really helped me mentally with it.
I'm also that cup half full person. I kept focusing on the fact that I can do hard things today. One day at a time. Then I was able to push it out to a week, etc. Sending you all big hugs.
Amanda
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@Rosebessie - Rosebessie, what dose are you on? Things got a lot better for me when I went from 150 to 100, after about 6 months. My main problem was fatigue though, not necessarily the digestive stuff, although I had some erratic, but not extreme, issues in that regard. If you are on the higher dose, you might give some thought to trying the lower dose at some point. It's probably good to at least give the higher dose a try for awhile, but I think most do better with 100. (Just some morning random thoughts here, but hope they are helpful.)
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