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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@tbos805 I was in so much agony last week, I considered giving up on it, but youve given me encouragement to hang in there, and hope that my stomach can overcome the side effects. Im still on my break to allow my bloodwork improve and your patience has made me realise I cant give up too soon. I hope i can steel myself. Ive been so scared of taking the pills without food because I had serious GI issues during ibrance and throughout my surgery convalescence, even before I started Verzenio. Im still scared but Ill give it try to see if it helps with the current side effects.
I am also non dairy, nuts, legumes and shellfish but can handle gluten in small doses. All of those give me a bad reaction. My diet is actually very healthy. Im also doing the usual Calcium and a small dose of D3 in addition to meds for my comobidities (hypertension, asthma and cholesterol), so scheduling all those to minimise interactions is like writing an academic paper 🙈🙈!!
@eddiej, Welcome to the thread, and thank you for the prayers.
@kathrynw1thasea, Ive saved your tip on Immodium with the Verzenio for when the diarrhea hits. So far my problem is abdominal pain 😢.
@kotchaj, interesting about your extra precautions...., i started wearing a sanitary pad when I go out..., just in case. And yes, that magic pill is called "immodium-plus". Its like a combined Gas-x +Immodium. I wonder if it will help my abdominal pain 🤔🤔 I might give it a try when I resume my Verzenio.
@threetree, im on 150mg. My MO said its early days so we need to give the 150mg at least another cycle before dropping the dose. I hope the 100mg will give me relief from low ANC. I live in fear of Neutropenic infections.
Wish you all a lovely weekend. Love and hugs 🫂 ❤️🙏🏻
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Hi again, @Rosebessie - I know that agony!! Doubled-over, crying pain at 2 AM!! We do have similar diets and my cancer physiatrist instructed me that I need to get at LEAST 20+ g protein 3x day - anything less does not activate muscle protein biosynthesis - so that is really my biggest challenge now because with all my restrictions, it is a lot of meat. I have my phone alarms going off several times a day for pills and snacks and medications 😂. I mentioned my 10 AM protein smoothie or protein bar: I use OWYN protein shakes (no chemicals, additives, or allergens) blended with spinach, hemp seeds, banana, frozen fruit, etc., or if I am not home, a 20 g protein bar. As for the cramping, Imodium used to help but then I would be constipated for 5-6 days and have that pain. I found that a 4 mg Ondansetron dissolvable helps just as well without the many days of constipation. My onco started me on 100 mg Verzenio knowing I am the queen of side effects and kept me on it, saying the research showed it was just as effective as 150 mg. Lastly, hot epsom salts baths!!! I use 3 cups in hot water to ease and melt away all the pain, fears, and anxieties. At least 3x a week! Addicted! Just adding a few more thoughts as the more you mention you are dealing with, the more I am reminded of! I decided I have had to stop fighting it and realize I am adjusting to a WHOLE NEW BODY which took many months and tears and trials, and it has been ongoing. That realization helped when new issues arose as I knew I could get through it, such as currently trying to heal and manage a sacral fracture (non-cancer-related) which can take a year. You can do it!! Peace and healing thoughts for you all.
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@tbos805 thank you so much for sharing your Verzenio journey and management. You've given me some good tips which i shall experiment with as i try to find my balance. As you so accurately point out, the main challenge is guiding our bodies so they can adjust to the drug. The drug sure won't adjust or make allowances for us. I restart it Tuesday so im all anxious while trying not to be. Prayers.…🙏🏻🙏🏻 I shall update. Love and hugs 🫂 ❤️
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@Rosebessie Good luck with your restart! I think you are in a much better place mentally and knowledge wise (I am too!)! I just know it will be a better ride!! 🫶 Loved your comment about scheduling all the meds feels like you are writing an academic paper. ” 😂 I remember writing those papers (no AI, no computers or Google… just a typewriter and books at the library!!), I got a good laugh and a bit PTSD 🤣
! @tbos805 @kathrynw1thasea @kotchaj @threetree Your posts have been absolutely invaluable!!! I already have the Imodium Plus on order and will be asking for an Ondansetron script to have in the house just in case.
I decided on a 9:30 schedule each day - I am not good with sticking to a schedule (I tend to forget/ignore if I am having to good a time 🥳) so my DH will have his phone alarm on and I have 2 girlfriends who said that even if we are not together, they will put the evening alarm on their phones too. It takes a village!! And no food with the pills!
You all are part of my village too! Hugs to you all! My last week of zero Gastro issues is here and I have lots of plans as well as throwing a July 4th party! 🎉 Hope you all have a fun, comfortable, calm and pain free week! xo juliana4 -
@eddiej @Rosebessie - I too really liked Rosebessie's comment about the academic paper feel that comes with scheduling all the meds, etc. Like Eddiej, I wrote a lot of those papers too, with just a typewriter and books - had to make room for all those footnotes at the bottom too, and if you guessed the space incorrectly, you had to type the whole page all over again!
Good Sunday morning and good wishes for all.
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@threetree YUP! 😂😂😂
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@eddiej , I hope your academic paper🤣 went well . I borrowed your tip on setting alarms for my meds and its been a huge help. Now I take my Verzenio exactly 12 hours apart. I'm so glad for you that your friends love you enough to set up alarms to also remind you to take your meds on time. That's admirable. My friends started off well when I was diagnosed in 2020-December. But some started pstronising me and being very condescending because they were doing me a favour. It depreseed and frustrated me. Others gradually dropped off, most likely got tired of doing stuff for me. That's coz most people think cancer is about chemotherapy, radiotherapy and then you're cured or yoi die. They don't understand that MBC aka Stage 4 treatment is for life and can go on for years. Now im doing everything solo 😭😢 although id really appreciate someone being close, helping and/or giving me practical support. My family simply dont care. No support at all. Im not on a pity party. Just emphasising how lucky you are
@threetree LOL!!! Those academic papers can get demanding....right 🤣🤣.
In other news... Ive now developed a good schedule complete with alarms. Im on 8am, 8pm Verzenio schedule and the rest of my meds fit in around that. It's a work-in-progress so fingers crossed 🤞 . Ive been taking my Verzenio with a slice of bread but this morning I took it solo and immediately followed it with Gas-x. So far no diarrhoea, just slight nausea but not bad enough yo warrant Zohran. And, I'm still carrying the Immodium im my bag just in case. Also, the cramps from last cycle seem to have given me a break. Permanently, I hope 🙏🏻!!. Last week's Faslodex shot after effects was also different. I took a walk when I got back home from hospital. First night was painful so i made many trips to the fridge to freeze my icepack. After thst it was very bearable. 6 days later and I'm still doing the ice pack but its all good. I go out for hours in between. So, the 125mg isn't too bad after all. Wishing you all a lovely day.
Big hugs 🫂 🤗 ❤️
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@Rosebessie Please know I truly feel blessed with my family and friends and I hope you find the support you need real soon. There are zoom support groups held weekly on this forum. Maybe you can look into those! I haven’t yet but I know I will eventually. @moderators can you tell Rosebessie about the zoom support group meetings please! I am happy to hear you seem to be doing well with the changes you made - may it continue a long long time!
All, I started the Verzenio yesterday- no food, 12 hrs apart and staying away from high FODMAP foods. First day is just fine! 🥳 Just took my pill again, praying I feel good today too. However, new DNA test results came thru last night and I got a call this morning from my MO’s office to schedule a telehealth call with me this afternoon to discuss them. It appears I have 3 mutations - low volume tho - that have targeted therapies available. Enhertu, Truqap and Afinitor.
I have a strange feeling I may be off Verzenio before I’m really on it. I’ll be in touch 🤷♀️🤔3 -
Hi gals, well, I have enjoyed my time here but I am being switched to Truqap once it gets shipped to me (🤷♀️next week?). Ive been on Verzenio since Monday and have been having a lot easier time with it than expected. I am on the 100 msg a day so that helps I think. My MO wants to target my mutations so even tho I started Verzenio, he is switching me. It’s amazing to me that he got prior authorization in a day considering I just started Verzenio. I take that as a good omen that this is the right move. I didn’t ask this, but if Truqap doesn’t work for me, I imagine Verzenio is a back pocket med. Hopefully I won’t have to think about this for a long time.
I wish you all an easy and long time with your Verzenio treatment. I will be around so if I can ever be of any help or support, please do not hesitate to reach out!
Take care!! xoxojuliana3 -
@eddiej - Wow, that does sound quick, and when you weren't really having trouble with the Verzenio either. I imagine that of course, your doctor knows what he's doing, but it does sound a bit out of the ordinary (what would I know?). I hope that the new treatment (Truqap) works really well for you. Fingers crossed 🤞and sending many, many good wishes your way for a big, long success with this!
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Verzenio is going to be my new treatment—- I start tomorrow. How are the side effects? I am starting out at 100mg twice a day. I requested that.
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