Abemaciclib Verzenio for Stage IV
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ReneV, Thanks for the Metamucil tip. I think it's going to help. At first I was thinking, I don't have it that bad and it's not really causing a problem. Then it occurred to me that's partly because I rarely leave the house! (COVID has been hot around here.) The urgency is the killer. I was trying to manage it with Immodium, but hadn't found the right dose/timing to do the job *without* serious cramping.
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Hi SeeQ. Welcome to the verzenio thread. Saw fom another thread you were recently diagnosed. So sorry, but welcime. Verzenio is great because it's oral and many people respond and can have deep and long responses. However, the SEs are something many people have to figure out how best to deal with, so feel free to ask anything because everyone here is willing to offer advice and experience to help.
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Thanks, HopeandGratitude, I'm hoping for long and successful treatment with Verzenio, but I guess we all are. I'll feel better when I know it's actually working - said by every person on a new treatment ever, I'm sure.
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Well, scan results show liver mets are growing, so have had to make that decision. I will be joining you ladies on this medication.
Based on what you've posted, I'm trying to put together a "starter pack" so any recommendations besides metamucil and a mattress pad? I have those on the list.
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Terri-c: I have posted this before and it's well worth it to give you comfort! Get a bidet toilet seat!!! They are not that expensive and easy to install. There are cheaper ones than the one I bought but you won't be sorry. Gentle on the tush!!! I had terrible diarrhea on150 that didn't really hit me hard (after my initial introduction to verzenio) until months later, I was on Imodium and lomotil at max doses By this point and they could not control. Lost weight fast and almost ended up in hospital. Too toxic for me. Switched to 100mg and so much better. Used Imodium still until I faithfully starting using Metamucil. It changed my life. I don't have to worry anymore when I leave the house and I can eat a varied diet, so lucky. On occasion I have taken an Imodium when needed, but only 1!!! I feel Human again. Now I pray this verzenio keeps working! For all of us
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H&G, I was going to check in with you to see how it is going with the Metamucil. You've convinced me to give it a try, particularly given that I had a nightmare walk with the dog last night. Poor Sadie... I got quite cross with her as she's a bit of a princess and stops dead if she gets anything on her fur. I kept tugging saying we need to get home NOW! Cramps were unreal. Thankfully I made it but it was tense to say the least.
Terri-c, sorry to hear about the progression. In terms of things to have on hand, the advice laid out by Zarovka in the original post is sound. It usually takes about a week before diarrhea becomes an issue and for some, myself included, it was not a huge problem in the early months. I had more trouble with the taste changes, mouth issues and nausea when I was on a high dose. It made it hard to eat and drink which is clearly not sustainable so I dropped the dosage. That was very helpful - the lesson is that dose reductions can be very effective at diminishing the SEs so don't hesitate if you are struggling. We're here if you have any questions.
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Has anyone had a problem with neutropenia on Verzenio? I've been on it 25 months, and this has started recently. My neutrophils were .9 last week and .8 today. No Verzenio for two weeks or until counts come up. (Makes me feel unprotected.) Scan scheduled for Tuesday to see if something's going on. UGH!! Liver functions are normal, no bone pain, and nothing unusual detected with palpation. ??? Any ideas from your experience? Thanks!`
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Terri-c, I'm sorry to hear of your grwoing liver mets. The "starter pack" from the pharmacy included THREE boxes of generic Immodium. I knew that was a bad sign. LOL
I decided to try just 1 tsp of metamucil a day, and it helped some, but I'm going to need to go to twice a day. Gas-x helped with the major cramping.
One of the things my MO mentioned is that the liquid immodium allows for more flexibility in dosing. I was trying a preventive dose of 1 per day, which caused major cramping, and 1/2 per day, which was not enough to make a difference. I'm hoping the metamucil makes that a moot point.
Minor vent - the boxes of generic immodium had pills in blister packs that require SCISSORS to get into. Really?!! It was inconvenient at home, but when I was out ...?! It was next to impossible to get into. And that's not exactly something you want to ask for help with. LOL WTH were they thinking??? So, today I went out an bought myself a tiny pocket knive with tiny scissors on one side. LOL -- Vent over.
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See-Q and Terri-c - Like Rene- I take Metamucil twice per day faithfully, after breakfast and after dinner. I also take closer to a tablespoon than a teaspoon. Took a few days and I could feel my body adjusting. Have now been on it for weeks and I am so much more back to “normal”. Not 100% and obviously my stool is different than “normal”, but I am going at regular intervals and no more watery diarrhea. A couple times I had to go with more frequency and it started getting looser, I took ONE Imodium and it resolved. I went almost a year fighting the diarrhea with a combination of Imodium and lomotil and it was hellacious. Even when I dropped the dose I was much better but still needed more Imodium than I wanted to take and couldn’t regulate it. Always a guessing game. The Metamucil really helped me regulate it. I am sure it won’t work for everyone but I am super happy I gave it a try.
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I was just about to start my seventh round of Ibrance when my oncologist cut me off. My white blood count has been at 2.2 or so even with Ibrance at 75 mg. So next Wednesday I begin Verzenio.
I felt bad about giving up on Ibrance as I knew most women take it for 2-3 years before it stops working. I am de novo, getting my diagnosis in February. The P.A. accidentally didn't read the initial bone scan results carefully so I have ONE round of chemo and lost all of my hair. Now I laugh at this mistake and say it will become the new protocal.
I hope that Verzenio will keep the 6 mets I have in my bones at bay. My last bone scan was much lighter than the initial one, so something is working! I think the worst part of this experience has been that I retired and moved to the woods of Washington in October, and found the lump in my breast in January. Not much of a retirement.
I was able to get some help on the cost of Verzenio through the Verzenio (abemaciclib) Savings Card.If you need help, the maker of the product, Lily, might pay your co-pay. It takes about 30 minutes of listening to everything and saying, "Yes." Here is the phone number to call: 1-844-VERZENIO (1-844-837-9364) Mon-Fri, 8am-10pm EST.
Thank you for welcoming to your group. Let us all stay well and hopeful.
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welcome woodlands! My story is similar. I retired Feb 1 2019 and found out in Mid March 2019 that my “local recurrence” in 2018 actually had gone metastatic after all those treatments and radiation, to my liver. Was on Palbociclib but had too much trouble with ANC recovery so switched to verzenio after almost 7 months. Have been on verzenio about 10 and pray everyday it keeps working (although I have mets to bone now too). Side effects are very different and many people on this site have had a lot of experience. Feel free to look back on posts and ask away any questions you might have. Good group of people here
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Welcome, Woodlands. I hope the Verzenio works out better for you. You have a really positive outlook about your 'accidental' chemo. I'm not sure I could keep my sense of humor.
HopeandGratitude, You're right, of course, about the Metamucil. I just figured I didn't have as much trouble as some, so I was thinking maybe I didn't need so much to offset it - and I was really trying to avoid the crampiness from overcompensating. I'm going to start twice a day and hope that knocks it out.
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I bought a mattress pad in anticipation of diarrhea issues once I begin Verzenio this week. What about a diaper just in case I need it? What brand do you buy? I was given some anti nausea pills when I had that one round of chemo. Would that work, or do you have a favorite pill to take? We live in Washington, so my husband was thinking that CBD without THC might help. Has anyone tried that?
Ibrance had no side effects except for the need for a 2 hour nap every afternoon. I have to admit that I am scared of the side effects of Verzenio. I read that Day 6 is when the se kick in. I really am aware that I have cancer because of Verzenio. With Ibrance/Letrozole I could forget. I could go on two walks a day. I forgot about my diagnosis sometimes. I read up on neutrophils. Mine are really low along with a low white blood cell count, so that's why my oncologist pulled me off of Ibrance after trying lowering the dosage two different times. I know Verzenio doesn't improve the wbc, but I read that the neutrophils go up. My tumor markers are in the 20s, so that is not my problem.
My oncologist has started me on 125 mg for Verzenio. I will see her the end of the month to see how my bone scan and MRI for breasts looks. I will hang in there until then. Wish me luck!0 -
reducing tp 100 twice a day made a big difference for me. And no progression as a result
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Hi Woodlands. Please keep in mind that not everyone has major problems with diarrhea and as you are well aware, the diarrhea can start early, like 6 days in (it did for me) and then within a month or two things can settle down. I started on the 125 as well. What's critical is that you can manage it during this time and hopefully your doctor talked to you about that? Immodium can and should help and I invested in a few bottles. Take it at the first sign of diarrhea or watery stools. You also have to watch what you eat. I made the BIG mistake of eating spinach one night. Very bad idea. I was living with the diarrhea, but never was really well managed. It was sporadic. I carried a bag with some depends, ziplock bags, wipes, and a change of jeans, shorts, skirt, whatever. I would keep in in the car if we went out and my husband knew it was my emergency bag and I would cue him if I needed him to get it. I never had to use it as I was always somewhere with a bathroom......and would often find myself using the bathroom several times while having dinner or lunch. After things seemed that they were "ok enough", things started getting worse for me with the diarrhea. My MO added lomotil to help control the diarrhea as well, so I was on both lomotil AND immodium. At first it seemed to help for a couple months, but then eventually I was max'd out on both immodium and lomotil and had no control over the diarrhea, which had an onset right about dinner time. I could hear the grumblings and knew where I would be spending the night. Terrible watery diarrhea and I lost a lot of weight. For reasons I won't go into here, my MO should have realized the 125 mg dose was way too toxic for me. There was just far too much of the drug in my system. I gave myself a drug holiday and told my MO I wanted tolower my dose. I switched MOs as well. I have done SIGNIFICANTLY better on the lower dose of 100 mg since the beginning of June. I still had some episodes of watery diarrhea, but found from a person on this site, Rene, to try metamucil. I now take that twice a day - 1 tablespoon in a big glass of water and everything is much more controlled. I have fairly regular bowel movements and can leave the house now without fear. I am careful, but I can eat a very varied diet, the nausea has gone away, I am eating 3 full meals a day plus desserts! Unfortunatey not yet putting weight on, but feeling energetic and strong again - hiking, boating, yoga (slow flo), gardening etc. Not as much as I used to, but still able to enjoy. On occasion, I still may pop an immodium, but that is very rare. If you do end up using metamucil, take it about 2 hours after your meds to be sure your meds are absorbed into your body first. If you haven't looked at earlier posts, you might want to do that. I also strongly recommend a toilet seat bidet. It will make you much more comfortable and you won't get raw or sore from so much toilet paper. Keep in mind that some people start on 125 mg, get through the first phase and continue for a long time on that dose...even years. For many others, that dose is too toxic and when the dose is lowered, everything becomes much more manageable. Of course my worry now is my next scans!! Since the SEs are finally much more manageable, and I can live with them, I am hoping to stay on verzenio alot longer. But, you know that nagging feeling when you finally feel like you have it all worked out.
Well, this is my story.....hopefully it helps and you will hear from others....
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Hi Woodlands,
As BevJen indicated, don’t assume you will experience the worst, particularly at that dose. I will have been on Verzenio a year in October and am doing quite well over all. It hasn’t been completely clear sailing but I have been able to manage with dose adjustments. I walk several times a day (I have a collie so walking is a must), work full time and manage a big house and large garden (well, manage in the loosest sense of the term - I’ve spent the last few days doing exterior painting as my house is an old character home which means I do my best to hold it together with latex paint).
My MO started me on 200 mg twice a day. That was a killer and I only lasted two weeks. Diarrhea was not a big issue but I was so nauseous with no ability to taste anything. That combo meant I had trouble getting food and liquid into me. Nausea meds didn’t touch it. So, after a two week break we tried 150 mg twice a day. Still some nausea so dropped to 200 mg once a day. That resulted in a HUGE improvement. I was on that for several months but then we found that my creatinine levels were continuing to rise exponentially. (They typically rise in the first month and then stabilize.) We monitored and then decided to drop to 150 mg once a day - I’ve been on this dose since February or March and my May scans remained stable. My other bloodwork has been good. No issues with neutrophils and hemoglobin (which was a big problem for me on Ibrance, ultimately leading to my MO taking me off it) is good.
In terms of the diarrhea, I have never experienced the need to go multiple times a day (throughout the day). In my case, the crampy feeling starts and then the cramps become progressively worse until they are very severe. I may make multiple trips to the bathroom within a narrow 30 minute to one hour window but once I reach the watery diarrhea stage that is usually it for the day. I’ve never had an accident although I have had a couple of really tense experiences when walking the dog. Both times I made it home but it was far from certain (big problem is I am a fainter, hereditary issue that means if I have trauma I can pass out - not ideal in a public setting!). I have continued to eat my regular diet which is heavy on fresh vegetables and have never been able to make a connection to a particular food. Like BevJen, I have experienced an uptick in the gastrointestinal issues in the last couple of months but the diarrhea incidence is still pretty sporadic (I can go days with no issue and then suddenly will have trouble several days in a row) which made using Imodium a bit tricky. More recently I started trying Metamucil but am finding it upsets my system in other ways so not sure if I will stick with it, at least while I am still able to function reasonably well.
I hope this helps. Wishing you a long run on this drug.
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Thanks for the advice! Lots of waiting to see what will happen. Waiting for scan results, biopsy results, blood results, and now waiting to see how the medicine will affect me. It has been a tough year. I really appreciate the kindness of the women in this group. Thank you so much.
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Is there anyone from Canada who was able to access this drug?
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Looks like I'm moving on from Verzenio after 18 months. Tumor markers have been inching up a few points per month since November and this past month they popped up 50 points. My markers have never been wrong.
I'll be moving on to Piqray. Hopefully that will give me a decent run because after that the only thing I have left is a few chemo options.
Best to all of you!
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I am so sorry to hear this lulubee! When are your scans? I wish you the best on piqray! Chemo options aren't fun but at least there are options now and hopefully more coming. And of course maybe by then a good clinical trial. Don't look too far ahead right now. You are strong and have been fighting this battle a long time. You can keep up the good fight! Will miss you on this thread.
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So sorry to hear this Lulubee. While Verzenio has its challenges it has been a good treatment for many of us. Hopefully piqray will give you many months progression free. Husband, I answered your PM.
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Thank you, HopeandGratitude and Sadiesservant. Very good advice about not looking too far ahead. I remind myself sometimes that some of the treatments I've taken were not available when I was first dx'd so many years ago. Anything could happen, right? Like... it could turn out that bee venom is a real thing? Please Lord, amen.
H&G, to answer your question, it kinda seems like my scans are all the time lately. Brain MRI, CT and bone scan every 3 months instead of annually. So far nothing new is showing itself but my onc and I know my TM's have never been wrong in 13 years, and we also know that my lobular gremlins are the sneakiest little monsters in the book. Over the years my ILC mets have popped up hidden, offbeat places like membranes, ducts, and even my pericardium. So the thought about the steadily escalating TM's is that it's brewing in there somewhere, we just don't know where yet.
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Due to the out of pocket costs of the Verzenio, my oncologist is trying me on Kisquali instead. I wish you all the best in your treatments (hugs)
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Good Morning All,
SeeQ, Yes indeed I highly recommend the Metamucil. My life was hell prior to adding it into my daily routine. It was so unsettling not knowing when the diarrhea might strike, but now I feel like I'm much more on a regular schedule with my bowels and I can live a somewhat normal life and go out without being terrified that I'm going have an accident. I do a heaping teaspoon twice a day. One with lunch and one with dinner and it seems to keep things in order. Also, I drink a protein shake in the morning which I add spinach to and by the time I finish the shake I need to visit the bathroom. Sorry if this is too graphic, but it needs to be said. After the shake I have a really thorough BM where I feel as though my bowels are pretty empty. Once that happens I'm good to go for the entire day and I rarely have to go (BM) again until the next morning. I guess we all have to figure out what works best with our bodies and our lifestyle. I wish you the best of luck.
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H&G, I am thrilled the Metamucil is working for you. I know it changed my life and when I joined this message board it was because I really wanted to share my experience with other people who are struggling with the diarrhea SE from the Verzenio. Maybe it won't work for everyone, but there's no harm in giving it a try. We're all just trying to help each other deal with our new reality so I appreciate all the information and advice people offer on this site. Thanks to everyone.
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ReneV, Under the circumstances, you're not being too graphic. This is a serious issue that almost everyone on this med has to deal with. I'm trying to find the perfect balance for my body; it's definitely getting better. The shake in thr morning is a good idea. I used to do that every morning (yogurt, almond milk, frzn strawberries, honey, and dark chocolate powder - yum!), but I've gotten away from it. I need to stock up on the supplies and start back up.
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Thank you for your great advice about Metamucil and for welcoming me to the community. Day 3 and so far so good. I would like to get something with electrolytes in it to have at home just in case I need it. What do you like to use? Thanks again!
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Hi Woodlands. I am not sure products would be the same as I’m in Canada but there were a couple of electrolyte mixes available at the drugstore which I had on hand. I did find them a bit challenging to drink however as they seemed a bit salty to me. I only turned to it when I was having extreme nausea
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I hope someone can help me. My mom was just diagnosed with Stage IV breast cancer with bone Mets and is prescribed an AI inhibitor and Verzenio 150mg twice a day. It’s been two weeks Since she started and she is having so many side effects. She is 74 and uses a walker, she is constantly nauseous and Zofran is not helping. She is having a hard time sleeping because she feels like she has to use the bathroom and she has zero appetite and is not staying hydrated. She is hardly taking in any food because she feels like she will throw up. I see her going downhill and it’s from side effects. Her MO does not want to dose reduce because she has only been on it for 2 weeks. I feel like she can’t go much longer feeling the way she does. Does it get better? Is it dangerous to dose reduce so early?
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Bengall,
To not dose reduce is nonsense. Push for them to drop the dose. Your mother’s symptoms are very similar to the ones I started with at 200 mg twice a day. I knew after two weeks that I could not live like that (and anti nausea meds didn’t touch it). I dropped to 150 mg twice a day but my MO was clear that if it did not bring substantial relief I should drop to 200 mg once a day. That made all the difference. I’m coming up to a year on Verzenio so dose reduction has not had a negative impact.
These drugs were fast tracked through approvals due to the positive results and dosages are set at what folks can tolerate, not necessarily what is needed to be effective. She needs you to be her advocate. Hopefully if you insist the MO will listen!
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