Abemaciclib Verzenio for Stage IV
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Susan- You are so remarkable! It looks like you got three years on femara (alone), then five years on Faslodex (alone) then three years on Ibrance+Femara, and are now trying to keep that run going with Verzenio?!- Huzzah!! They should sequence your cancer subtype, its so uber-responsive to these drugs!!
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Wow, Verzenio is the gift that just keeps on giving. I haven’t had trouble with diarrhea for what seems like several weeks. I’ve had some cramping of late but no “episodes”. This morning that changed. Cramping and then blow out with watery diarrhea but that wasn’t it. Still on the loo trying to deal with the cramping when I started to feel like I was going to be sick. Of course, that creates a dilemma - which need is more important? But then, the tell tale signs came that I was ready to pass out. Sweating, losing focus. I fought it off long enough to get myself together and head for the bathroom floor (tile seemed like such a nice choice when we renovated, less so when there is a chance your head is going to connect with that rather hard surface). The dog arrived next, alternating between excited/worried prancing and licking the perspiration off of my legs.
I never lost consciousness completely but came damn close. Ultimately it passed but my stomach has been a bit unsettled all day. Worked from home so overall not that bad but geez. When do these side effects subside? Just when you think you made it over the worst...
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Scary scenario SS. Glad you did not pass out. I too will have "D", that is like shooting water and twice I have gotten sick, along with the "D", and it's like do I sit to use the toilet or stand to throw up in it! I'm in week 7. I can only assume it's the Verzenio that is making me sick. Both times it was in the morning, after I had taken it.
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Checking in after a few weeks off for a trip to Costa Rica. Oddly enough, it was hubby who needed the loperamide and wore the incontinence garment I always take with us on our travels. I had to share my FiberCon with him also.
Tumor marker down to 50 with labs yesterday - had been 60ish last fall so nice to see a little dip. Even better was my hemoglobin creeping up. Still anemic but stamina seems to be increasing. Perhaps I’m feeling the results after few months on CPAP for mild sleep apnea. Continuing to pace myself, resting frequently and avoiding crowds.
For those of you suffering from Verzenio’s notorious diarrhea, be sure to inquire about dose reduction. I’ve been at 100mg two times a day for 15 months after a disastrous initial attempt of 150mg twice daily.
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Started Verzenio about 10 days ago but not off to a great start. Had diarrhea, bad abdominal cramps, lack of appetite, nausea and fatigue. I have been on various treatments for the past 8 years including 2 clinical trials, so I was wondering why I was finding this treatment so intolerable -(I thought perhaps I was having treatment burnout), as I have always persevered through all the other treatments. It turns out most of my lab result were abnormal - RBC, WBC, platelets, albumen and dehydrated. So after 8 days on Verzenio 200mg twice a day I'm on a 10 day break; to have blood tests after that and if they are normal will try Verzenio 150 mg twice a day. It's important to listen to your body and contact your oncologist when you think things are a off. Sometimes when starting a new treatment you are not sure what is expected and what is unusual - I wasn't supposed to see the oncologist for another 2 weeks and can't imagine what would have happened if I hadn't contacted him early.
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nnc, my onc started me out on 100mg 2x a day, I'm in the end of my 2nd month. Not doing too bad at all. If I continue to tolerate it ok, we will increase. I don't understand MO's that want to start us on the biggest dose. I'm all for starting small and increasing as tolerated.
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I'm not sure re:dosage but it is a stand alone treatment and I have always started on the recommended dose for my situation and then lowered doses based on my side effect tolerance (I usually go down a dose for all meds as my body metabolism for drugs seems slow or I am highly reactive to meds?) . I have an argument in my head that I want to fight the cancer as best I can vs quality of life which I am sure is what we all say to ourselves.
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Hi NNC,
200 mg twice a day is the recommended dose asa single agent so I’m not surprised your oncologist started you there. My MO did as well despite the fact that I was also on Faslodex. However, we suspected the Faslodex was starting to fail - found mets in my cervical spine and the base of my skull but it was unclear how long they had been there as that is not a place that is typically scanned and bone scans are useless for me.
I had to reduce the dose after the first two weeks. (Took a two week break.) I was completely miserable with debilitating nausea and mouth issues. Now I’m holding my own but hemoglobin and red blood cells seem to be slowly dropping.
This is definitely a tough treatment. Like you I have always managed well, even on pretty aggressive chemo. But Verzenio really hammered me. For the first time it made me think about what I was willing to endure to fight this disease and how important QOL is. Thankfully we were able to find a dose that meant I didn’t have to make that choice just yet.
Wishing you success with a lower dose!
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I don't know if it's the Verzenio that has me down this week or the whole basket of goods together. I have been really noticing a lack of endurance. My labs look okay except for my WBC's dropping to 3 and my ANC to 1.6. I'm not anemic and all my liver and kidney functions are within normal limits. I've been on the Verzenio almost a month now at 150 mg twice a day. Maybe it's just catching up with me. I'm thinking the lower ANC and WBCs might be part of the blah feeling I've had. My biggest challenge in all of this is separating out the side effects from one another. I also take the Faslodex and was on Xgeva but the insurance doesn't cover it so I have to do Zometa infusions instead. My first Zometa infusion was 2/5 and since I had previously done pretty well with Verzenio I'm wondering if it might be Zometa instead. Does the Verzenio have a peak side effect time? I feel like I"m always waiting for the other shoe to drop.
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Well, I gathered from my reading that after the first month the digestive issues sorted themselves out but I’ve been taking it for over four months and lately I’ve had a lot of cramping and some diarrhea. Huh? And typically the fatigue is cumulative but then, I am dealing with anemia.
It’s so hard sometimes to sort out all the SEs, particularly when we are on multiple drugs. Hope it subsides.
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nnc, yow-za, 200mg Verzenio twice a day. Whoever the women are that stay on that dose, they have a high level of tolerance!
I began with Ibrance at the standard 125 mg and was quickly lowered to 100 mg. After 4 months, it wasn’t working so I went to Verzenio.
The onc started me on 100 mg twice a day. Me, old tough girl, wanted to start at a higher dose because lets kill that cancer with all we got, right? When the onc’s pharmacist called to go over directions and side effects, I asked her about the dose, worried I was starting out too low. The pharmacist said wait and see how you do on the 100 mg and it can always be raised.
Well, Verzenio has been my hardest drug to take. Tough gal did not show up, haha! I see the onc later this month prior to zometa iv. I’ve stuck it out for almost six months to see if Verzenio can do anything for me, but I will discuss with the onc going off it and on to another treatment, even if it’s effective, which I have my doubts anyway. When I see the onc, she will schedule the scans and we’ll see.
So plz don’t worry even if you cannot take the 150 mg twice a day. It stillis a dose many of us cannot take. You are right, we have the treatment vs quality of life conversation in our heads, amd I can say Verzenio has affected my QOL terribly. But if it did help at all, at least I got six months out of it. If it didn’t, not much I can do about it.
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There are good arguments to be made for being on the lowest effective dose of Verzenio. Less acute side effects, obviously. But also, pneumonitis/interstitial lung disease might in some cases be caused by long-term, cumulative toxicity. I’m wondering if staying at the lower end may be useful as a preventative measure. What do you think, Cure_ious? (It’s a rare condition in any case but not as rare as initially believed.
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Hey Luce!! So wonderful to hear from you- are you seriously still on this drug?!!
I just dropped down from Ibrance-125 to -100 and am very surprised how much more energy I have and also way less GERDs (tho still significant), so I am a big fan of these lower doses!
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Cure_ious: yes, still on it, on highest dose. Tumor markers relatively stable (as of four weeks ago) but I have a large pleural effusion in my better lung again. I’m just not happy with any other drugs I could try so haven’t made any changes. Lily and my insurance may force my hand, though, since they both are refusing to let me continue to have this drug this year. Still fighting that as I’m running out. Very frustrating.
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Hhmm, Luce, wouldn;t they have to allow it if you added something to it, so its not monotherapy? A bit of Femara or even tamoxifen, perhaps? Are you taking any supplements? to what do you attribute your amazing run on Abemaciclib alone?!!
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yes, that's what my oncologist will presumably do, prescribed an oral anti estrogen. But if insurance covers it then, they’ll only cover the 150mg dose and I need 200
I hadn't had many lines of therapy prior, so that has helped with response.
I did add select supplements and repurposed drugs and maybe they've been doing something, too.
I also was on a low carb diet for much of the last few years. Since I have the PIK3CA mutation, low carb probably helped slow my tumor down.
I also upped my dose a year ago when my tumor markers were increasing. That seemed to make a difference. They then jumped by hundreds of points after my cat was killed in May but then stabilized again when I added more supplements
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This week I (finally) met with my oncologist. Haven't seen her since September. She showed great concern over the the severity of my side effects with Verzenio, especially since I was on the lower dose of 100 mg twice a day. It was a relief for my symptoms to be "seen" by her and not dismissed as trivial.
I told her of the shortness of breath, lightheadedness, fatigue and nausea. Plus she noticed the weight loss, 15 lbs in six months. My lungs sound clear; bloodwork shows anemia but not enough for a transfusion or Procrit. Onc instructed me to stop the Verzenio and thinks rbc count should rebound. She also thought bloodwork showed some dehydration, probably from occasional diarrhea.
Before we move on to another treatment, I will have scans. The soonest they could get me in was beginning of March. I'm fine with that and am just so very relieved to be quitting Verzenio. I will keep you ladies informed about what's next on my treatment agenda.
I usually drive myself to appts which are an hour away & sometimes the Pittsburgh traffic is heavy but I didn't feel up to it this time so dh took me. The onc went over so much information I was glad dh was there so I didn't have to remember everything to retell him.
I truly appreciate that you all listen, share advice and offer insight. It helps me have a more knowledgeable discussion with the oncologist, makes me feel like I know what I'm talking about. I really appreciate your support.
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Hi Divine,
While I am sorry Verzenio has not worked for you, I am happy to know that you have been heard. It’s a funny thing. I feel my MO doesn’t really get it in terms of the side effects either. I chalk it up to the newness of this treatment but when I mentioned how tough it was at my last appointment he said “How so?”. I love my MO but was actually a bit shocked at how little follow up there was once I started - this one can be brutal!
Bloodwork for me tomorrow so I will see what the RBCs and Hb are doing. Given how I am feeling I anticipate they will have dropped again...
Wishing you well as you move on to the next option.
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Luce, the good part about the direction you have taken, ie CDK4,6 inhibition first and then add anti-estrogens, is that you know that the latter can work by itself, even if the cancer has become CDK4,6 "resistant". And we also know that the CDK4,6 "resistance" is reported to be reversible in time, so you can potentially continue to dial these drugs up and down to optimize the response. Three years on CDK4,6 inhibition alone is tremendous, clearly the cancer is very responsive to this drug, and now just continue to eke more time on the combo.
Any news of anything at all on the horizon? I am non-plussed about how slow the field is moving at the moment
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Hi everyone. I am new to this blog so hoping I get the posting right. I was first diagnosed in 2002 (chemo, surgery, lymphadenectomy, reconstruction) and then with recurrent loco/regional in Jan 2018 with clean PET scan. One year later (2019), PET scan showed mets to liver - across both lobes. I immediately started on Ibrance plus letrozole, but my ANC took so long to recover that I felt I was off meds more than I was on them. Other than that, I was doing ok on Ibrance after making it through the first cycle. Appetite better, but fatigued. Lost about 20 pounds and still have never gained that back. First scans showed stable disease, next scans showed some shrinkage. However with ANC issues, had to make a move and switched to VERZENIO. I have some GI issues normally so was worried about this move. The diarrhea hit full force on Day 6 and I managed best I could with immodium. Docs said to expect up to 8 weeks of pretty bad diarrhea and then it would calm down. I am not sure the definition of "calming down". I have been on Verzenio for 4 months now and am still battling the diarrhea. I would say mostly Grade 1, but sometimes Grade 2. Problem is that it's not predictable. As soon as I think I am doing better, I get walloped and it knocks me for a couple days. Finding pedialyte without sucralose helps to keep elctrolytes balanced. I am afraid to go anywhere unless I know a decent bathroom will be accessible. A couple weeks ago I switched off immodium and onto 2 lomotil per day (2.5 mg), with option to increase to more as needed, or proactively if I am making plans to be out somewhere in public or socially. I can also take immodium while on lomotil. The lomotil is better at controlling the spasms, but still getting some breakthroughs. I am also back on a probiotic and zantac. I wake every morning nauseous and seem to get some better during the day. Never quite get over it, but enough that I can eat and "enjoy" food. Most of the food I love I cannot eat now - salads, veggies like broccoli or cauliflower. I avoid high fat and high fiber foods and too much dairy. I take lactaid when I have dairy hoping it will help. I am ok with most carbs but avoid tomato sauce etc. And I always seem to be exhausted even though I sleep 10 hours a night. After 4 months, I can't imagine that my body is ever going to get used to this drug, but my docs don't want to lower dose yet, they want to see what they can do to manage it. I think they are learning too. On a positive note, my last scan - PET scan - showed a complete metabolic response and tumors still shrinking and no new tumors anywhere else. Next scan in a few weeks. My anxiety goes through the roof before these scans, so also on lorazepam to help with anxiety and some of the nausea. I am hopeful and grateful. Although I do get discouraged and really upset at how my life has changed, I am still here and I have hope for me and for us in the future. I pray that while we are fighting and helping each other through, there will be newer meds arriving, maybe newer delivery systems, to help us live longer and better.
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Hope and Gratitude, welcome! Your experience with Verzenio is much like mine. I'm heavily pretreated,and hormonals have failed for me,so I have had Verzenio as a monotherapy now for 19 months. I'm on the 200mg. dose. Side effects have not lessened very much. Diarrhea is still a major issue, and nausea has been increasing recently. Not many other options left (Piqray,maybe), so I want to stay on Verzenio as long as possible. Immodium does help,but diarrhea still a big, sore, explosive issue. Just hoping and hanging on. Still worth the struggle.
Divine Mrs.M, so hoping your scan will be good. Hoping the next med will be effective and with only milder side effects.
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HopeandGratitude,
Welcome to Breastcancer.org! We're so very sorry for the reasons that bring you here, but we're really glad you've found us. As you can already see, you're sure to find our Community an incredible source of advice, information, and support -- we're all here for you!
You're sure to get some great advice from more members here soon, but in the meantime we wanted to point out some helpful pages from the main Breastcancer.org site that you might find helpful:
- Diarrhea from chemotherapy and other breast cancer treatments
- Podcast: Diarrhea -- Breast Cancer Treatment Side Effects
- Eating When You Have Diarrhea
- Podcast: Verzenio Side Effects: What Patients Are Reporting
We hope this helps and that you find relief soon!
--The Mods
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SchnauzerMom - thanks so much for the warm welcome. Although I wish neither of us had to go through this, it comforts me to know that I am not alone and someone understands what I am facing. Often I feel I am as the rest of my community/family can’t really understand what we are dealing with. They try so hard, but....how can they know? Will be doing my best to “live” with it, but it’s so weird as I feel I am not the same person I was before this diagnosis. I don’t want this disease to define me, but it certainly has changed everything. Learning each day how to manage and just taking things one day at a time. Prayers for you that verzenio keeps doing what we need it to do
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Hello,
It really is a hard drug to be on. I’m on a combo of Faslodex and Verzinio and the only dose I can tolerate of the Verzinio is 50 mg twice a day. Even that knocks my neuts sometimes but the tummy issues are mostly under control. I think you need a strong stomach to begin with on Verzinio and as I already had IBS I knew I was in for a rough time.
The good news is my liver mets have shown shrinkage even on the lower dose so don’t be afraid to ask for a lower dose in exchange for a better quality of life.
Xx
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cure_ious : I have only been on Verzenio TWO years, not three, so nothing extraordinary happening here. And, no, I would not actually TAKE any antiestrogens (chemenopause is bad enough), only have my oncologist prescribe them so that my insurance hopefully covers Verzenio for me. Problem is I’d have to switch back to 150mg but strongly feel I need 200.
Not sure the drug holiday thing is likely to succeed with Verzenio; chances are better with Ibrance, I feel.
Nothing on the horizon, according to my oncologist. He is even pessimistic about cancer ever being cured. He thinks controlling it with a combination or targeted and immunotherapy is much more likely. Far off forbreast, though.
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My Verzenio diarrhea was much reduced by dose reduction. After one year, it stopped completely, even though I went back up to 200mg. If anything, I’m constipated now. I have mild nausea following my morning dose which I think is mostly due to the fact that I don’t eat breakfast. Verzenio has been an incredibly easy drug for me after the initial months of grade 4 diarrhea, when I was constantly crapping my pants. I didn’t even mind that much back then because verzenio was clearly keeping me alive.
My TMs on it are either stable (in the 400s —down from the thousands before Verzenio—for CA 15.3 and 27.9; CEA in the 20s)or this past month actually dropped. They only spiked when my cat was killed. So Verzenio has been an amazing drug for me.
The incidences of pneumonitis are worrying, though, and I’m in fact wondering if I have that. Impossible to tell because I already had so much lung damage prior to starting it (in fact, I possibly had pneumonitis from an experimental immunotherapy when I started it) and haven’t been getting imaging since (my choice).
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In my mind, I have a tough girl persona. Like a little kitty who thinks she’s a ferocious tiger. Well, Tough Girl keeps forgetting to show up!
It’s been 3 days since I quit Verzenio. I sort of had unrealistic high expectations that my blood counts would ramp up and the fatigue, shortness of breath and lightheadedness would evaporate overnight. Haha! Not only is that not the case, but I am learning something else. The Verzenio took the joint aches away that the Aromasin causes, and now without V, my body aches . So its trade offs! I’m hoping the aches mellow out some. I’m allergic to ibuprofen and can only take Tylenol for body aches.
The nausea is somewhat better. I’ve added foods to my diet that supposedly help raise red blood cell counts like oranges, eggs, fish. Realistically, I’m thinking at least two weeks before I see some improvement with the fatigue and shortness of breath. I get bloodwork then, so we’ll see how the rbc’s bounce back.
It’s a matter of practicing self care and continuing to take it easy. Embrace my mellow side.
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Luce- Wasn't the first trial showing that Abemaciclib works as monotherapy? They always tout that as a difference w/Ibrance. Maybe they did not seek FDA approval as monotherapy? What was the PFS for that trial, surely not two years!
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I think like you, DivineMrsM, I like to think of myself as tough but this week I am not feeling it so much. My first month on Verzenio I did reasonably well. I've only had two incidents of the infamous diarrhea. I'm starting to notice now that my taste sensation is off and I'm feeling a little like the tips of my fingers and toes are a bit numb. I'm wondering also if anyone has experienced a consistent sore throat and feeling like the lymph glands are swollen on Verzenio? For about a week I am very tender around my jaw and lymph area and it feels swollen to the touch but I have no other signs of illness other than a lot of fatigue and a general blah feeling. I have a blood draw Tuesday so I'm wondering if my counts dropped. I see my MO on 3/3 and am going to talk to her about a dose reduction. I have been afraid to suggest it because in my mind it made sense that the higher dose would be more effective.
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Divine,
This treatment is definitely not for the faint of heart so the fact that you stuck it out as long as you did speaks volumes. If you recall, when I first started at 200 mg I was completely incapacitated by the overwhelming nausea. That, combined with the total loss of taste was making it impossible to eat or drink so after two weeks I took a break. It took almost two full weeks to get back to normal! And that was after only two weeks on this drug!
I’m doing much better in many ways after my second dose reduction but still, the list of side effects remains amazingly long. Still some cramping and diarrhea, taste better but off, bleeding sinuses, weird headaches and dizziness, shortness of breath, and, if I’m not super careful, mouth sores.
The impact on my blood Was worrisome with dropping RBCs and hemoglobin but my last blood showed they had rallied. I’ve been taking a vegan iron pill which may be helping. However, now I am seriously concerned about kidney function. Creatinine has been rising since I started the drug in October and eGFR has been falling at a fairly rapid rate. Those tests are not included in the recommended blood panel so it’s a bit of a fluke that I caught the trend. (They check kidney function before CT scans and MO orders a full panel prior to my four month appointment with him. At my prompting he added it to the monthly blood checks.) Latest results show an additional significant decline in function. I’m waiting to hear back from him - he’s away until Tuesday - but am getting very concerned. I’m not at the dangerously low level YET but at the rate this is changing? Thinking I may opt out of this drug as I don’t want to play Russian Roulette with my kidneys given how access to many drugs are dependent on good kidney numbers.
Always something!
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