Abemaciclib Verzenio for Stage IV
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Hi Ladies. I am starting Verzenio and Faslodex next week. I have had Faslodex in the past so I know all about that...but I know nothing about Verzenio except it can cause Diarrhea....is there any other side effects I should know about?
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hi Nicole. If you have some time, I would recommend scrolling back for about a year on this thread as there has been a lot of discussion with regard to side effects as they seem to vary from person to person and affect some people more than others. You also might want to check out the VERZENIO website as they give some pretty extensive details on expectations, especially with regard to diarrhea. You should also look at the package insert if you have not.
I am not sure what dose you're starting at, but I started at the high dose of 150mg 2-times per day. I got hit with diarrhea right about DAY6 and had difficulty managing it for the first few months. Seemed to get somewhat better, but then about six months in things got terribly worse. I was on both Imodium at maximal doses and Lomotil at maximal doses and it didn't touch the diarrhea. I was losing weight pretty rapidly too. Bottom line, I was on to high a dose and had to drop to 100 mg 2-times per day. 150 mg was just not tolerable for me. Once I dropped the dose I was able to come off the Lomotil completely and cut way back on the Imodium. I actually switched off to Metamucil for a while which really helped to control it. And now I'm at the point where I stopped the Metamucil, and I only have to take an Imodium once every two or three days. There are some people on this site who have had little or no problems with diarrhea. That just happened to be my big one.
There is a certain amount of fatigue associated with it as well. I am fortunate that I can sleep as much and as long as I want, so I just do what I need to do to keep my energy up. I'm still able to garden, go on long walks, walk my dogs, do some gentle yoga classes, etc. Just rest when I need to and get a full nights sleep. Some people are hit a lot harder with fatigue than I have been.
Also, early on I had a very low grade interstitial lung issue. Also in the label. I really was asymptomatic but they caught it on X-ray for something else, so I was off for 2 weeks and on prednisone for just 10 days. That cleared it up and no issues since even with restarting at same dose.
All of my blood work has been good up until just now. My ANC had stayed up at about 1200 to 1400, but just dropped to 1000. My creatinine had also risen, and this is a warning in the label, but it had stabilized and everything was OK, until now. I was below 1.0 when I started and now up to 1.45. Because of both the ANC drop and the creatinine rise at same time, my MO wants me to take a 2 1/2 week break to give my body a rest. Not sure why these are hitting now after over a year on VERZENIO, but a break could be a good thing. There is no break built into the VERZENIO therapy. I guess my body is just getting tired. My MO's goal is to keep me on this as long as possible as I have good disease control except for this new tumor that just popped up. Everything else is quiet.
Hope this helps a bit.
P.S. should also mention I started on Ibrance plus letrozole, but ANC kept dropping too low so switched to verzenio plus letrozole. After almost 6 months, I had mets to bone, so they switched me to verzenio plus exemestane and added faslodex and xgeva. Liver mets were quiet. That was about 1 year ago. All stable until this new tumor popped up in liver....other mets in bone and liver still quiet. MRI tonight.
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Hope thanks for this info. Because I started Ibrance (2 years ago) at the highest dose and wound up 3 months in with HORRIBLE mouth sores and LOW Neutrophils and had to drop down to 75mg and even go off it for a month...(then it stopped working anyway at month 4) we decided to start verzenio at 100mg a day ..1 50mg morning and 1 50 mg evening. If I do well then we will titrate up. I am unclear why she decided to leave the Exemestane out (she was going to have me take that with the Afinitor) but I hated letrozole and I am assuming that Exe is similar so I wasn't overly upset about that. I tend toward constipation so much so that I cant even eat rice cripsies more than once a week or eat any rice more than once a week so we are hoping this will actually regulate me lol.
I am disappointed to hear there are and can be lung issues. My biggest concern though is mouth sores...I think I am going to do what someone on Afinitor does and that is to put the pills in a capsule then take it. Those mouth sores I had on ibrance were AWFUL I am also gonna use the dexamethasone mouth rinse 3 times a day when I start the verzenio. My 2nd biggest concern is the Neutrophils ...
The reason I didn't want to scroll back is bc a lot of times threads get off topic for pages and pages and its so time consuming just to find something about the actual side effects know what I mean?
Anyway thank you again for all that info and for all your prayers for me. I am feeling a bit better today
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Nicole - I never had problems with mouse sores. I did start at the beginning rinsing 2x a day with a combo of salt and baking soda, and after a couple weeks I stopped. No sores. Hope the same for you.
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Nicole,
I did have issues with mouth sores, likely contributed to by my diet to be fair. It wasn’t horrible but a bit of a constant battle. I found the steroid rinse was the only thing that worked.
As to the neutrophils, the beauty of Verzenio is that it typically does not result in the same impact to the blood that the other two CDK inhibitors have. Like you, I couldn’t tolerate Ibrance. In my case it was my RBCs and hemoglobin that tanked. It took months after stopping the drug to get back to the normal range. So hopefully this will not be a problem.
Wishing you good luck and that you do well on this drug.
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Thanks Sadie!!
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Nicole, I'm sure you addressed this question in the liver mets thread, but couldn't remember your answer and didn't know how far back I'd have to go to find it. I hope you don't mind me asking, but I thought Erubilin was working for you, so I wonder why your MO switched you to Verzenio?
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Bliss....ok so from a year before I was diagnosed with Stage 4 I had this weird itchy skin condition..(you may have heard me talk about it) I even posted pics of my elbows...I call them my "bites"...they literally look like scabies or bed bug bites...anyway...they figured out it was from my cancer and more specifically cancer in my liver...when Ibrance worked for the 3 months my "bites" went completely away...how did I know ibrance stopped...month 4 my "bites" were back...we scan all the cancer was back... I go on Doxil, then xeloda 6 months total and my bites were back in full force scans show progression in liver...I go on Eribulin...bites go completely away month 3 (like Ibrance) and scan everything shrunk...month 4...I get a couple of bites...I go and have Y90...all tumors in liver dead on scan no "bites".... so when I told my MO that I thought the Eribulin stopped bc I had a couple of "bites" (before the Y90) she agreed that it was highly likely it wasn't working any more...I asked a while ago that if I had a good scan from IV chemo could we at some point circle back to endocrine therapy and she said yes...and since my liver was looking really good from the Y90 (no tumor burden) she was willing to try this now...especially since endocrine therapy CAN work well on bone mets...which I believe mine are definitely growing now
. I am having pain and never did before in spine . She said if the endocrine therapy is unsuccessful we can go back and try Eribulin again.....
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There was something else I wanted to ask everyone...has anyone had success on Verzenio and is taking PPI's??? Proton Pump Inhibitors...ie: nexium, prilosec..etc
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I have taken prilosec on and off. There are no reported interactions between abemaciclib and PPI's. I would recommend to always check with MO for most current understandings though. I don't take prilosec anymore.
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Hi Nicole. Thanks for the explanation again. I remember about your "bites," but guess I forgot you started to have them again while on Eribulin. Hoping Verzenio treats you well.
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Thanks Bliss
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Hope, Thanks for sharing this information. So you are on Faslodex AND Exemestane? I have never heard of being on both at the same time. Also, I had no idea that ILD was a possible SE for Verzenio. I have a lot of lung mets so always worried about lung-related complications.
Nicole, Your discussion of the bites explains a lot to me. Last week, I discovered that I had a liver met. Since then, I've been getting tiny bites, mostly around my ankles. Look like bed bugs though I have never had a bed bug bite before. My husband doesn't have any bites so it couldn't be our bed.
I have had oral mucositis for the last 16 months. Just starting to get better so I hope Verzenio won't make it worse again. The Dex mouthwash works some but also causes Thrush so it starts this whole terrible cycle.
Hugs, Susan
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SusaninSF -
Yes, they just added the faslodex on and switched to exemestane. 2 different mechanisms of actionso trying to hit it hard and maybe prevent resistance through the endocrine pathway. There were some earlier publications on this - ph 2 studies I think. Can't get my hands on them rightnow.
Regarding ILD, there was and FDA warning in 2019 (link below) and all CDK 4/6 inhibitors have the warning in the label now.
https://www.breastcancer.org/research-news/rare-severe-lung-inflammation-linked-to-bc-drugs
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nicolerod —welcome. Hoping verzenio works for you. My SE are very mild. Other than low ANC count I go for labs again Tomm Hoping my anc is ok. If not MO will out me off again. I’m on 100mg.
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Hi ladies, i just started Verzenio about 10 days ago. Yes i have had bouts of D, but also nausea. Has anyone else had nausea, and if so did you take anything that helped?
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Hi Mary,
What dose are you on? I'm not on Verzenio now (unfortunately progression to the liver) but was on it for about 15 months. I started on the highest dose, 200 mg twice a day, and the nausea was debilitating. It was so bad that I struggled to eat or drink anything. Interestingly, the diarrhea wasn't that bad for me but when I spoke to my MO he reduced the dose right away. That helped tremendously.
When I had nausea with my pleural effusion I would often use the gravol ginger lozenges as I found them very helpful. I also find that chewing mint gum helps - particularly if I am also having taste issues.
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Hi Sadie, thank you for the recommendations. I'll try the mint gum first.
Dosage of Verzenio is 150 mg twice daily. Blood tests tomorrow. I'm getting Faslodex and Zometa on Friday.
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If you take Verzenio and have Stomach Pain but already take a PPI what else can we do to help with it?? I am taking Protonix 40mg 2 times a day and I take Pepcid AC once or twice in between and I still feel pain. I can't reduce dose bc I am on 100mg a day which is already lower to start
. Does anyone know any other remedies? I have also tried Marshmellow Root tea...which seems to help but not for long..0 -
Nicole, Sorry to hear about your stomach pain. I wish I had information to help you. I was told to take Pepto Bismol Ultra if I needed it. So far, haven't tried it.
I have diarrhea almost every day but it seems controllable with Imodium.
Had bloodwork today and was shocked to see my Creatinine level way up to 1.22, my eGFR plummeting to 49-57and my LDH (Lactate Dehydrogenase) up to 369. My bloodwork just before getting on Verzenio and Exemestane was all fine. I've been on Verzenio for 6 days, Exestane for 11 days at 150 mg dosage. Has anyone else experienced these kinds of blood level changes?
Hugs, Susan
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Hi Susan,
An increase in Creatinine is typical for Verzenio which results in an reduction in eGFR (they are related measures - eGFR is calculated based on the creatinine). The studies reported that creatinine goes up and then levels off very quickly. In my case it kept going up so my MO adjusted the dose.
I can't comment on the LDH as this wasn't measured when I was on Verzenio. When it has been measured it has always come back as normal though.
Hope this is helpful.
Pat
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Hi Susan,
My response and experience is fairly similar to Sadiesservant. My creatinine increased, but over a longer period of time, from 0.9 to 1.2. It held steady there and then increased to 1.3 and then to 1.45. Naturally the eGFR dropped as well. At same time, my ANC, which had been steady at 1200-1400 dropped to 1000. No changes in my liver enzymes and I don't think they tested LDH but I will go back and check. This has happened after being on Verzenio for almost 15 months (Palbociclib for almost 9 months before that). I am on the 100 mg, 2x/day. The 150 was not tolerable for me. I am now on a 2 week break to see if my ANC normalizes and if my creatinine decreases. If so, I will restart on Wednesday on the 100 mg dose, but will watch monthly and may have to take more of these short breaks to stay on 100 mg or may have to drop to 50 2x/day. It's keeping the original 8 liver tumors and my bone mets quiet so I really don't want to stop it now (even though 2 pesky new liver tumors popped up. This month I will have y90 locally to treat them and pray.)
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So I still have no diarreah ...if anything I am as constipated as ever...lol
I have not had any blood work and frankly I am afraid to have any. Creatine is to do with kidneys right??
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Well, I am off Verzenio for the next two weeks. My WBC are 1.8, my neutrophils are 800, my hemoglobin fell two full points in 4 weeks, and my kidney numbers plummeted. The blood tests will be repeated in 2 weeks. If they have recovered, and my tumor markers have not increased dramatically, I will go back on Verzenio at a reduced dose. If things don’t go well, I will move on to chemo. I am looking forward to the break. I have had diarrhea every day (5-10 times a day) for 6 weeks in spite of trying several non-prescription and prescription anti-diarrheals I have little appetite and not much energy. My body needs the break.
I hope others continue to have a better experience than I have had so far.
Hugs and prayers from, Lynne
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Nicole, I'm not sure when you started. It usually takes 6-8 days for the D to start - for those who are affected. Regarding the bloodwork, my creatinine stays low-normal, or just below. My ANC is usually good - also low-normal, and has only dropped below 1.6 twice, and didn't stay there. My WBC and RBC have been consistently low, but not enough for my MO to worry about. My eGFR is usually over 100. My AST and ALT have been nornal for the last three months (woohoo!), but my ALP stays a little high.
Sorry about the stomach pain. I rarely have that problem, so I've only taken a Tums (not very effective) and a single generic Prevacid twice.
Lynne, I'm sorry Verzenio was the pits for you. It really was hard in the beginning, and I know it never settles down for some people. Hugs to you.
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Lynne, so sorry that it has been so hard for you. You have been through the mill for sure and hopefully a break will let your body recover. I had to break for two weeks not long after I started and did find it helped although, surprisingly, it took over a week before I started to feel normal. That amount of diarrhea is horrible. I was very fortunate in that I never experienced the worst of it (for the first few months I would have one or two episodes maximum in a two week period). Oddly the diarrhea ramped up about eight months after I started the drug. Go figure...
With regards to the creatinine/kidney numbers, it's my understanding the impact on the kidneys is artificial. For some reason Verzenio causes a spike in creatinine which would normally indicate issues with the kidneys. However, as soon as I stopped the Verzenio the creatinine dropped back to normal. Hope that's the case for you too Lynne.
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SeeQ thanks for the reply guess what??? Since I posted that I have once again been back to my normal self and tending towards constipation.LOL So I don't think the D is gonna be a problem for me. The blood work/counts we will see I don't get blood taken for a few weeks....
Sadie I always seem to feel better after reading your posts...lol
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Ok, Nicole. I wasn't sure you had a full week under your belt, so to speak. Lol. Neither end of that spectrum is any fun.
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Nicole, I'm glad I was able to help. We all have soooo many things to stress about that I feel anytime I can alleviate concerns it's a bonus.
With regards to Verzenio and kidney function, from my reading there was no associated loss in function with the rise in creatinine. They measure creatinine, a byproduct from the muscles, as a proxy for estimating kidney function because it is much more difficult to measure the eGFR directly. There are some treatments that can affect the kidneys (pamidronate for the bones and the contrast media used for CT scans to name two) so they always monitor creatinine. When mine rose on Verzenio my MO was not at all concerned as the spike was reported in the literature as a common occurrence. When mine continued to rise we decided to keep an eye on it and lowered my dose - that lead to a leveling off albeit at a high level. We also stopped my pamidronate infusions given that I had been on it for a couple of years already.
But the good news is, once I stopped Verzenio the creatinine dropped dramatically and now two months later it is completely normal. I understand the angst though... so many treatments can be off the table if your kidneys are on the fritz! Eek!
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hi everyone. Hopefully everyone is doing ok. My blood work last week was ok. So I get to stay on Verzenio. Plus i got my first covid injection last week to. No SE other than a achy arm that had now gone away. I go back for labs next week. MO found labs every two weeks righ now cuz of my low ANC a month ago. Hugs to wvetyont
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