Abemaciclib Verzenio for Stage IV
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Thank you emac877!
Happy Thursday!
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Hi, everyone. Anyone had experience of serious liver toxicity on Verzenio requiring dose reduction, pause, or discontinuation?
My mother has been on Verzenio for 2 cycles. Bloodwork monitored every 2 weeks. In the first month, AST and ALT were still in normal range. Second month the liver enzymes increased beyond normal range - 2 weeks ago they were around 40 and 60. This week is the 1st week of the third cycle. The lab report just showed up on the portal - AST and ALT suddenly jumped to 200 and 150, both > 5x ULN. Total Bilirubin is still in normal range as of now.
Anyone has similar experience? Would the liver toxicity resolve on its own, or Verzenio adjustment would be required if the enzymes continue increasing or stay high? Any medications or supplements that could help support the liver? I heard Glutathione (cysteine) and whey protein concentrate may have some benefits for the liver - anyone ever used them?
Any advice is appreciated!
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My ast and alt we're fine during the four months I was on Verzenio. When I stopped, I had to have bloodwork done before starting the new med and both ast and alt were elevated (not as high as that tho). I'm not sure if it was some sort of Verzenio withdrawal or because I had taken Tylenol a couple days in a row due to headaches. Next bloodwork was fine.
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After being on Verzenio (150mg twice a day ) for 1 year now, my med onc has agreed to let me lower my dose to 100 mg (twice a day) in hopes that it will help with the awful fatigue I have been experiencing for the last 6 weeks. Except for my fatigue level and thinning hair, I have really not experienced other side effects from Verzenio.
Am wondering if anyone on this thread has done such a reduction and seen side effects decrease while not causing makers or mets to increase.If you have, can you tell me if you noticed that it did help with your fatigue level? How long after starting the lower dosage did you see an increase in your energy level? Also, did it help with stopping your hair from thinning?
I realize that everyone reacts differently to meds but just wanted to hear what others have experienced.
Thank you for sharing!
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Going2beatthis - I am curious what responses you get. I have been on the 150 mg dose twice a day for a little over 2 years and am also stable. I have thought about asking my MO to reduce to the 100 mg dose for the same reasons.
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going2beatthis and emac, sharing my experience only - absolutely not giving advice...
I started on Verzenio 150 x2 in July 2020. I was really, really fatigued I the beginning. I'd say I slept 15-18 hours every day (not all at once). I was also dealing with the #1 side effect - the dreaded D. After a few months, the fatigue improved somewhat. I was not sleeping as much, but still really tired, and I spent a lot of time on the couch. if we had a day out of the house, I needed extra downtime for the next couple of days. I was still having big problems with the D. I'd been thinking about a dose reduction for awhile, but was really afraid I'd mess something up.
Feb 2021, I had my first clear scan. Then, in March or April, I decided to talk to my MO about a dose reduction. He agreed and I switched to 100 x2 in April. My biggest goal was to help the D, which it did reduce, but did not eliminate; it just made it more manageable. The first unexpected benefit was that after a couple weeks I noticed I felt better - which is probably less fatigue. Again, the fatigue is not gone, but I think it's less and I bounce back faster if I give myself the opportunity to rest. It still catches up to me if I push too hard for too many days. The second unexpected benefit is that my hair started to fill back out. My first clue was 1 inch hairs sticking out all over my head (I wear my hair past the shoulder) - now they're about 5 inches long and they don't stick out. I'll tell you, when my hair started filling back in, I was really worried that it somehow mean the meds stopped working. My next two scans were clear. The last one was in November, and I'll be having another scan in May, so I'm still crossing my fingers.
It was a really hard decision for me and I still second-guess myself.
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Thanks SeeQ. I started Verzenio in January of 2020 shortly after my stage IV was diagnosed. I've done well on it. I'm one of the few, I think, that had the Big D for less than a month and have done well otherwise (knock on wood). I do struggle with fatigue and that is my motivating factor in considering a dose reduction. I had a clear PET scan in May of 2021 though my MO has been hesitant to say I am NED. My bone scans since have showed uptake but less than previous where my mets are. I have been very stable but it's scary to want to rock that boat. Before stage IV I had taken Tamoxifen for about 5 months and it made me crazy so I quit thinking I had beat this cancer. That was in April. By December I was stage IV so while I can't blame that decision solely it does come to mind when I think about messing with my prescribed therapies.
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Emac - "I have been very stable but it's scary to want to rock that boat." This captures my thoughts exactly. I think earlier in this thread someone referenced a study about the Verzenio having equal efficacy at the 100mg dosage. You might read through earlier pages, or someone else may come in with details.
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Thank you all for sharing your experiences with the dosage reduction. It has been almost 3 weeks since I reduced my dosage. I have noticed that despite being tired at times, I am not constantly fatigued like I was on the 150m. Although I never really experienced the dreaded D, my stools are definitely not as soft as they occasionally were if I ate something that didn't agree with my stomach. I have my first blood work/makers next Friday. Hopefully everything will be great!
in the meantime, I saw my radiation oncologist 2 weeks ago and he said he believes the lesions in the front of my skull are NED. He was going to cut back on my MRIs from every 3 months to every 4 but when I told him about the dose reduction he recommended doing one more at the 3 month interval.
My next PET scan, will probably be in May since my last one was in November and my MO only has me do one every 6 months.
Will keep everyone posted.
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My wife is now at the reduced dose of 100. Not really sure if it has helped her energy or stomach issues. She was doing 150 2x daily, followed by 150 once a day. So her daily average fell from 225 to 200 with the 100 2x daily. I think she saw more of an energy recovery when she first went from twice daily 150 to 2 and 1 150.
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Hi All. I will be starting Verzenio next weekend (I hope). I have been having issues with Diarrhea for the past two months so my oncologist wants a colonoscopy before starting to determine cause or rule-out other issues. We have ruled everything else out and she doesn't want to compound things since V is known for diarrhea issues. In the meantime I have started Faslodex shots. She also discovered I am very iron deficient so I have started iron pills. My oncology office was able to find me some co-pay help since I am on Medicare and not elegible for the Lily card. Otherwise I was looking at a $2100.00 a month co-pay. It wouldn't take long to reach my annual out-of-pocket cost with that!
Verzenio is also my last oral therapy option before needing to switch to IV chemo. Ibrance worked for me for four years so we are looking at it as a second line CDK inhibitor. I have mets to bones and liver. I have been off all therapies except Aromisan since Affinitor put me in the hospital in December so we are not surprised I have progression. I appreciate reading all your comments and feel better about starting V rather than going to IV chemo yet.
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Intolight, praying that it works for you. My wife was on ibrance and letrozole for a number of years, then her tumor markers started and then continued to climb. She switched to verzenio and arimidex and it lowered the markers and kept her stable for over a year.
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Thanks husband. That is what I wanted to hear! I will let you know...
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IntoLight—I started on Ibrance and then moved to Afinator. I was hospitalized from Afinator (pneumintis) Jan 2021. Put on Verzenio in late January 2021. Been on Verzenio for the last 15 months. Stable bone and liver mets so far. I do have to deal with diarrhea daily though. It does make leaving the house tough for me.
Hope you find stable mets, too. Hope diarrhea is not an issue for you.
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dodgersgirl, you and I have a similar experience with Afinitor causing pneumonitis. I am hoping I have a long run on Verzenio. I have been cleared to start V since my colonoscopy came back negative with no pathology and I started it yesterday. Let's hope we both do well.
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IntoLight— good luck with Verzenio. Hope you do get a long time from it!
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Hello,
My run with Verzenio ended earlier this month, after being on it about 15 months. (Signature wont show end of treatment currently unfortunately despite me entering the info). I started developing stomach problems about 6 months in on the Verzenio/Faslodex combo and my tumor markers went up over months. Stomach issues began with burning sensation I attributed to spicy foods, but it got progressively worse, multiple digestive issues developed and I switched to a FODMAP diet as if I had IBS. Scans were all stable or even improved. Then in January 22 I was hospitalized with a small bowel obstruction, and once it cleared have stayed on a full liquid diet with minimal low fiber food. Had periodic bouts of severe pain, cramping, and vomiting since then. In March, at ER a CT scan showed moderate ascites, a significant increase but no obstruction. Had a paracentesis done that found malignant ascites, ER positive, low HER2. So even though pet scan at end of March showed no active disease (nothing lit up), in light of pain, difficulty eating, and ascites increase, I was switched to Afinitor (everolimus). Possible carcinomatosis has been mentioned over the years and my doc suspects such but nothing definitive shows on scans.
Im sharing this for others who might have similar experiences. For a long time I have wondered if my increasing stomach problems these past 7 months could be a Verzenio side effect rather than a symptom of increasing cancer in the omentum/mesentery. High tumor markers and malignant ascites don't support that wishful idea but. In any case, almost 3 weeks in on everolimus/faslodex my stomach is feeling noticeably better. I will be moving to another thread now and wish all of you on Verzenio a long and successful run.
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Hello,
My run with Verzenio ended earlier this month, after being on it about 15 months. (Signature wont show end of treatment currently unfortunately despite me entering the info). I started developing stomach problems about 6 months in on the Verzenio/Faslodex combo and my tumor markers went up over months. Stomach issues began with a burning sensation I attributed to spicy foods, but it got progressively worse, multiple digestive issues developed and I switched to a FODMAP diet as if I had IBS. Scans were all stable or even improved. Then in January 22 I was hospitalized with a small bowel obstruction, and once it cleared I have stayed on a full liquid diet with minimal low fiber food, as I could barely handle solid food. Had periodic bouts of severe pain, cramping, and vomiting since then, and have lost a lot of weight. In March, at the ER with another bout of pain/vomiting, a CT scan showed moderate ascites, a significant increase from last scan but no obstruction. Had a paracentesis done hoping it might improve my symptoms. They removed 1.2 liters and found malignant ascites, ER positive, PR negative, low HER2. So even though pet scan at end of March showed no active disease (nothing lit up), in light of pain, difficulty eating, and ascites increase, I was switched to Afinitor (everolimus). Possible carcinomatosis has been mentioned over the years and my doc suspects such but nothing definitive shows on scans.
Im sharing this for others who might have similar experiences. For a long time I have wondered if my increasing stomach problems these past 7 months could have been a Verzenio side effect rather than a symptom of increasing cancer in the omentum/mesentery affecting my digestion. High tumor markers and malignant ascites don't support that wishful idea but. In any case, almost 3 weeks in on everolimus/faslodex my stomach has been feeling noticeably better in the last week. Fingers crossed. If it doesnt work, my doc says Xeloda is likely next.
I wish all of you on Verzenio a long and successful run!
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Moominmamma, thank you for sharing your experience here. I am sorry you are having problems and I appreciate knowing them.
I have been on Verzenio for two weeks. So far I am trying to get my body stabilized but am also having stomach issues--mainly switching between diarrhea and constipation. I have severe fatigue but I am also very anemic so my oncologist put me on iron. That is probably the reason for the constipation. I have a history of diarrhea the past two months even being off all treatment but got the all clear to start Verzenio after a totally clear colonoscopy. I am hoping for a long run as this is my last oral option before chemo. Affinitor put me in the hospital with serious lung issues after only three months so please watch out for that. Otherwise it worked well for me on the tumors. I was on Xeloda before that for one year and did fine before my progression. I know we all react differently with these meds so it is good to share.
I shall add you to my prayers for Affinitor. Let me know how you are doing.
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Moominmamma- I'm sorry about your progression. It sounds like the Affinitor is working for you. Thanks for sharing your story. I've been on Verzenio 22 months and just for the last month I've had increasing indigestion and upper right quadrant pain, but no out-of-the-ordinary cramping. Tumor markers are holding steady, and I'm hoping for good scans next month.
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intolight and seeq - best wishes to you both. I never really had the common Verzenio side effect of diarrhea, and found that the fatigue got better after a few months. For me, the Verzenio/Faslodex combo was easier than Ibrance/letrozole.
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Hi I haven't posted in a while. I am currently on Verzenio 50 mg twice a day. I started January 2020 on the full dose (200 mg twice a day) which I did not tolerate and wound down to the current dosage over 2 years. My main problem with Verzenio is low neutrophils. So I have taken various breaks from the treatment until neutrophils are at an acceptable level I recently discovered new breast mass that was triple negative but the type of cell was not as aggressive as I feared so had mastectomy and still on Verzenio. Am waiting for CT scan of chest and abdomen to see if Verzenio is still effective treatment (fingers crossed) as recent bone scan showed no progression - stable and cancer markers are still good.
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NNC - Wow, reading your history list you have been through it! I hope that the CT results are stable and the Verzenio is still working for you and may you remain stable. We started Verzenio about the same time. I started on the 150mg 2x/day dose and that has worked well for me. I still get intermittent GI stuff but my biggest challenge is fatigue and hair thinning.
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nnc and emac, thank you for your post. I have only been on Verzenio for three weeks but I am on 250 mg twice a day. I feel I need a reduction already and will see my oncologist for that this Friday. I have extreme fatigue where I can barely walk. I am able to manage the diarrhea ok. I accidentally missed one dose and felt the difference within a couple of hours so I am pretty sure I can tolerate a lower dose fine. This is a new oncologist for me but she seems really receptive so I am hopeful.
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Hi,
I've been on Verzenio 150mg x 2 per day for 6 weeks and my Neutrophils tanked for some odd reason. After 1 week off my numbers bounced back to 1,200 but my ALK PHOS went up again. That itself triggered my ONC to order scans and limit my Verzenio to 150mg 1 time a day.
I also went through a similar situation with Kisqali and felt she took me off that too early. I was on that for 6 wks and had a scan for back pain (compression fracture T12) ONC saw progression and switched my meds.
I have whiplash from my ONC. I hope there's some form of stability in my scans I have not been able to schedule due to ONC office incompetency
. All I want is to be on 1 med for 3 months to see if it works. My ONC talks like she's written every endocrine therapy off for me. She is not a bad doc and is very detailed and has background in blood cancer which I have a form of as well. But damn my confidence in her is tanking to a extremely low amount. I am getting second opinions on every move from a diff ONC out of my area.
If stable scans then she's reducing my meds to 100mg x2 per day but she even writes that off as a short term medication fix. Why? My blood was stable for 6 wks on 150mg x2....
If progression she talked about chemo to knock it back and then trying to treat it. I still feel like we are burning time extending medications. I'm so pissed.
thank you for letting me vent
Tigre
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Tigre - how frustrating! I was going to ask if you were getting a second opinion so I'm glad you have done that. My favorite ONC retired about a year ago and while I like the new one, I only see him once every 3 or 4 months. Our cancer center went from a smaller doctor owned clinic to a larger hospital system owned clinic and the efficiency has not been for the better. I have had to be very direct and ask very specific questions since the change over and it takes a lot more monitoring of my lab and imaging schedule on my part. I wouldn't hesitate to voice your concerns with her and ask for explanations for her decisions. That does sound like a lot of bouncing back and forth.
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emac877
That sucks that your ONC retired, my prior one moved on to a different patient pool. I miss her and her open minded attitude. It is tiring that you have to be more on it with the change in the medical office you go to. It feels as though we do a portion of their jobs sometimes. We have to do that as well. Thru a second opinion we found a few things were missed and since we have requested them. Tumor gene/Mutation testing (thought they had done that - but they did not) and medication front loading of Faslodex (1 shot every 2 weeks for the first 6 weeks). One we can't change and one we are awaiting the results.
I try and voice my concerns and opinions like an adult but I do come across like a teenager with anger behind my voice, I love masks for this.
My last apt (yesterday) I must say even my hubby was impressed with my control of rage I have for this overwhelming situation. Therapy helps I guess. ONC morbid and dreary answers are what prompted us to seriously consider the switch. If we are unable to (2.5 hrs away and the schematics might be an issue) then she will see a very different side to use every step of the way.
oh happy days....
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Tigre etc al. I have been on Verzenio only three weeks. From your experience shall I give it more time before requesting a dosage relief? I am just so tired and can barely do anything. Will it get better? I am handling the diarrhea although I swing between d and constipation because of the iron supplement. I see my oncologist on Friday.
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I can tell you my experience . At the start of treatment they monitor for side effects more closely. Initially every 2 weeks then once a month which I have kept since my ANC always needs close attention. My neutrophils (ANC) has to be =/> 1.0 for me to continue receiving a current dose of Verzenio. If it is lower than 1
1) I might take 1-2 weeks off and if ANC is 1 or above THEN I restart with the same dose
2) HOWEVER If ANC is low again once I restart THEN the dosage gets reduced by 50 mg for each dose (twice a day).
So 2 years ago I started at 200 mg twice a day. They like to start high and see what you can tolerate. I immediately dropped from 200 to 150 as all my blood tests were dangerously low and I felt really sick. Was on 150 for a while until my neutrophils were consistently low i.e after taking a break they . And so on - until my current dose which is 50 mg twice a day. These protocols are in the insert in the box. But here is a link as well: https://uspl.lilly.com/verzenio/verzenio.html#ppi
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Intolight, I started on Verzenio in March 2021 adding that to the Letrozole which I started early February 2021. I never experienced diarrhea which I experienced to 3 things: I drink lots of water with my meds, I take a high quality probiotic (BioK Plus) and a positive attitude. I would wake up every morning and tell myself that I was not going to get diarrhea today. And my body listened!
On this regiment, my markers decreased fairly quickly. My CA 15-3 was in the Standard Range by the end of April and my CEA was in the Standard Range by the beginning of August. My tumors and lesions shrink and many of my mets in different areas resolved themselves on PET scans.
I had discussed lowering my dosage of the Verzenio with my Onc when I was tired in the fall of 2021. She told me that she did not think doing so would be detrimental. Despite that, I felt that if I could stay on the higher dosage, I should. At the end of 2021 and the start of 2022, I began feeling extremely fatigued. In mid March I decided to decrease my dosage to 100mg twice a day. I had blood work about a month later and my markers decreased more (CA 15-3 12.2 and CEA 1.5). My next PET scan is coming up. Am hoping that more mets have resolved themselves and that my tumors and lesions have shrink. Am looking forward to the day when I am NEAD!
Hope your oncologist lets you decrease your dosage.
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