Abemaciclib Verzenio for Stage IV
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Sadiesservant - Verzenio has been working so well that I’ve been afraid to decrease the dose. I’ll have to think about it. The diarrhea isn’t having a major impact on day-to-day life other than knowing where most bathrooms are in town .... I had to laugh though. I needed to make a stop in the woods when I was running and when I came out the woods, a hiker had stopped and asked me if there were good views over there. Glad he didn’t decide to check things out sooner
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Hello Bliss and welcome to this thread. Any questions, ask away. Lots of experiences and not all the same. I hope verzenioworks for you and for a long time!!!
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Bliss58 good luck with Versenio. I’m just starting my three month mark with it! So far my numbers are looking good. Yes diarrhea is the worst part but Metamucil definitely is helping me. Still have the big D but I’m managing it. Stay strong
Kathy
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Thanks H&G and Kathy. I hope this works well on my liver mets. Glad to hear your numbers are good, Kathy. That's something I'm concerned about, too, especially liver enzymes.
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HI everyone. I will be joining the verzenio thread. I was on Ibrance for only 3 weeks. Back in October / November. But MO took me off because my numbers were very low. So I’ve only been on letrezole and zolidex. But after my CT scan last week it shows more lesions in the bones. No organ involvement. So, instead of going back on Ibrance, MO is putting me on verzenio 150 twice a day. Any tips. Thank you. And hoping this treatment helps me to keep things at bay.
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Hi Hopfull2,
Welcome to the Verzenio club. I wondered if this would be the recommendation when I saw your note on the bone thread. Like you, I couldn’t tolerate Ibrance due to severe anemia. Thankfully Verzenio has not had the same effect.
Wishing you well on this new regimen.
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Hi Sadie! What dose are you on, and what do you do for side effects? Does Verzenio also cause a lot of fatigue?
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hi sadiesservant—. I too wanted to as you what dose your on. I will start on 150 mg twice a day. But I see some ladies are in 100 mg. Yes my MO will do labs every two weeks for the first month. To keep an eye on my hemoglobin with this new treatment.
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Hi Hopful2. I also started on Ibrance, but in combination with letrozole for liver mets. My ANC numbers were too low regardless of dosing schedules we tried and it seemed I was off it more than I was on it, so I switched to verzenio 150 mg 2x/day plus letrozole. Liver mets were stable but then bone mets appeared, so I switched from letrozole to exemestane, added faslodex and xgeva. I started having terrible GI issues on 150, even thought max'd out on imodium and lomotil. Lost alot of weight. So, I stopped the verzenio, imodium and lomotil and gave myself a break for a few days. I started back up on the 100 mg and suddenly felt human again. Still had some GI issues, but started using metamucil 2x/day and that was a game changer. Every now and then I have to pop a single imodium, but everything has "normalized" for the most part. I am pretty careful about what I eat, but have a very varied diet and eat really well - good appetite. My ANC is about 1.5-1.8 and no issues with liver enzymes. Creatinine slightly up, but stable. Liver mets and one mets stable right now. I sleep long hours during the night and am ok during the day without too much fatigue, so do alot of dog walking, some hiking, slow flo yoga etc.
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It’s been a bit of a ride for me in terms of dosage. My MO is clearly not afraid to play with the dosage and timing to find the sweet spot between efficacy and tolerability. He started me at 200 mg twice a day. Whoa... that was horrific. I was so nauseous that I was struggling to even take in fluids. Dropped to 150 mg twice a day after two weeks. It was better but not great. He then dropped me to 200 mg once a day. I was on this dose for several months and then my creatinine started to climb. ??? He dropped me to 150 mg once a day. That went well for a long stretch and then suddenly the diarrhea ramped up in the summer. Seriously? I was managing and not overly concerned but then started to lose weight (this was related to some radiation effects I was dealing with). MO recently asked me to drop to 100 mg per day.
I’m sure I am an anomaly but ultimately I’m comfortable with where things stand. Given my height/weight I do believe the dosage is just as effective and if it means I can stay on it.... The proof will come next week when I have my next set of scans!
As to fatigue, I’m dealing with quite a bit of late but I’m not convinced it’s from the Verzenio. I had five rads treatments to my skull and think there may be some other stuff brewing. It’s so hard to know what causes what with this disease!
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sadiesservant—-thank you . Hopefully I can tolerate the 150 mg twice a day. I been reading about on this thread. Looks like fiber is key. So I will look into a fiber supplement. I just want to be prepared.
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I will be starting Verzenio this weekend. I am concerned about the side effects. Any help with hints for the meds is appreciated such as eating with it, did you have stomach issues, did you lose your hair, was there a lot of fatigue, etc?
Thank you, Patty
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Hi, I am on 150 mg twice a day for 6 weeks, diarhoe only occasionaly and not need to use immodium, fiber I used may be five times. I guess I am lucky. I feel actually better than I have felt on Kisqali. My neutrophils are 1.9...on Kisqali it was below 1.
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Maaki - Good news!! I hope your tolerance to the 150 mg continues and that you also continue to do well on this treatment regimen.
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Maaaki - That's great news! I also tolerate the Verzenio really well. I never got really bad diarrhea from it and it has worked well for me for the year I have been on it. My counts have been good.
Have any of you had to be off Verzenio for a period of time while pharmacy stuff was getting worked out? Did that work out okay? I have insurance through my work but it doesn't cover Verzenio so last year I was approved for the Lilly Cares program and am able to get it through them. In December I had to re-apply and I nearly ran out of meds while they were clarifying I was still approved and reapplying. Today I called for a refill and they said the approval wasn't done yet because I didn't have a recent denial and appeal letter from my insurance company. In the mean time, I am out of meds as of the 18th. My doctor's office is aware but there is some risk that I might be out for a week or so waiting on this paperwork process. I know that sometimes people take breaks from Ibrance but I wasn't sure about Verzenio. I'm trying not to stress about it. This stuff gets worked out but I'm also a little nervous about having to possibly be out for a bit.
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I was switched from 150mg Verzenio to 100mg Verzenio. I believe I took a week off between the two. I can tolerate 100mg Verzenio soooo much better than 150 mg. I am on my third month of 100 mg, and most days I don't have to take a nap in the afternoon. This is a first, as I napped with Ibrance for 6 months as we lowered the dosage, and napped with 150 mg Verzenio. I have insurance and my co-pay for Verzenio was supposed to be $50 a month, but I signed up for a year free if I answer a lot of questions each month. I am glad they have another program to cover the cost. Both Ibrance and Verzenio are very expensive if insurance didn't cover them!
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Thank you Woodlands. Yes, I am being told the Verzenio is $12,500/mo out of pocket which is not doable for me (or most anyone I would imagine) its crazy! Going in to the weekend I don't expect to hear from anyone so I am taking my morning dose only. I think that will be fine and will buy me a few more days in case the paperwork takes longer than expected.
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Hi Emac,
My MO has never been concerned about taking breaks so it shouldn’t be a problem. I had two weeks off between the 200 mg and 150 mg BID dose - that was over a year ago. More recently he suggested we take a break, I balked, so we compromised on going to 150 mg every other day until I could get the 100 mg pills.
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I just finished my first week of Verzenio, 150 twice a day. So far, no GI issues. In fact it seems to have the opposite effect on me. I hope I continue to tolerate it well. I need something to work that I can stay on. My MO is having me do weekly labs for the first month then every two weeks after that. My neutrophils are down, but not out of range yet.
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Bliss,
My CBC and chem panels have been fine and steady on verzenio. No liver enzyme issues at all from the meds and my tumors are stable right now (praying!), so all that is calm. Some things are a little on the low side, but not crazy. Hgb, hematocrit a little low. My creatinine increased (noted in verzenio label to keep a watch) but stabilized at about 1.1-1.2. Sadiesservant (I think) had more issues with creatinine than I did so she can speak to that. My ANC has stabilized at 1.5, sometimes it pops up 1.6 to 1.8, and that's a whole lot better than 500 or 700 when I was on Ibrance!!
My MO (now my third one since I moved to western NC) recommended next time a metabolic panel including thyroid etc just to check on everything. Haven't had anything like that done since this all started 2 years ago, so might be a good idea.
I think I am having some side effects with Xgeva, so now thatI have been on it for nearly 10 months, I am going to switch to the "every 3 month" schedule. Should have done it before, bu so much with switching docs we never did.
Hope your GI stays strong!!! I assure you will handle everything else in stride. I wish you luck!! God Bless!
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Thanks Hope for sharing. Your experience encourages me.
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Bliss, I hope this regimen holds up well for you!! Are you taking it with Faslodex? Actually a lot of people seem to be doing OK with Verzenio, they must have figured out how to handle the rash and GI problems..
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Cure-ious, thanks. Yes, I am taking it with Faslodex. So far, no problems there either. At this point with Piqray, I was awfully sick and couldn't eat; no strength, so, I'm pleased with the new regimen. Just hope it's working! I have a PET/CT coming up Wednesday.
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Bliss -fingers crossed and in your pocket on Wednesday
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HopeandGratitude, thanks for the pocket duty!
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Sadiesservant - thank you! That makes me feel better. I am taking my 150 mg dose in the mornings and skipping my evening doses. The good news is that in the midst of all the Lilly Cares paperwork confusion my work insurance decided to cover it. I have to have it processed by a different pharmacy now because of that and they are closed today for the MLK holiday so I have to call them tomorrow. I've been on a 1/2 dose for about a week now and will be able to do that through Friday before I'm completely out so I think it will work out. The plus side of it is that I've not felt as tired. I am trying to tell myself it's psychosomatic but even though I still have some fatigue, I've felt a little more like my old self this week which has been a nice break.
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Hi emac877, you can request overnight delivery from your pharmacy provider. I use CVS Specialty, and on different occasions they have had the monthly Verzenio packs delivered to me overnight. That way you won't have to wait much longer for your correct dosage to start up again. Good luck!
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Sounds like you have a good plan Emac. I would be comfortable with the 150 mg per day but... I get it. I do think they err on the side of more rather than less in terms of dose.
Scan/test week for me so we will see how my theory plays out. Blood a bit wonky but nothing remarkable. Bone scan tomorrow (don’t hold much stock in this - they seem pretty useless) then CT Friday.
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sadies, I hope your scan and ct come out good. I had mine done last week. And days leading up to it I was a wreck. I get so nervous. But I pray everything goes well for you.
I have not started verzenio yet. I should get the call tomorrow to pick it up. Dr submitted referral last Wednesday morning. But these things always taje a couple days to get approved. I get my zolidex injection tomorrow and Zometa infusion Wednesday. I’m ready to start verzenio. Hope you ladies had a great day. I’m in southern CA and the weather today was beautiful.
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Hi ladies, do you have problems with mouth sores? It seems for me much bigger problem than diarhoe
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