Abemaciclib Verzenio for Stage IV
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@birdsndognow I’m really happy that we can help in some way. Although we all know our doctors have the medical knowledge, some input from those dealing with the day to day is immensely helpful. I understand the anxiety of starting a new medication. I am also one of those people that react to just about every side effect. If there is one listed I would get it. However….that has not been the case with my most recent meds. I do get one bad side effect and it’s a real bi*$h but I can deal. So in other words try really hard not to be scared and keep positive thoughts and an open mind. I’ll be thinking about you and please keep us posted!
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Hi there. I can relate to your fears. I tend to have the “extremely rare” side effects to drugs and vaccines. What I can offer is that I’m 64 and both my parents are in their 80’s. My grandmother was a breast cancer patient for the second time into her 80’s. Verzenio has a good track record at both extending life expectancy and staving off recurrence. So being 70 or close to it in my case, wasn’t a deterrent for me. Everyone has to decide for themselves and here we respect that, so you are in good company. I’d also add that you can always ask your MO about starting at the lowest dose rather than the highest. I started at 150 and dropped to 100 when I decided the side effect of diarrhea was too difficult to manage. I’m sure you read all that…
There are so many tips on this thread that could help you and we will be here to cheer you on. I can honestly say that I’m glad I stuck it out for the long run. If I do ever need to go back to it or a similar drug, I do believe that I will. Please, please let us know how you decide. We are here for you.
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@seeq thank you for the information. GAS X I have tried and it's not too bad at all. I am encouraged by you moving down to 100mg and fairly confident the research says it doesn't change much in terms of progression but helps with some side effects. That's where Im at. thank you !!
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@tbos805 whoa ! Really !? Skipping breakfast or having it later has helped that much with stomach issues. Why do you think this makes such a difference? I am so game to try it. But eating lunch and dinner totally fine,? This skipping breakfast then high protein sets the stomach 'tone' for the day in a bettre place it sounds like. But I am so curious why that would be??
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@tbos805 also so happy to hear your markers went down.
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I know, right! What the heck??! I was just so desperate I tried it and no issues since. Zero. Maybe morning food is not compatible with a morning dose. 8 PM dose is perhaps not an issue because I never eat that late. I hope it works for you - please let me know!!
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Interesting about the dosing without food. I never had stomach problems but I have never been one to eat breakfast and didn’t eat with the evening dose. I’m wondering if I actually avoided one side effect. who knew?
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Hmmmm, interesting, @kathrynw1thasea !!!
@dutchgirl11 !!! ^^^^ Curiouser and curiouser!!!!
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This is the investigation of the year! Started this morning with bite of banana and then premier protein drink. I am trying this for next few days. What an odd thing. But if it works ! Stay tuned. Thank you for this suggestion
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@ birdsndognow - I was diagnosed in 2021 initially when I had a plural effusion and breast cancer cells were found in the fluid extracted. I started on Letrozole (AI) immediately and then Verzenio a month later. The Big D was never an issue. I attribute that to drinking lots of water and taking a very high count probiotic.
I, like you, had never really taken RXs during my life (then 68) since my body was sensitive to chemicals. Like my Mom who lived to be 91, I leaned towards homeopathic and natural things. At the hospital, the nurses could not believe that I was not on any prescription drugs.
The AI started failing me (tumor markers started going up and some progression to bones in my spine) in the fall of 2024, but that was not noticed in the scan I had in October. It was eventually determined that the AI was no longer working at the end of January.
Feel free to send me a direct message if you have any specific questions or look at posts I have put in the thread before.
Wishing you good luck as you begin your treatment.
Going2BeatThis
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Good morning. New question: Does anyone have any experience with high creatinine, low eGFR blood levels after about a year on Verzenio + Faslodex + Zometa?
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I'm going to tag @going2beatthis because I think she had similar experience and it was not a problem. I'm not sure I remember the details and I don't want to give you the wrong info.
ETA- I see she has not been back to the boards for a bit. If I remember it correctly, the numbers in the bloodwork made it look like a kidney problem, but it wasn't truly a problem, it was just the Verzenio skewing the numbers. If you're ambitious, you might scroll back through this thread a few months to see if she posted about it.
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Thank you, @seeq ! I had read through several posts after searching "creatinine" and "eGFR" on the site and saw a few posts about it before I posted my question. My PA feels it is a dehydration "blip" although I was well hydrated for the blood draw and constantly peeing that morning. She wants me to drink 60 oz fluid a day and be rechecked in a week so we'll see. Fingers crossed and thank you again for responding and I hope all is well with you.
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@thos805 - Hi. Seeq is correct. The Verzenio does effect you Creatinine and thus the eGFR since the eGFR is caculated using your Creatinine level. When I was take off the Verzenio my Creatinine level went back to normal. The nephrologist said I had Kidney disease but my MO said that was not the case.
Good luck. Hope you get a long time on the Verznio.
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@tbos805 ---experience with high creatinine---
Hi. After just a month and a half, I stopped taking Verzenio. I had so much going on with side effects. I was on 100mg 2x daily.
The last blood draw showed my creatinine level edging over the normal value range. I've never in my life had any creatinine changes.
I see my oncologist in about a week. This will be a serious talk, because I want to know exactly HOW these "targeted" therapies work.
It might be the end of all therapies for me, because I am not interested in Translational and Precision Medicine with all it's Remote capabilities trying to cure me, if it does what I think it's doing. I don't know whether to talk to my medical doctor, or a bio-electrical engineer... :-) I don't want anything to work by changing my very own DNA.
Sorry, it's just my own feelings on this, due to personal reasons.
Keep strong in your fight against this monster of a disease, hope a good treatment regime is worked out for you. Have a great week.!2 -
@birdsndognow , thank you for your comment. As someone who has no family history and nothing inherited or heritable per the most recent and updated genetic testing, I know that my cancers are chemical-environmentally caused (ground water poisoning growing up on AF bases that are now Superfund toxic cleanup sites) and it is very hard to accept that chemicals are going to help my situation so I know exactly where you are coming from. Thank you again and best wishes to you, also.
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@birdsndognow - everyone has to do what feels the most comfort, but as I said (and I spoke to 2 MOs and an MO who did an extensive study on the effect of Verzenio on one’s kidneys), once I went off of Verzenio after 4 and 1/4 years, my creatinine returned to normal results and there was no damage to my kidneys.
Good luck.
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birdsndognow,
I had significant creatine increases on Verzenio, which were reversible like the neutrophils, but there are different options you can choose from, like I don't remember getting that problem with Ibrance.
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Hello again - to update my Jan. 28-29 posts above: I was instructed to hydrate 60 oz fluids daily for a week and retest blood. It was very hard to even get in 50 oz but I could do 40 oz. and even then my stomach was cramping terribly from the water guzzling ("Oh no, not THIS again!") So that was an indication that maybe I was dehydrated. Sure enough, a week later my creatinine and eGFR levels were back to normal. I have tried to keep it up and really hydrating hard right now for today's monthly blood draw before injections. Thanks for all the responses! Terry B.
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@tbos895
was instructed to hydrate 60 oz fluids daily for a week and retest blood
Hi Terry! Thanks for that info! I have almost a week before my next blood tests to be done, so I will try that. I think I might be dehydrated, just the way the skin looks on my arms. Real crape papery. I went to 50 mg of Verzenio twice daily.
I meant to get back to you about your reply to me not long ago about environment and breast cancer. My residence for 18 years before the last 6 years was in a suburban neighborhood that I was told was formerly a dump. And I believe that, because I'm a gardener, and every time I'd go to plant shrubs, trees, etc in the yard, I'd come across all kinds of things like bottle caps, and stuff. Complaining to my neighbor about this, they told me the place used to be a landfill. And, my next door neighbor, living there all her adult married life, also got breast cancer. Aamof, there was a lot of cancer in that neighborhood. I'd love to see a "measles" map of cancers for that zip code.
Take care, hope you have a good weekend.
~ Wanda
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@tbos805 We're so glad to hear your labs improved with hydration. A great relief. Thank you for circling back to share what happened.
@birdsndognow it’s completely understandable to wonder about environmental factors, especially when you learn new information about where you lived. If you’re concerned about a possible cancer cluster, local or state health departments are usually the right place to start for information.
Wishing you All a smooth end of the week and good results with your upcoming labs. 💛
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I have been on Verzenio since 2024. I just started developing sores on tongue. Is that normal. For the most part I have managed the Verzenio ok. Have anyone else got this after some time. It just started after 2 years
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I’m so sorry you’re dealing with mouth sores—they can be really uncomfortable. I was on Verzenio from February 2019 to November 2025, and I had mouth sores on and off during that time. I also experienced very painful cracks at the corners of my mouth, which sometimes made it hard to even open my mouth to eat.
Unfortunately, this can be a common side effect of the medication for some of us.0 -
Have my official MO meeting on 4/17, but she has already mentioned that I should expect a treatment change and her first choice is Verzenio. I have been reading pages and pages of this thread and I'm fascinated by all of the tips and tricks you have developed or stumbled upon in dealing with the SEs. I'm really concerned about the diarrhea and cramping, as my GI tract took a beating last year.
From June into November, I had recurring bouts of diverticulitis which were inadequately treated by giving me repeated low doses of Augmentin - this reduced the infection somewhat, but never cured it. I finally had the sense to fire the gastroenterologist and primary care doctor and hire new ones who immediately sent me to an infectious disease doctor. A midline port and 14 days of ertapenum resolved it. The worst part is that during the time I was on antibiotics I couldn't take Kisqali, and the time off of that totaled 3 out of the six months. My CEA ( which is predictive for me) has risen to 48, and my nuclear bone scan is showing that sclerotic mets in my left hip are active. My other scans are scheduled for tomorrow, so I'll know soon where else this beast is active.
Initially, I had a very difficult time with Kisqali at the standard dose of 600 mg. It was lowered to 400 mg. and after an adjustment period of about 3 months, I have tolerated it well for 4 years. After reading all of your comments, I'm determined to insist on a starting dose of 100. I was happy to see several references in this thread to a study indicating that this lower dose is just as effective. I was also happy to see that many of you are in my age group. I am 75 and hope to have a few more years.
Looking forward to learning from you.
Eleanora
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@eleanora I’ve been on Verzenio for about 16 months with a break for surgery and radiation. My MO started me at the lowest dose of 50. Then after a month or so upped it too 100. I started having SE but they were tolerable so she kept me there. I don’t know why so many MO started high and then go down.
Hugs for your appointment, hope it goes well.0 -
Thanks for the info. Hearing others' experiences is reassuring, as I've read so many frightening comments about Verzenio. My MO tends to be dismissive about SEs, so no help from that quarter! At 75, my QOL is important to me, so hoping that I can manage on 100mg, which I intend to insist on as my starting dose. I have also begun the process of seeking a second opinion just so that I believe I've done everything possible. Think you will enjoy the fact that I am furiously knitting in an attempt to keep myself calm 😉
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@eleanora I found it surprising that just sticking to exactly 12 hours between doses had such a significant effect for me. I was able to reduce my daily dose of Imodium when I stuck to the schedule. Gas-X helped with cramps. Wearing and carrying a spare pair of adult underwear helped with the anxiety of being out and about. We do what we must to adapt. It’s a lot less embarrassing than an accident without a plan.
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