Abemaciclib Verzenio for Stage IV

Hi, all, I've been on Verzenio 150mg for a little over 3 months. I was wondering if anyone has gotten an itchy rash from it. It's on my lower legs, and is slowly driving me insane. Not so bad during the day, because I have other things to keep my mind off of it, but at night, it keeps me awake. I see my oncologist the end of the month and will mention it then (so she can see it), but generally don't see it as a known side effect of the Verzenio. I've also noticed a weakness in my legs. I will see my regular provider to check my cholesterol levels, as the last time my legs felt like this was when I started Ibrance in 2017, and had pain and weakness due to the way the Ibrance was eliminated from the body - it took over the pathway the statin normally used, so there was a buildup of the statin. I switched the statin to every other day, and was fine until switching to the Verzenio (that's when the rash started, too, though very small patches at first).

My husband wants me to call my oncologist and ask for a dose reduction, but I want to wait for my scan (end of the month) to see if the Verzenio has done anything first. So I guess I'm also wondering if anyone has had a dose reduction?

That's it. My wife is now done with abemaciclib and is switching to xeloda / capecitabine. Perhaps she will revisit cdk4/6 inhibitors in the future, if the opportunity arises and it seems right, but right now she needs a change in treatment.

Wishing her lots of luck with Xeloda.

I've never heard of green banana powder but in the hospital setting we sometimes have to give patients a powder called Banatrol which I think is just dried banana flakes in a milk based powder to help with diarrhea from tube feeds. I wonder if that is a similar thing? I have seen it work fairly well on some folks.

That is so amazing and in such a short time! 👏

So happy for you. Have a fantastic weekend celebrating! 🌈

Sending hugs and kisses. 🤗 😘

Akj, that is great to hear. Congratulations.

Wonderful news!

Hi Dancemom. Glad you found this thread! 👏. Lots of great info here.

thanks!

Hello all,

My mum has secondary breast cancer with bone met in several areas. She is on Verzenio, letrozol, and xgeva, starting in September 2023. The treatment has been effective so far in reducing tumor markers and size of tumors. However, she has been developing a very bad taste in her mouth since she started the treatment. She does not enjoy eating anymore and refuses to eat… she has lost about 7 kg over the past few months and we are so worried that even though her cancer condition is improving she is weakened due to not eating well. I wonder if any of you have had similar experience with Verzenio and do you have any recommendations? Thank you very much

Marbab - I have had a slight taste change since starting Verzenio. I just don't have the same appetite that I did and food doesn't always appeal to me. Things sometimes taste waxy or metalic or have no flavor at all. I've been on it 3.5 years though and I can't say I have ever wanted to not eat unless I'm having bad GI issues with it. I've had a trended drop in both my red and white cells over the past year and while I have done reasonably well with Verzenio my MO has decided to decrease the dose in hopes that it will boost my energy and decrease the frequent diarrhea I seem to have recently had trouble with. I'm also on fulvestrant and Xgeva so some of the fatigue may come from that. I have been NEAD for almost two years on fulvestrant/Verzenio so I am looking forward to a dose reduction in hopes it will give me a better QOL.

threetree,

This summarizes my experiences on Verzenio: I was on Verzenio for about 2 1/2 years with no progression, but considerable side effects, in part because of the terrible advice ("follow a low fiber diet") I was given by an oncology pharmacist when I first started the drug. Do NOT follow a low fiber diet. Instead I recommend the advice given at the top of this thread by cancer researcher Constantine Kaniklidis. Key strategies that were most helpful to me were: 1.) Dose adjustment - don't hesitate to ask for lower dose if needed 2.) Imodium (anti-motility med). I was reluctant to use it at first, but my GI doctor said I could safely take up to 6 a day, and I only needed one a day or every other day. 3.) Added fiber - I chose to use Konsyl Daily Psyllium Fiber, in large part because it doesn't have any added sugar. But you'll read that others chose Metamicil, or Fiber Con, or etc. Now off Verzenio, I no longer need it. 4.) Lots of water every day. The commenter Going2BeatThis always emphasizes plenty of water daily and I still follow this advice. 5.) RK2020 mentioned stomach pain and I had this side effect. I got some relief with Pepcid AC, which my oncology pharmacist said was safe to use while on Verzenio. I was told it had to be used regularly as indicated on the package (not intermittently) to get much good out of it. Now off Verzenio, I no longer need it. 6.) Daily Probiotic to feed the gut microbiome. I think probiotic supplements are a waste. I recommend Greek Yogurt and/or Kefir daily. I still eat both every day. 7.) At times I used Pepto Bismol, Ginger Gummies, or Ginger Tea. I eventually developed low protein and low albumin, but this might have resulted in part from the low fiber diet I followed for 18 months. I had lower leg edema because of the low protein and low albumin. I recommend a substantial protein intake at every meal. My protein target was and still is 100-120gm/day. 8.) I developed low B12 and low Vit D while on Verzenio, so make sure your levels are checked. I switched to sublingual supplements to correct these deficiencies. I also developed an intolerance to FODMAP foods while on Verzenio. I have no idea why, except for the fact that Verzenio affects the GI tract. My FODMAP reaction was severe stomach pain that started about 2 hours after a meal. Avoiding high FODMAP foods was the only effective relief from this pain, and I still follow a low FODMAP diet now. I would have continued on the Verzenio, for as long as I had no progression, but the radiologist who read my abdominal CT scans finally said the visible thickening of my colon wall was likely due to drug toxicity. So I quit and switched to Ibrance and had progression within 3 months. But maybe even if I had stayed on Verzenio, I still would have had progression after 3 more months. I hope you have a long and tolerable run on Verzenio.

Dancemom, welcome to this thread. I found my diarrhea was pretty consistent but manageable with Imodium. After almost a year it has improved greatly.

weninwi, thank you for your post. Your comments resonate with me in several areas. I am one who was prescribed Prilosec with my first treatment (Ibrance) almost seven years ago, and although it is not recommended, I am still on Prilosec. It controls my Gerd best. My oncologist closely monitors everything else and feels the benefits outweigh the detriments for me. I also eat greek yogurt everyday and this helps. I was recommended the FODMAP diet by my gastroenterologist nurse and I agree with you it does not agree with me so I dropped it quickly. Interesting that you should bring this up. Also, what you said about the thickening of your colon wall is also a new side effect for me and we have begun to watch it closely. I fear I may be dropping Verzenio soon although I have been NEAD on it for since September. This week I had a UTI that sent me to the ER. It was discovered there that I have dangerously low oxygen levels so I have also been put on oxygen. Darn! I do live in Colorado Springs at 7200 ft elevation so that is also a contributing factor. So this has not been my best month but I soldier on.

Best of results for everyone here.

going2beatthis,

I wasn't aware of any new symptom to suggest that a new problem had developed. The thickening of my colon wall showed up on CT scan with contrast.The radiologist is the only doctor who offered an opinion on the likely cause...."drug toxicity". My GI doctor, who I saw several times for upper and lower GI tests, only said "we see this sometimes". My MO said nothing...absolutely nothing to either support or refute the radiologist's opinion. Thankfully, the colon thickening resolved after I stopped Verzenio.

intolight, Apologies in advance for posting here but the UTI meds and need for oxygen could be caused by pneumonitis/ILD. I'm not a doctor but have ILD caused by radiation. I was warned by my pulmonologist that many meds for UTIs including ciprofloxacin, nitrofurantoin and other sulfa drugs could put me back on O2 and to check anything a doctor wants to prescribe on pneumotox.com to make sure it's not in the ILD category. Also, Verzenio has a black box warning for ILD. It's rare but can be serious. Stopping the drug and high dose prednisone is the treatment. A chest CT would show lung infiltrates and possibly fibrosis. The radiologist, my PCP and a local pulmonologist couldn't identify mine but my RO did. An MO should be familiar with ILD since it's a possible side effect of almost all treatments for ER+ mbc.

Of course, it could be something else. That fish-out-of-water feeling is scary. I hope they can find the cause and you can free yourself from the tank.