Abemaciclib Verzenio for Stage IV
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Hi All,
I started Verzinio 200 mg last Friday 2 X day - immediately I recognized the need for eating prior to taking this med. All was well Friday, Saturday and Sunday but this past Monday, I experienced uncontrolled vomiting 1 hour after a meal and taking my morning drug. It last over 4 hours and it was nonstop, maybe I received a five minute break at the most.
Needless to say I wanted to die. My stomach hurt so much and the vomiting was intolerable. I wanted to call 9-1-1 but couldn't get up to find my phone or make a call. About 4 to 5 hours later it finally stopped. My husband got home and suggested I try to rehydrate myself and call my onc. Her office was closed but I was able to get through the next day and now have a prescription for Zofran.
Has anyone else experienced this? How did you handle it? Did your onc lower your dosage? Besides taking Zofran and eating, any other suggestions? You can imagine I am very gun-shy about restarting this med.
Thoughts?
Amy
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Wow Amy & Chemokaze, I'm so sorry for both of you!
Amy, the first week or so I got a little queasy but it went away over time. Zantac seemed to help. Throwing up would be my worst worst nightmare. Is there any chance you had a stomach virus of some sort? I had norovirus once and that was emptying both ends for about 6 hours then better after 24 hours. I hope the Zofran helps.
Chemokaze, I was told by someone (can't remember who -- I don't remember anything these days) that you can get stronger diarrhea meds. Much stronger than Immodium. Maybe your MO can help?
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Marie
Thank you for the information. I am starting Verzenio next week. I had tried Ibrance ovcer a year ago but my blood counts were so low and my makers were jumping by the hundreds so we stopped.
I have a new team since we moved fro MN to IL. I have just stopped Xeloda due to a new tumor appearing in liver while all my others continued to shrink.
I appreciate the information on stomach discomfort as my onc said toss the Miralax get Imodium immediately.
I hope this drug works. I’m terrified of progression. I have no plans to sit down and quit. I’m going to fight this as long as I can with everything I have physically mentally and spiritually .
Thank you
Beth
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I’m better now after taking 2 immodium the other night....yes, I have a back up Rx of Lomotil that I got a while back, but trying to avoid taking it because of the atropine/ side effects.....I don’t like immodium either, but I did better with it this time...looking forward to getting GI MD help/opinion. Welcome new folks to this thread. I started Verzenio in July and my situation is improving. Hang in there
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I've been off Verzenio since last Monday and am not anxious to start it again after 4+ hours of extreme vomiting. I want to make sure I have no where to be when I do restart it so I don't have to be caught somewhere without a bathroom. I don't mean to sound like a baby, but it feels like I have PTSD from being so sick on Monday and then a severe headache from dehydration the next day.
I do have Zofran now and will be well-prepared when I take Verzenio again. Wish me luck.
Amy
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Good luck Amy....hopefully, this is just temporary! Fortunately, I do not have N/V, just the other end is my issue..
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Amy, is it going any better?
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I took my first dose again this morning 45 minutes after taking Zofran. Fingers crossed, so far so good.
Amy
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Was close to starting a new thread using the title 'Misery, thy name is Verzenio' but decided to add on here instead. Two Imodium stopped me up for over 48 hours, with horrible churning and gas pains before letting loose at which point I took 1/2 loperamide tablet. Also became nauseous, eating and drinking very little for most of the week. Of course, that led to dehydration and feeling weak but a liter of IV normal saline revived me.
Took a 24 hour drug holiday however could only choke down a couple more doses before putting the whole thing on hold. Has anyone tried a dose reduction, say to 100mg twice daily?
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vlnrph, Sounds like you had the same experience as I did -- at least with the Immodium. It was like a war going on in the instestines.
To me Immodium is the root of all evil. Or most evil. Once I stopped taking it, or rather only took a little just before bedtime and only every couple of days, life got better. I'd encourage you to try the same. The Immodium could have also caused the nausea.
Try changing the goal. Instead of a goal of 'normal stool', try a goal of only being in the bathroom once a day. Don't worry about what comes out.
Over a period of about six weeks I'm down to one Immodium about every four days.
Yes you can reduce the dose. But see if you can get this under control first. It took me three weeks, complaining to the gods every day.
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Amy, thumbs up!
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Ladies, is there anyone here who has been on this stuff for more than three months? Has the diarrhea stopped perchance?
Because for me at week 10, it's stopped. My stools aren't 'normal' but i haven't taken an Immodium in more than a week. I can feel the constipation re-asserting itself. I'm wondering if my experience is common
Pam
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Pam,
I haven't completed an entire week on this stuff and it's been close to three weeks since I received my prescription. I can only take one dose, either AM or PM but not both without having stomach pains. I could handle minor stomach aches or pains but these are severe and intolerable so I take 200 mg when I'm feeling okay.
I don't have diarrhea probably because I'm not getting the full 400 mg daily. I wish I could answer your question, sorry.
Amy
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Amy,
I was started on 150 mg. Was on it for three months. Very difficult. I felt sick all the time and couldn't eat. Everything tasted like cardboard and food just made me sick to my stomach. I kept telling my onc that I needed a lower dose as I am very sensitive to drugs and I felt that since I was not a big person, that is, I only weigh about 130 and am five feet eight inches tall with very little body fat, that I just couldn't absorb the drug very well.
He finally agreed and put me on 100 mg. Much better. I can eat again and food tastes normal. I still get diarrhea sometimes but I am trying not to use Immodium and limit my dairy intake. I found that when I was eating yogurt (which is recommended for probiotics) and other dairy the diarrhea got worse.
However, with all the diarrhea I now have cracks at the anal opening from the damage done and having a hard time getting it to heal. Diarrhea causes this as the undigested food and enzymes are harmful to the anus. It's one thing after another.
I did get a very good response from the Verzenio. In the first three months my CA 27 dropped from 783 to 480. I got smaller drops after on the 100 mg but the most recent test shows me staying at about 325. Not thrilled that I am not still getting drops but I am about to have another scan to see if the little bugs are dead. Fingers crossed.
Chats
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I am curious to know what everyone has experienced with their tumor markers on Verzenio. What were they before you started and what are they now. Also, since my Onc seems to think that two months at around 325 is stable. What is stable for you?
Chats
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I gave up on Verzinio last week. Took my AM dose and four hours later was vomiting and had diarrhea AT THE SAME TIME! Needless to say, I was mess and had to go to bed. My sweet husband cleaned up for me.
I wrote to my Oncologist and said I am Done with Verzenio. Besides vomiting and diarrhea, I had a stomach ache so vicious I wanted to die.
I see my Oncologist tomorrow so will see what she has in store for me.
Thanks for all your input. I will report back after seeing her.
Amy
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I have started Verzenio. I was on Eribulin and then switched. I started with 150 in the morning and at night. I was in it for 2 weeks along with anastrozole. After 2 weeks I was very weak and very sick. Could barely function. Dr pulled me off for a week then I started again. Once again at the 2 week mark I was weak and very sick. She pulled me off again for a week. I restart on Sunday at half the dose. I hope that the symptoms are releaves
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I had to insist on being allowed to try a lower dose. According to the package insert/prescribing information, this strategy was required in 20% of patients.
As a pharmacist, I used the argument that, while early phase trials determine the maximum tolerated amount (who are those people?), the minimum effective level has not been established. They would have changed me to Ibrance but I don't want to risk having blood abnormalities.
The data is so much better than for the others in the class, I want that advantage. I'm only on day 5 of 100mg bid however am feeling OK. If tolerated, I will rechallenge at the original strength.
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vlnrph,
So as a pharmacist do you think it’ll be ok to mix the dose .. say take 100 mg in the morning and 150 at night??
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I might try 100/150mg am-pm for a couple weeks when I want to ease back into my original prescription early next year. I only lasted a week at the higher dose so have 14 tablets left...
For NouzayO, the main problem with your plan could be getting the pharmacy to dispense it that way! Those prefilled dose packs assume you’ll be taking the same strength both morning and evening.
However, if that’s what is tolerable and your doctor specifies that schedule, it makes sense to me
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To those of you who are trying to stay on this drug, I’m still in clinical trial for the drug and starting cycle 24. I’m on 100 mg twice a day. I am on Faslodex and get bi- monthly Xgeva shots. The trial also had a second drug which I could not tolerate and had to stop and at that time my dose of abemaciclib was lowered. I have had a total response to my liver lesions- there is no longer any evidence of them. As part of the trial I now have MRI and CT scans every 3 months(originally bi-monthly). I find His drug tolerable. Yes, I have the side effects at different times, but the result has been worth it. Good luck to all who are trying it. Feel free to contact me with questions and concerns.
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I still have three boxes (3weeks) of the 150 mg. So technically I can do it if I wanted to not sure if that’ll make it work better than just the 100 twice a day or not
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I agree with vlnrph that trials establish the maximally tolerated dose but not the minimally effective dose. Docs figure out the second one with clinical experience.
When I started Xeloda MO said "well we usually start people at 3000 but you travel a lot, how about 2500?" And it was easier on me than other ladies were having. Zero idea whether it would have lasted longer if I'd taken 3000 a day. He told me there didn't seem to be a dose effectiveness trend. But who knows?
It's better to take a smaller amount of a drug than to take none because the SEs are too bad. If 100mg works for you, give it a try!
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Just sayin’ hello to the Verzenians! Our thread is so quiet compared to the Ibrancers. I haven’t posted in awhile. Side effects are manageable and have calmed down after 5 months on Verzenio/Faslodex/Zometa, but like several of you I am wondering how effective is the lower dose of Verzenio? I see med onc this Friday. I got EGD/colo for the first time last week. I have gastritis from the Verzenio. Now I am on Protonix and Carafate for a little while. My L4 spine met is stable per MRI in November. PET scan was all clear in Oct. All imaging was re-reviewed in November as there was concern that L4 lesion was growing significantly after CyberKnife, and rad onc was scratching her head since PET was ok, but it turns out the lesion was under measured in MRI back in May when the Stage IV crap started. Well, I can’t complain. I’m here and stable. Thinking of you all...sending cyber strength and peace
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I keep telling ALL of my cells to:
KEEP CALM
AND
DO NOT MUTATE
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Now THERE'S an approach I can get along with.
I'm on my first trip (business and pleasure and grandchildren) on this treatment. After five days only one "I really need to find the bathroom now" episode. I haven't taken Immodium in about six weeks though I have some with me. I'm feeling pretty good about how all this is going.
Scans are one week from today. I get off the airplane and head directly into the scanner.
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I've been on Verzenio since early June when my tumor markers (cea) were in the 300s. They are now at 79, the lowest they have been in years. I take 100 twice a day and have from the beginning. I also get Faslodex once a month and Zometa every three months. I haven't had any diarrhea since thefirst couple of weeks or other side effects from the drug except loss of appetite, but that seems to be coming back now.
My latest scan in November showed bones stable and liver regressing slightly. I'll take it. If I could stay stable on this drug forever, I would happily do it. It has been the easiest combo for me since my original Faslodex regimen in 2011. I am thankful that my onc started me on the lower dose to begin with. I don't know why he decided that dose was best for me, but we've known each other for over 10 years since I've been at this, so maybe he just had a feeling. In any case, I'm grateful. Good luck to all of you.
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Hello fellow Verzenians
My latest scan shows no changes from the last one. So nothing really exciting even though my markers plunged rapidly on the V and then slowed after I reduced to 100 mg. Has now stayed in 300 range past two blood works. I am due for another blood test tomorrow.
Unfortunately the diarrhea did not lessen for me. In fact just before my onc appt last week it was practically daily. We are going to drive to Carmel CA from LA for a week in Carmel. I told the doc and said I had to get this under control. I could just see me walking down the street and having a sudden episode. He said take the next few weeks off and get the D under control and then we will start up again. So my last pill was Friday.
He also suggested another lowering - to 50mg - to see if that stops the constant D.
I am a bit worried but he said that it takes a couple of weeks for the drug to leave your body anyway and since I am for the most part "stable" he didn't think it was a worry. I am supposed to get Faslodex tomorrow.
Question I am going to ask him is why do I need the Fas when prior to the V I was on Fas and it did me no good at all, my markers just kept rising. He said the two work in synergy but what's the point of the Fas by itself?
I honestly don't get it. It would appear from a simply logical perspective that my cancer cells are no longer feasting on Estrogen. Or am I just not seeing something.
Chats
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Hi all, I haven't visited since 2016 when I was first going through treatment. Found out my cancer had spread to my lungs, chest, bones, and lots of lymph nodes 1 year ago. Have been taking Verzenio since August, but also took abemaciclub as a part of a neoMonarch trial in 2015.
I am having a terrible time with dry eyes, and constant watering. I had this happen while on the trial drug as well. I think it has to be a side effect of the Verzenio, but my onc hasn't heard of a problem with this. My eye Dr is also not sure this could be the case. He has given me all kinds of eye drops, which don't help, and he put plugs in my tear ducts, which did not help.
Has anyone else here had this problem? Please tell me I'm not crazy!
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imallright, you’re not crazy!I’m leaving Verzenio soon, but after the second month on the drug, I started with the watering eyes. Now they are watering constantly, so I do believe it is a side effect. I’ve had to tell people I’m not actually crying because the tears roll down my cheeks often. I haven’t checked in with the eye doc, but I had a similar experience on Taxotere when I was early stage. So I’m sure it’s from the drug.
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