Abemaciclib Verzenio for Stage IV
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Hi all - I'm an avid reader of the boards, not so much a poster, but I am looking for some advice / perspective / encouragement re: Verzenio. I started it 2 weeks ago (along w/ fulvestrant) at the 150 / 2x/ day dose. I have felt awful for most of the past 2 weeks. I have had the expected D., took some imodium, and sort of bounced back and forth between D and no D. Also tried the fiber approach -- not sure it helped. But the worst of it has been the exhaustion I feel, complete lack of appetite, some nausea, and the general sick feeling I have had, also abdominal pains/aches. I think of myself as usually pretty able to tolerate medicines and aches/pains (I did okay with Ibrance and letrozole), but this really hit me hard. I met with my MO yesterday, and he told me to stop the Verzenio for now. We're giving me a 2-week break to try to get back to normal, and in the meantime (at my MO's request) I'll check in with my specialty pharmacist, explain all my side effects, and see if a dose reduction is an option. It's hard to explain, but I feel like I have failed. And now, I'm afraid I won't even be able to tolerate a lower dose. Any thoughts / suggestions? (Also, many thanks to those of you I PM'd with a few weeks back before starting.)
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Pirate Girl - even though it's an oral drug, it doesn't make it easy. The first few months are rough. I didn't have the nausea but did have fatigue that I attributed alot to the diarrhea. Also had weight loss. Took me a few months to settle on it. Make sure you take it with food. Harder than ibrance as there are no breaks. I would recommend dropping the dose to 100 mg 2x/day and see how you do. It's an effective dose andan approved dose. As you know, I was compelled to do a dose reduction and it changed everything! Since I started Verzenio I have had discomfort/pain that seems to be tucked up under my right rib cage and it comes and goes..meaning I will have it for a week or two, disappears, comes back..sometimes close to abdomen and sometimes further away. So far, nothing ever showed up on a scan.
How is all your blood work?
Don't feel like you have failed. Sometimes the drugs work out and sometimes they don't. Everyone is different. These drugs fail us, we don't fail the drugs.. These drugs are tough on us!!! ome we can tolerate and others we cannot.
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Hi PirateGirl,
I agree, a dose reduction is likely in order. I know exactly how you feel regarding “failing” but as H&G said, it’s not you. There has been so much positive news about the CDK inhibitors that it was really disappointing when I found my body could not tolerate Ibrance (drastic reduction in hemoglobin). I felt so fortunate to be able to access Verzenio and then the first two weeks on it were horrific. I didn’t have to much trouble with diarrhea but I was so nauseous that I struggled to even get fluid into me. But the dose reduction made a big difference and I am still on it 16 months later. (My run might be coming to an end - dealing with new pain and waiting on scan results.)
This treatment is not a picnic so don’t be afraid to make adjustments to make it more tolerable.
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Thanks Hope and Sadie for responding to my post. I am fortunate that my blood work is generally fine -- that has not been an issue for me. I am hopeful that a dose reduction will work for me. It's definitely encouraging that you both have managed with a lower dose. I am starting to feel better just being off Verzenio for a couple days. We'll see what happens with the lower dose. Keeping my fingers crossed!
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My current problem is low neutrophils below 1 but above .9 so I am wondering if that is not so bad as this has happened twice now and I take a week off and they "bounce" back to just above 1. But I definitely agree a low dose of 100 mg twice a day is a treatment that gives me the best quality of life I have had in quite awhile. I am having a bone scan soon and hopefully it will have good results. I really don't want to go back on Taxol as that wipes me out so just as i am finally back to functioning I would have my next treatment. After Verzenio my oncologist says I would have to go back on Taxol. I was talking to my pivot nurse and inquired about clinical trials and she says that with COVID they are almost at a standstill. Thanks everyone for the reply to my COVID vaccine question - particularly Husband in Manitoba - hope Quebec follows this approach.
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Well, I didn't even make it 2 weeks on 150 2x a day, I was miserable, having diarrhea, lots of stomach pain and only eating about 1.5 meals a day. The good news is my white count was 3 on day 12, so we gave it a few weeks for my stomach to recover. Now we are starting me at the lowest dose, hoping my body will adjust, and possibly titrating up from there. My onc was very encouraged by all the recent studies on Verzenio and long term outcome. Here's hoping I'm good with the lower doses, I am however adding in metamucil 1x a day just to make sure! Thank you all for your tips on what is working for you!
Also, my insurance decided to change how they pay for these specialty drugs, went from it costing me $30 to $1,900!!! The verzenio card didn't fix that and apparently it was an issue with my specialty pharmacy, took 48 hours to get it figured out. So if you're having issues with costs all of a sudden make sure you question it all!
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Hey Alden -- sorry to hear you had a similar miserable experience to what I have had on the 150 / 2x / day. Based on your point about re-starting on the lowest dose and then possibly moving up from there, here's my question (which of course I did not think to ask my MO) -- why is that approach not the normal course ?? If the lowest dose is effective, and given how harsh these drugs can be, why not start us on the lowest dose to give our bodies a chance to acclimate and then move us up the ladder to a higher dose ? I recognize that maybe the highest dose provides the most effectiveness, but again, why not move up to that over time rather that start from there? I have to talk with my specialty pharmacist this week and will ask -- if I get a helpful response, I'll let you know. Also here's hoping the metamucil helps -- I will try that again when I start back up at a lower dose. Also sorry about your insurance issues -- like we need that on top of everything else.
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Those are very good questions! I had a very severe neutropenic reaction to Ibrance, so the original plan was not to put me on the highest dose of Verzenio....and yet my onc did. I've always had a bit of a sensitive GI system, so I was fairly certain I would have issues. But yes....why don't we titate up and not down? I'm only 5'3" and 130#....I wish they dosed it for weight or something more frequently.
Yeah I spent an unreal amount of time on the phone with customer services last week. Ugh, on top of kids and work who has time for THAT?
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Hi Alden,
As you will have noted from the above discussion, you were not alone on having to bail from the high dose. My MO started me on 200 mg twice a day! That’s the recommended starting dose as a mono therapy, not with Faslodex. I couldn’t hack it I felt so sick.
On the positive side, I have had no issues with neutrophils or hemoglobin which has been a much bigger issue for me.
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That's always been my wonder about doses. Why not go up instead of down after first making us terribly ill.
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An update on my wife's experience after 3 years on palbo plus letrozole, then switching to abemaciclib plus exemestane. Another 6 weeks have gone by, and another 33% drop in both tumor markers. This is after a long but rapidly increasing climb in tumor markers on palbo + letrozole. The switch seems to be working.
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Husband 11, this is good news!!!
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husband,,, that’s awesome news.
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Great news Husband. So happy for you both!
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I am so thankful for Oncologists who keep an open mind and are receptive to trying new things despite a lack of mainstream adoption of an idea. For a long time my wife's Onc was very cold on the idea of verzenio having any advantage over palbo. My wife brought her articles on the subject, and she "explained them away". Yet she came up with the idea of a switch when we were seeing signs that palbo was losing its effect. We are very thankful.
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Hi All,
Posted this on the Faslodex thread as well but unfortunately I am moving on from Verzenio after 16 months. News today is that I have progression to my liver. Back to chemo for me.
Wishing you all good success on the treatment and managing the side effects!
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Hi Saiesservant - so sorry to hear the news on progression. Damn! I will see you over on the liver mets thread. There is also a thread regarding specific local treatments for liver mets if you are considering options now or in future. I am on that one too. Good and very knowledgeable people on both w/ crossover as expected. I assume you are getting biopsy? I will know how I am doing in March on verzenio and if it’s time for me too. Tumor markers check next week amd will see if they are still riding. So far scan is set for March. More pain on right side and it’s a bit different now, so concerning. Will see what the scans have to say..
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Hi H&G
I made note of your reference to ride sided pain and had hoped for the best. Hopefully yours is not related. Mine came on six weeks ago and has definitely been getting worse. My MO is not keen on a biopsy. It’s a bit harder here in Canada and to be honest I got the impression that he is completely focused on beating this back. He wants me to do TMs. It will be interesting to see what comes back. They don’t seem to be sensitive in my case.
Wishing you all the best and sending positive thoughts for low TMs and less pain!
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Sadiesservant, I am very sorry to hear that. I wish you the best in your next course of treatment. No doubt I will bump into you on the liver mets thread.
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Sadiesservant, so sorry to read of the liver progression. Will you do IV chemo? Hope to see you over at the liver mets thread. Lots of good people and info there.
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Husband11, that is just wonderful news!
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Husband11 that is fantastic news!
Sadiesservant, so sorry to hear of your progression. We'll be seeing you on the liver mets thread. The ladies there and on the local treatments thread are wonderfully supportive and knowledgeable, as Hope mentioned.
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saddies,,, good luck on your new treatment. Thanks for all the input and knowledge you’ve given to this thread. I’ll see you still on bone Mets thread I think.
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I meet with MO on Friday, but not sure I'll be staying with Verzenio either. Monday PET results were mixed. Stable in lungs, but new nodes and increasing liver mets. Ugh! I was hoping for good news there, but no. I'll be curious where she thinks we go from here. Think I'm ready to try Piqray again or just go straight to IV chemo.
One good thing is my bones remain inhospitable to mets!
Hate this disease!
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Hi Bliss,
I'm sorry that you are also having limited success with this combo. I know it's quite disappointing, particularly as Verzenio as touted as a possible monotherapy. I had hoped that, even if the Faslodex failed (a distinct possibility after three years) the Verzenio would do its thing. I worried that reducing the dose was one problem but, in reality, I am pretty sure things were starting to go off the rails in July/August. It just didn't show up on scans.
Hope you are able to jump on something else that is more effective.
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So sorry Bliss. Was really hoping this combo would give you some positive results and some time of peace and stability.
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bliss, Sorry you have t go though this. Hoping you do well on your next treatment.
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Thanks all for the well wishes and support. I was also hoping to have more time on this combo. My onc appt has been moved from Friday to tomorrow, so I will find out next steps.
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I have begun to read the posts on this thread, but I decided that the prospect of reading all of them was overwhelming. I am now limiting my reading to the more recent pages. Adriamycin has failed me after 11 months, and rather than trying yet another chemo, my MO and I decided to switch to Verzenio as monotherapy. I will receive my first delivery of Verzenio tomorrow and will probably take my first dose on Saturday. I have bought some Immodium and Metamucil in preparation for what might come. I have to admit that I am a bit nervous about SEs. I am glad that you are all here for support.
Hugs and prayers from, Lynne
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50’s girl —- i just started my 3rd box yesterday. So far so good on SE. I’ve had only 2 incidents of a tummy ach ,, my energy is ok too. The same from before I started. Hopefully you won’t have SE. hugs.
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