Abemaciclib Verzenio for Stage IV
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@seeq and @threetree - I did not gain any weight when I did a dose reduction from 150mg to 100mg. I did, however, despite not eating more than before, gain weight when I stopped walking 2.5-3 miles a day because of an issue with the tendon in my lower leg. This weight gain, I think, is from the aromatase inhibitors (in my case Letrozole) which are definitely known to cause one to gain weight.
For those who have not had a chance to listen to the "Updated results from the MONARCH 3 study on Verzenio" podcast which can be found at , I found it to be very encouraging!
Click on the down arrow by sections. Verzenio is the last one listed in the right hand column.
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Hi all,
I begin my first dose of Verzenio tomorrow a.m. I'm starting with the higher dose, so I take it twice a day for now. Even with IBS-D, my MO believes this is the best med for me to take to stop this crap in its tracks, so I'm on board.
I know some of you posted that you take probiotics, etc. which seem to help diarrhea; I've ordered electrolyte sugar free powder to have on hand, and the rx came with two packs of loperamide (according to some research I did, up to 90% of patients wind up with loose stools).
Question: what do you do daily (regimen) to counteract the runs, how long did it take (if you got them) before you got the runs, and did any of you wind up with mild or no diarrhea with this rx? What should I prepare for and when should I prepare for it?
I could start taking it this morning, but husband and I are going to the Grand Canyon (we live close) for a kind of transition day-I stopped taking Aromasin yesterday (the reason is obvious-it stopped working), and I would like one day off before I begin on a new more powerful, hopefully successful medication.
Thanks all,
Claire
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Hi Claire, In addition to explosive diarrhea there can be long bouts of uncomfortable intestinal cramping - two Imodium daily helped. In addition to CDK4 and 6, Verzenio inhibits CDK9, which is needed in highly proliferating cells, ie the gut, as well as cancer cells, and so this may be why Verzenio is stronger than Ibrance.
I could not handle the full dose, where many people say the fatigue is too high, it just made me very dizzy… Good luck!
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Hi @claireinaz, In the beginning the diarrhea is overwhelming and can some days come on explosively. One day I was in Home Depot with DH and suddenly felt those downward churns. in my tummy so I went to the ladies room actually squeezing my butt cheeks as tight as I could. Thank goodness I landed on the toilet and it explosively came on. I sat there a good half hour waiting for it to end. I texted DH to let him know because we were standing at the check out counter when I suddenly disappeared to b line it to the rest room. These sudden onsets keep me from planning going out a lot. I’ve learned over the months to know my onset times, read, my tummy churns and control it better. I’ve been on it a year and have been stable. I really believe the Verzenio has kept me from progressing so I put up with it. My Onc last visit said. I can reduce my dose to 100 mg twice a day, so I’m hoping this will help. Some days I skip a dose if I have an important event going on. On the monthly 2 hour drive to my Onc I don’t take my morning dose because we are at the hospital for several hours between labs, onc, and the shots in the chemo lounge
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ugh, the last three days have been exceptionally bad for Verzenio D. It hasn’t been this way for months. I’m living on Imodium and staying in my bedroom. The master bath is next to my side of the bed so another day hanging out on my bed with the pups my IPad, and the TV. We have 3 bathrooms in my house. 2 on the second floor and one downstairs off the kitchen. Ha😆which makes it convenient when I am cooking. But I feel most comfortable up here in my room. I hope you ladies have a day of peace without struggles🩵
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Hi @claireinaz, I never got diarrhea from the Verzenio. Started at 150 mg in March 2021 and reduced to 100mg in March 2022 due to extreme fatigue. I take it in the morning after breakfast and after dinner with lots of water. I also take a probiotic (Bio K+) before those 2 meals.
As for Imodium, if you are not used to taking it, I would recommend starting out with a low dose and see if that works. You can always take a second pill in an hour. I have taken it once or twice and was constipated for a 1 or 1 1/2 days after taking it.
Am 🙏 that you don't experience the big D.
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Claire, ditto what goingtobeathis says about Imodium. Only take one and wait and see, as they can cause constipation real easily. It can last a good day or two, with just one.
I too never got diarrhea. Always have at least a quarter cup of fresh, refrigerator ( organic) sauerkraut with lunch for the abundant probiotics, and a 6 oz serving of really good organic live active culture yogurt with added fruit and nuts every afternoon, also for the probiotics. Started Verzenio around May 1 at full 150 dose and am in the process of switching to 100, due to fatigue. Most dose reductions I understand are for diarrhea, then fatigue. I feel super lucky to have not had the diarrhea and can only credit the fresh whole food style probiotics for it so far.
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I just finished two full weeks of Verzenio 150.
I take an Imodium (with simethicone) every other day and that seems to do the trick, except for one day where it surprised me at lunch at a restaurant. Thankfully, the bathroom was open, I was the only one in there and once I eliminated that, there was no more. I did take the Imodium two days in a row in the beginning and regretted it because then I couldn't poop! I eat an oatmeal muffin every morning and drink some "Good Belly" probiotic juice. This has kept me regular to my original schedule of every morning before work.
My biggest problem is nausea. I just got back from the MO and she is having me experiment with 100 in the morning and 150 in the evening. If that doesn't help the nausea, then I am allowed to reduce it to 100 two times a day. I can experience nausea all day or none at all but mostly it comes and goes all day long. I have tried Reglan which made me terribly fatigued and I couldn't lift my body off my bed. Awful! I tried zofran which does not work. I actually found a little relief with Famotadine (Zantac) which gives me the off/on days (except for the days where nothing works). She just prescribed Compazine to see if that works but I made the mistake of reading the side effects and it sounds like that will make me fatigued too. I can't pick it up until tomorrow anyway. As a result of the nausea, I have become a little dehydrated and lost some weight, which is not OK. I need to get this nausea under control. I would take any suggestions on that.
I also experience some fatigue but mostly only if I sit down. If I keep moving, it isn't too bad. I am still working so fatigue is not an option. I do tend to experience it more for an hour or two in the afternoon but it usually passes. I have had a few days where I come home from working a 5 1/2 hour day and go right to bed for the rest of the day, but that has only been two days.
The best news is that when I was on Ibrance, I didn't even make it two weeks and my ANC was below .5 and my liver numbers were wonky. After two weeks on Verzenio, my ANC is fine (it actually went UP) and so are my liver numbers. What a relief! As a result, I am willing to try and work through these side effects.
I wish all my Verzenio sisters the best!
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Hi @dulcea,
Another BCO member that also has MBC has previously mentioned that Enterade helped her with nausea. Not sure if it would similarly work for you, but they do have a reimbursement program so it's something you could try and see if it provides any additional relief for you.
Warmly,
The Mods0 -
Thank you so much Mods! I will certainly look into it. The side effects from the nausea meds are scary!
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They are! And it can be difficult to keep on weight, especially with the nausea. Hopefully this provides some relief. From what the member shared, one has to consume it daily so it might take a few days to build up. If you feel up to popping on one of our MBC Zoom meet-ups, you might catch her and she can share her experience. The next meet-ups are tonight at 8:30pm EST and one tomorrow at 4pm EST this week for MBC specifically.
The registration links are at the link below:
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Thanks all, I guess I will see what happens. With IBS D I've already experienced disaster pants before (I carry a crash bag with pants, underwear, pads, and cleaning wipes everywhere I go, from hiking to driving), so I'm used to taking a lot of Imodium already. It slows things down, along with fiber (20 g. a day,appx) I've been taking to allieviate IBS-D symptoms. I have yogurt on hand and I do like fermented foods, but cabbage exacerbates my IBS gas, bloating etc. I guess it's lots of plain yogurt (which I eat nearly every day anyway, with fruit, lemon juice and some stevia).
I hope it doesn't make the IBS-D worse. She insisted she wanted me to hang in there on this higher dose (150 mg 2x a day but emphasized we can adjust doseage too). Praying for mild symptoms.
Claire in AZ
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Hi All. I haven't responded to this thread in a while so I thought it was time. I have been on Verzenio for 1 1/2 years now with one year at 100mg. It is keeping me stable. I do have daily diarrhea. If I need to go more than three times in a row I take an Imodium. If I plan on going out for some time I also take one as a preventative. I don't have any problem with constipation but I do get nausea. I will take a zofran if needed and seem to be fine. I also eat saltine crackers in the evening before bed (while watching TV) if I need to. It seems to help. Lately I have been extra fatigued and weak. I am considering calling my MO for a possible infusion for electrolytes but of course it will take time and it is almost Christmas. I have PT tomorrow for my back at a location away from the hospital so it would be a drive. I know…I need to take care of myself so I will think about it.
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Can I ask how often people have their scans done?
I've only had one PET scan so far and already feel the "scanxiety" about having another one. My MO wants me to have another one pretty quick since she thinks that my cancer is running rampant through my body at a fast pace (with really no reason to think this). I have only taken something (Ibrance or Verzenio) for 43 days and she is talking about the next scan within a couple weeks.
My second opinion doctor suggested I NOT have one too soon as treatment needs time to do it's work. Doing it too soon could cause more problems with changes in treatment.
Does anyone know of any published material about when to have regular scans?
Thanks.
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I’m curious how many of us took Verzenio at stage III and for how long before becoming stage IV?
How long have you been on it at stage IV?
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dulcea, I have scans every three months and I have had them all…PET scans, CT, MRI, etc. It depends what shows up on one scan and whether I need a different view. I started with PET scans every three months for the first four years (stage IV) until progression (I was on Ibrance.) When I moved to a different state and a different onc, my new MO did different scans but throws in a PET occasionally to compare. I have a CT scan scheduled for next week. I have been on Verzenio for one and one-half years now and have been stage IV for 7 1/2 years. Verzenio is my fourth different med with Stage IV.I was diagnosed stage IV from the beginning (de novo.) I have been told it usually takes three months for a medicine to show results, but I am not a doctor. Best wishes for good treatment.
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Thanks @AJ and @intolight for your responses.
Congrats(?) AJ on your year anniversary. It looks as though Verzenio has worked for you this entire time. That's great news.
I always thought the PET scan was the gold standard for cancer but it seems it isn't after reading both your responses. I wonder what the difference is from one scan to another, or if certain scans are done for different body parts? I find it confusing. When I was first diagnosed as stage IV, I had an MRI (for another reason which found cancer on my spine), a bone scan and a CT scan. After that, I had a PET scan, which turned up a few more things but didn't show anything in my skull, which the bone scan did.
intolight, I have read at least three months elsewhere but have also seen 4-6 months to get a good idea whether the treatment is doing it's job or not. I think I'll wait the three months at a minimum unless I begin to have symptoms that point to progression. BTW, 7 1/2 years is great! Keep it up!
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Dear all,
Day 10 of Verzenio…150 mg 2x a day.
Sung to the Beatles/Geo Harrison tune, Here Comes The Sun:
"Here come the runs, do do do do…"
"Here come the runs, and I scream…"
"It's not alright…do do do do do do do do do do do doo…" 😉
Anyway, yes, the D has started but so far morning only, and after the first round I take a dose of Imodium and it seems to stop. So far anyway.
I did notice a low grade headache from time to time, which I know is another side effect, and some relative sleepiness or maybe low energy… I didn't have before, but that could be holdover from the indica gummy I take to sleep every night, too.
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@claireinaz Thanks for the giggle with your song.
Good luck with your new treatment. I am on day 26 of Verzenio. I started out doing OK with the D and taking Imodium every other day and pooping every morning, but now it's all over the place. I was up all last night going - instead of sleeping- and today I am very fatigued. I have been drinking an electrolyte drink and will have a liquid probiotic later.
Mainly, my worst symptom has been nausea but that seemed to get much better when I reduced my morning dose to 100 but have kept the night dose to 150. Maybe you won't need a gummy with Verzenio when/if the fatigue hits, but I hope it doesn't.
I hope Verzenio treats you well.
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PLEASE HELP. HAS THIS Happened TO AYONE ELSE?
Hello everyone. I’m not feeling well today so I’m too weak and tired to address you individually as I usually do. I need to share this with you to ask if anyone has had this happen to them? I had a very bad episode this morning that scared me and concerned DH.
After. Reading and finishing my coffee. In bed I started with the bad tummy aches I get every morning. As I went into the bath room I suddenly stared shivering and trembling and got serve chills and freezing cold. I was shaking and rushed into my closet to grab a warm fleece PJ set. I was trembling so much and felt like I was going to pass out from lightheadedness and weakness. My DH got me a heating pad and a warm blanket as i lay in fetal position shaking teeth chattering 🥶under the blanket on my bed. Not only was I freezing and trembling but I was in sudden severe pain in my right ribs and left shoulder, neck, spine and lower lumbar spine, seat bones, his and left femur bone. Such bone pain, DH massaged me with Voltaire’s gel, and got me on a heating pad, and gave me an Ativan… He said I slept for two hours. I woke up feeling weak and headachey. So now I’m feeling upset that this metastatic cancer has totally upe ended my life. Ladies😔
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@shanagirl that sounds like a very scary episode. Did you have a fever? I had that shaking part when I had neutropenia fever. I didn't have the rest of the symptoms though so I can't offer any advice there. I am on the same treatments as you but only just less than a month.
I did have an episode this past weekend where I was weak and tired all day Saturday and couldn't move out of bed all day. On Sunday, I went to the ER. I was a bit better, but was just more dizzy and felt like passing out a few times. After 11 hours, they couldn't determine what it was, but gave me an IV of fluids and that helped, so we came to the conclusion it was dehydration from all the diarrhea I had Friday night into Saturday morning. I feel pretty good today (well…as good as I can feel on this stuff).
I do know the feeling you are having that cancer has upended your life though, for sure. These past few days, I have had terrible thoughts thinking my life is over and all those thoughts that go along with a bad day etc. etc. (I'm sure you've all been there).
Call your doctor and see what they say. Drink water. Go for a walk. Eat your favorite food. In the meantime, I am sending you lots of strength to get through this episode.
Best wishes.
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@shanagirl that really does sound scary. Great suggestions, @dulcea.
Had you just had a treatment of any sorts that may have resulted in this response? We hope you contacted your MO to let them know. We sooooo hope that you are feeling better and this is a one-off!
We're so sorry for what you went through/are going through. Sending you gentle hugs.
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Thank you 💗 for your words @dulcea and @moderators . No fever just extreme weakness lung pain if I breath deep and minor cough , and headache. Also wondering about medication related Pneumonitis. I have a teeth cleaning tomorrow and an appt with my Onc a week from today. I’m wondering if I should call there tomorrow. I’m just resting now and could only sip chicken broth today.
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@shanagirl we always advise people to reach out to their medical oncologist, just in case. Even if on the portal to let them know what happened. Better always to be safe, as we know how complicated things can be. We're here for you!!
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I’M THINKING THE SAME MODS, I’LL DO THAT NOW
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Shanagirl, I agree with the others. Call your MO about your episode. I know it is late now, but I would call first thing anyways or if you get worse, call the oncall nurse tonight. I have not had your exact problem, but I do have extra fatigue and headache today. Watch it closely though as I ended up in the hospital with pneumonitis with similar attack…just not the extreme chills.
I moved down to 100 mg pretty quickly and have been stable on that dosage for over a year now. I manage my Diarrhea by taking an Imodium once it starts or if I am going out for a long time (over an hour.) I have had my share of attacks in the store so sometimes even with best preparation it happens.
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@shanagirl I hope you are doing OK and figured out what your episode was.
I am here to complain. I just can't deal with this fatigue. I am taking 100 2x/day right now but my onc wants me to "build up" to 150 twice a day. I decreased my dose due to severe nausea. The first day I reduced my dose, my nausea cleared up about 90%. Although I still deal with some stomach issues, I have gained back 7 of the ten pounds I lost. It's nice to like food again. I seem to have found a balance with the imodium so diarrhea is really no longer a problem either. Sorry.. off topic there.
How do people deal with the fatigue? I only work 6 hours a day and I sleep very well. I can manage to get my laundry done and keep the house somewhat clean but it's definitely not like I used to do. I don't go to exercise class anymore and even had trouble just walking the dog. I feel out of breath. I miss hiking so much but there is no way I could manage that. I just do what has to be done and thats it. The onc just tells me to keep drinking water. A lot of my red blood numbers were down so I took some liquid iron but that doesn't seem to be helping. The onc said she would not treat me unless my hemoglobin was below 10. Mine was 10.9. Is that the cause of this fatigue? All my other lab results are normal.
How is everyone else doing?
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