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Abemaciclib Verzenio for Stage IV

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  • Hi @marcials1 I saw my oncologist yesterday and he was puzzled as to why ive got this cough, especially seeing as I've tried everything. So, he suggested I monitor it and try to find out what triggers it. Im thinking it may be related to my asthma so ive increased the number of puffs I take at night. Last night was a lot better so im going to keep that up while monitoring the effect. And yes, thankfully, ive actually learned how best to control the otger Verzenio side effects. I blubdered by having a greasy breakfast this morning too soon (2½hr after my pills), and my stomach reacted with a bit of diarrhea. But I've always got an immodium on the ready so I put that fire out pretty fast. That lesson needs to stick in my head 👍. Otherwise I take my pills with like 2 spoonfuls of plain boiled rice, ½ a slice of wholemeal bread with applesauce, or an equally tiny portion of a bland carbohydrate snack. When nausea hits, I take my antiemitic (like emitino), for gas i take Gasex immediately, followed by Rabeloc for a few days a Gasex. I also ensures to time my doses exactly 12hours apart (or as close as I can). Most importantly I dont eat for 2 hours before and 2 hours after my Verzenio. That important tip i got from the wonderful ladies on this group.

  • Rosebessie
    edited August 14

    @marcials1 , i cant believe it. I replied to your message same day but when I tried to save it, it just disappeared 😢😢. I just checked again and its nowhere to be seen.

    Anyway, im feeling better now. I increased my Asthma inhaler dose and that seemed to solve the cough problem. You see out here in Nairobi we're in our cold season, which to you guys translates to a mild Spring season. I think i was a bit exposed and my chest is still delicate after the botched mastectomy/reconstruction of March followed by a repeat surgery in May. But its all good now.

    This discussion group represents MBC treatment experience and knowledge that is invaluable. I think our Oncologists would learn so much if they were a fly on our discussion wall.

    Sending love ❤️ and hugs 🫂 to all.

  • Hi all! I’m back 😛 Truqap was not for me! After two weeks I broke out into a full body rash and fever. Went on steroids for a week and rechallenged with a lower dose a week later, last Monday. Started with the nighttime dose only to wake 4 hrs later with the rash and swollen mouth, tongue and neck - even while still on tapering steroids. Second ER visit, IV steroids and IV Benadryl. Rash is gone, I have only 2 days left for steroids but no more Truqap.

    I am back on Verzenio starting today. I remember the rules, no eating with it, 12 hrs apart. I’m not a strict as you ladies with my diet so I will keep Imodium in all forms on hand and figure out what I can eat with least discomfort.

    Just a quick question, for those on ‘100 mgs dose’, is each pill a 100 mgs and you take twice a day OR do you have 50 mg pills and take twice a day?? I have 100 mg pills and was told to take twice a day so that to me is 200mgs a day. I thought dosage was total for day - I sent a note to my MO to confirm but would love to hear from you all too. Thanks!

    Let’s the games begin….Again 🤷‍♀️ 😎!!
    Happy Friday!! xo juliana

  • hi @Rosebessie! I did get your message on Aug 12. I planned to reply today and just saw your second message. How is the cough now? Still inder control? Glad you talked with your onc about it. I slip in a greasy breakfast once in awhile too! The meds I am on now (Xeloda) cause crazy stomach issues which are random and come & go. I really hope Verzenio works long term for you. I found that taking it exactly or as close to exactly the same time did help also.

    I agree the discussion groups on breastcancer.org are game changers for us. And you have such a good point that oncologists would benefit greatly if they read our stories and comments. What a great idea! But I am sure they are all too busy. Which is a shame because we end up getting slighted by them. Hope all continues on the best possible road for you!

    Love and hugs to you in Nairobi!

  • @eddiej - My Verzenio pills are 100 mg which I take twice a day.

  • Rosebessie
    edited August 14

    @eddiej I do Verzenio 150mg twice a day so a total 300mg p.day. So far im just being very careful not to irritate my stomach as I take my dose, but im a weak human so frequently naughty 😜. I generally avoid but sometimes do friend and spicy food albeit far away from dosing time. I notice the effect though. So really, its best to avoid (sigh 😣😣)!!!

    MBC treatment extends our lives but the Cancer diagnosis steals so much of life's fun from us 😢😢

  • @eddiej - I stopped Verzenio last December, but when I took it I initially did 150 2X a day, and then after about 5 months, the dose was lowered to 100 2X a day. Hope this helps. Good luck!

  • Hi @candy-678 I follow this thread, although I’m no longer taking Verzenio. It was my first line of treatment and I lasted for I think a year and a half on it. After getting the major side effects under control, I was actually feeling ok but my cancer mutated and I had to go onto the next line of treatment. I started at 150 but went diwn to 100 which made all the difference in the world. It sounds like the other medication you are taking throws a whole other snag into it regarding timing and meal requirements. I wish you the absolute best. And thanks for the warning about Enhurtu. I think I am beyond that line of treatment, but good to know!

  • @seeq thanks for the tip. Ill have a word with my Oncologist this week and see if the Fluconase can help with my nose. I think there's something going on in there because it feels dry, irritated and sore every morning when I wake up. The irritation causes mucus accumulation which forces me to blow my nose, from which I see little drops of blood on the tissue. Tge experience is not overwhelming in any way but because foreign to my body, I just want to get rid of it. May our @going2beatthis Fay's blessed soul continue to rest in eternal peace. She had such a lovely presence 😍 💕 💖

    @marcials1 My prayers are with you. Sending you love and hugs ❤️🙏🏻👍 @candy-678 Welcome the world of Verzenio world and may your journey on this road be a smooth one. So glad you've got it under control so far.

  • Thanks @Rosebessie ! Love & hugs back to you!

  • Hi all, Just finishing my second week on Verzenio. The first week was great and silly me thought this will be a breeze. The second week, not so much. Interestingly, I only had one bad episode with Big D that I blame myself for not being prepared- I got cocky. 🤷‍♀️🤪 Multi-symp Imodium does the trick.

    However, for the past 2-3 days, I am being plagued with serious fatigue most of the day. It comes on like an hr after the morning pill. I lose all incentive to do anything and I find myself napping on and off all day if I have nothing to do. I have an aft wedding tomorrow - I’m hoping the prep and being with friends all afternoon and evening will keep me going 🤞. I also am finding that I get serious low blood sugar symptoms - shakiness and hunger pangs- if I haven’t eaten in a few hours. I have to start eating little meals rather than just lunch and dinner I think.

    Am I alone with these side effects? I see my MO on Tues so will be asking him and team as well. Just wondering…. Praying these se’s disappear with time 🙏

    Hope everyone is having a lovely Saturday night!

  • I don't take Verzenio anymore, but I did for about 2.75 years. What dose are you on? I started with 150's and got real fatigued. After a few months, my oncologist lowered it to 100's and it was much better, and I was able to tolerate it pretty well, until it quit working. I also got some stomach pain and weird stomach feelings from time to time, but never really had the D problem. I think part of the reason I haven't had real big problems with diarrhea and nausea/vomiting with any of these drugs is because I eat fresh unpastuerized sauerkraut every day and also probiotic plain Greek yogurt. Just some thoughts. Others will weigh in too, I'm sure and you will get a variety of ideas and possible helps. I really hope this works well for you. It can give some people a really good run, so keep trying and good luck!

  • @eddiej Hi - ditto what @threetree said! I started at 150 and went to 100 pretty quick. I was on Verzenio for about 1 and a half years. I eat probiotic greek yogurt also and drink kamboucha every few days. Did on Verzenio and continue now on Xeloda. I had pretty much gotten the big D under control and was settled into a routine. My cancer then mutated and I had to move on. Hope you can stay on Verzenio and it works well for you.

  • thanks ladies! @threetree @marcials1 I am also having issues with my breathing, - feels like a vice across my chest. It got worse each day last week with little exertion. Saturday the worst - between the breathing tightness and my sleeping on and off alll day, I decided not to take the pills on Sunday so I could attend the wedding feeling hopefully better. It worked and I was even able to dance a bit ( I am usually a dancing fool at weddings… well, nice memories)

    I am worried about interstitial lung disease and permanently scarring my lungs. I have notes out to my MO and pulmonologist.
    Maybe I can go a dose lower on V… on 100mg now. To be continued!

  • @eddiej dancing fool here too! Not good at all but used to be fun! I never had the lung issues but I know many did. Glad you are reaching out to MO & pulmonologist. Hope you get answers fast!

  • I had the lung issues with Verzenio. Had to switch to Xeloda.

  • I have been on Verzenio since I was diagnosed on 9-11-25. The only side effect I have is diarrhea. Then I take Loperamide to control it. Besides that I stay in pain 24/7 from the top of my neck to my lower back. I am unable to stand no longer than 10 minutes then I have to sit down.

  • @cancersept2025 - I am so sorry to read your story. What dose are you on? Have you considered or been offered a dose reduction? Hoping you find a solution very soon! Verzenio can give many people a good long run if they can manage the side effects. Wishing you lots and lots of luck 🤞!

  • @cancersept2025 have you had this pain since being on Verzenio? I haven’t been on it for over a year. I only had the diarrhea and other small side effects. Definitely no pain. Where are your mets? Are they in your spine? I feel like you really need to talk to your oncologist about this.

  • Hi again @cancersept2025. Like @threetree mentioned a lower dose might help. I went from 150 to 100. I had a mutation so had to switch to Everolimus and now Xeloda. I hope you get to remain on Verzenio. Please keep us posted. Very best to you.

  • Rosebessie
    edited August 28

    Hi @Verzenio ladies, im just completing month 3 on Verzenio and ive learnt some good lessons. Main one is that i must be humble with this drug or else it will humble me big time. You see, I was also being very cocky, thinking ive got it figured out. Today I got a massive bout of good old D, im learning the hard way that this ride has some major speed bumps along the way. LOL!! And the nausea, fatigue, bloating etc persist altho i keep them in check with the various meds. @moderators, Ref our Monday meeting, I'll restart the conversation about lowering my dose when I next see my MO. These side effects have overwhelmed me this week.

  • Hi Verzenio girls, ive been prescribed Ciprofloxacin for a UTI. My Oncologist recommends that I don't pause by Verzenio despite the known risks of a drug interaction between Verzenio and CYP3A4 drugs. Id just like to hear from anyone how smoothly this went for you and/or any adverse interaction this resulted in. What's the experience. Im always very nervous about drug interactions in general. Somebody please help 😭 😫 😩

  • @Rosebessie - Oh Rosebessie, I'm real sorry about your situation and I understand your dilemma, but unfortunately, I don't have any info/advice to offer. Drug interactions are of real concern to me too. I never needed to take an antibiotic the whole time I was taking Verzenio. I do know that a lot of other drugs affect the CYP34A processing, and it just might depend on which ones. I think with some the intereaction is more likely and stronger than with others; I just of course have no idea which ones. I would think that the doctor would have taken all of this into consideration when he said he felt it was OK for you to take both together.

    I'm crossing my fingers that someone "in the know" comes along and helps you out here. Feel better soon!

  • YhThanks @threetree 😭😭😪. My Oncologist prefers i dont take a break but Id just like to hear the experience of ladies here regarding drug interaction side effects.

  • Hi @Rosebessie I had to take an antibiotic when I was on Verzenio.

    I was told by my oncologist to stop the Verzenio while I was on the antibiotic. I did stop and also did a no-no and quit my antibiotic after five or six days. And I went back on the Verzenio.

    I’m sorry, this is probably not helpful but it is my experience. I hope you figure out what works for you and I would maybe check with another oncologist for a second opinion?

  • Hi @marcials1 thanks for sharing. May i ask why you decided to quit the antibiotics? Mine is a 5 day course of antibiotics and I definitely have to finish the prescription because UTIs can get nasty.

  • @Rosebessie Hi afain!
    I decided to go off my antibiotics because it was a seven day prescription and after three days I had been feeling like it wasn’t the right thing for me to be taking. The antibiotic was more as a precaution for a bladder infection. I went in for some additional testing I forgot what it was called. In any case I still have on & off bladder issues related to my metastasis. I just went with my gut feeling and knowing my body. But if I actually had a definitive UTI or bladder infection, I would’ve stayed on the antibiotics. But my oncologist, like I said, told me not to take Verzenio the at the same time. Also, I do not remember what antibiotic I was on. Sorry I’m probably not much help.