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.
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@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.
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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 juliana1 -
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!
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Thanks @marcials1
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@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 😢😢
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I just started Verzenio 4 weeks ago. On the package insert is says 12 hours apart, but can be taken with or without food. I take the am dose with breakfast and pm dose a couple hours after eating supper- - - just how the timing works for me. I am on the 100mg pills, twice a day, for 200mg dose daily. I am also on Imlunestrant, which can also cause diarrhea. I have been having once a day diarrhea, but have noted that it occurs 3-4 hours after taking the Imlunestrant… not correlating with the Verzenio times. The Imlunestrant HAS to be taken on an empty stomach, so I take it mid-day separate from other meds or foods. I have not noticed any other side effects— I already had hot flashes, and joint pains from arthritis. Other than the continued daily diarrhea episodes, this treatment is not too bad (overall). Especially compared to Enhertu, my last treatment- - - continous nausea, diarrhea, extreme fatigue, mental fogginess like drugged, shakiness, slow movements, hair loss, intestinal gas and belching, heartburn. Enhertu is brutal.
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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!
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@candy-678 - I hope you are as fortunate as going2beatthis (Fay) was and continue to be unaffected by the Verzenio. Probiotics help me (helped Fay, too). I might be noticing a correlation between the calcium supplements I restarted and less diarrhea.
@Rosebessie - I think my cough was worse in early days and improved. Now, I think it's mostly allergies, so Flonase helps me
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@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.
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Thanks @Rosebessie ! Love & hugs back to you!
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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!
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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!
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