Abemaciclib Verzenio for Stage IV
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Keep up the good work @lucysgirl !
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@tbos805 Hi. My metastasis is in my bones only so far. I was dx'd in February 2024 after 11 years NED. When you said that things level out after 6-9 months do you mean the side effects? I think everyone is different. At least that is my understanding from all of the women here who I've been following since last year. My side effects come and go. I'm currently in one of my "good" phases. No headaches, no body aches this week, and only mild diarrhea. I do follow some of my old diet, chicken and fish, but have cut out spices, cheese and have recently added probiotic yogurt and sauerkraut. No more wine. I guess the yogurt won't work for you with the no dairy. I do protein smoothies using organic whey protein. I add coconut milk and fruit and I love them. I think they are better for us than those pre-made protein shakes. It's good to hear that your markers are going down. That is something that always makes me feel better.
About the unpleasant running for a bathroom side effect, if I am going to be out of my house for a period of time and I want to make sure to not have an accident I take one anti-diarrheal pill. And that usually will last for at least 24 hours, sometimes more. I try to let it run its course without the anti-diarrheal if I am just staying home because I hate to put more drugs in my drug infested body. I just make sure I drink lots of water and get some bland healthy food into me.
I do have the hair thinning. It went away for about 6-8 months but it's back. I may chop it all off and deal with it that way - nip that problem in the bud.
There are some women on this thread who have been on Verzenio for a number of years. I hope they pop in here and give you some ideas and suggestions. The women here are all awesome and help lots. I hope you get settled and that next year you can go on with your normal holiday plans! Reach out any time and someone will get back to you. Best to you!
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Oh forgot @kathrynw1thasea I saw your comment about making sure your doses are exactly 12 hours apart. Mine almost never are but are within an hour. I'm going to try to be on a tighter schedule. Thanks for that tip!
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@marcials1 I was skeptical that it would have any effect but I was amazed at the difference staying on top of the 12 hour rule made for me.
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I forgot to mention that I get my daily protein target on tough days by drinking Premiere Protein 20mg vanilla from Sam’s or Walmart. It’s gentle on my stomach and doesn’t trigger my food sensitivities.It also provides a good amount of the other nutrients we need.
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@kathrynw1thasea Hi I just wanted to let you know that I had started making sure I took my Verzenio at exactly the same time morning and night and it did make a difference! I wish I had started that earlier. I am now off of Verzenio and waiting to hear what is next. I'm not happy but I have no choice. So off to the next step. Thanks for all of your help and suggestions here. Marcia
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@marcials1 Isn’t it amazing how much difference the timing can make? Who would have thought?
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hi Marcia I’m interested in your diet restriction and what difference you think that makes for you. I have been on Verzenio for almost 3 years and have been getting stomach aches and sometimes very painful gut spasm type symptoms. Has diet helped you? Also do you think the exact 12 hour timing might help this? Thanks for any tips
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@kathrynw1thasea it really is amazing what the strict schedule did for me. Still had some breakthroughs but hardly any. Unfortunately just a few days ago I got pulled off Verzenio. My cancer has metastasized again. I don’t want to elaborate until after my PetCT next week. Going to go off Letrozol also. The two meds I’m going on don’t sound like a walk in the park. But I’ll be reaching out here to find what I can about them. On we go.
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hi @dutchgirl11 I don’t know if you saw in my post above I was just pulled off of Verzenio after approximately 15 months. I found my stomach issues were best controlled by eating probiotic yogurt, probiotic sauerkraut, bananas, and lots and lots of water. I’d mix my water with some decaf green tea also which helped. The timing of taking Verzenio definitely helped for the last few weeks I was on it. I took it at exactly the same time down to the minute. If you read back through these threads you’ll find some other really good information. Although we are all different in our dx and our meds and side effects, I followed some advice with good results. Best to you and please let me know how you are doing.
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thank you for this @marcials1. I'm sorry to hear you will be navigating a new drug but always with the hope this one will be the right one for you. Thanks for the tips on Verzenio. The big D isn't a huge issue for me its mostly the painful gut spasms but probiotics and better timing here I come. Please let us all know what you learn from the PET scan.
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thanks @dutchgirl11 I’ll let you know it goes on the new meds in a few weeks. Right now I’m enjoying being med-free and feeling like myself! Even though a little freaked out about not being on a med to battle the metastasis even further . Will chat soon…
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Hi @tbos805 do you find the food restrictions are helping the gut ache? I have mild gut ache most of the time but every once in awhile a real flare up that requires heavy pain meds. Don't quite understand what triggers the intense flare ups. Have you experienced this at all?
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YES, @dutchgirl11 , that is exactly what I experience. It is a real challenge getting 20 g protein in 3-4 x a day with my restrictions. But I am coping. I seem to have a flare once a week or so and never can figure out what causes it. My onco said that aside from salad greens, this is the most common issue - the not knowing what caused a flare. Although I do have an occasional little bit of gluten so that may be it? I've been on the drugs (Verzenio, Faslodex, Zometa) for 6 months now. For my injections this Friday the 5th, I plan to try a "preemptive" dose of liquid imodium to see if that prevents the inevitable severe cramping and diarrhea. I will report back! And good luck to you.
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@dutchgirl11 - you might try simethicone (e.g. Gas-X, Phazyme) for the gut. cramping. It usually works fast for me...10-15 minutes. I've been on Verzenio 5yrs. The biggest help for me, was a dose reduction to 100mg. I do better if i dont eat really big meals. I also try not to eat too much of certain things at one time ( i.e. raw veggies, cruciferous veggies, meat, greasy foods). I can still eat them , I just eat less of them than I used to. A little is okay, a lot is not. I was having problems with dairy, until I had the brilliant idea to take lactaid. ::smh::
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wow @seeq this is super helpful. After how long on 150mg did you reduce to 100mg? But this is all great information thank you! (Any tips on hair growth mine is so thin!)
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@seeq Super helpful to me, also!! I do take Gas-X. I have never tried Lactaid - will look into it because I need the protein from dairy. There is some amount of lactose in Verzenio so anything I try is too much. As mentioned, my cancer physiatrist wants me to get 20 g protein every meal which makes small portions especially hard when I am calculating how much protein in each thing to get 20 g - which I learned is the minimum for "protein synthesis" to kick in for muscle building and bone healing. I go REALLY bland a day or two before Faslodex injections. Also, I must really increase hydration before monthly blood tests which are absolute torture for me. Appreciate the suggestions.
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@dutchgirl11 - I reduced to 100mg after I was NED - I was too chicken before that. The studies show equal efficacy at the 100mg dose - there's a link to the study earlier in this thread. About the hair, it seemed like all my brown hair fell out on the 150mg, while the grey held on for dear life! I lost at least ⅔ of my hair. Some grew back on the 100mg, but it's still only about ½ as thick as it was. The dose reduction helped reduce the fatigue, too.
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OK that’s helpful. I will scroll back to find that study where 100 mg is sufficient. And interesting about the hair. I kind of feel like a wig is in my near future.
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@dutchgirl11 I want to see that study, too. My onco wanted to start me on 150 mg but I reminded her how sensitive I am to drugs so we started at 100 mg which provided huge drops in my CA markers, such as 88 points in one month. The monthly blood marker numbers are now much lower, but still going down slightly at 6 or 8 points at a time (worrisome) so I doubt I can reduce to 50 mg at this point. I have about half my hair, still thinning a LOT. I have been using a bit of mousse now and then which gives a thicker look.
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thank you @tbos805 . And you are tolerating 100mg fairly well (except for this dang hair loss, me too). Will discuss lowering to 100 for me at next appointment. Thanks so much
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Sorry for confusion, @dutchgirl11 - I'm struggling a lot with weekly diarrhea flares, diet restrictions for stomach pain (no gluten, dairy, sugar, legumes, nuts), and getting 20 g protein/meal - some of which are mentioned above. My onco has been monitoring my issues and I will be discussing this again at my monthly faslolex injections appointment on Friday. I'm starting my 7th month on the meds. It has been a challenge but I'm very grateful for the treatment, of course, and will keep trying ways to ease the symptoms.
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ok @tbos805 sorry for my repetition! I’m new here and navigating The message boardis still a work in progress! But I appreciate the information on managing the food to help with gut pain
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Hello everyone,
I was on Verzenio for two years and I had to take a daily dose of Imodium Multi symptom Relief. Walmart has a generic of it that is much cheaper and just as effective. I had major stomach issues on Verzenio and this was the only thing that helped me. I wanted to share it with you all as something to try.
I also lost hair on the 150 dosage. I've been off of it since March of this past year, and it is very slowly growing back in.
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@marcials1 I’m so sorry to hear about the metastasis. Do keep us posted on how you are doing. I hope you’re getting the support you need from those around you. Hugs and prayers.
Ladies, I also found gas-X helpful for the cramps on Verzenio. My solution to the protein problem probably isn’t for everyone but I used a meal substitute protein beverage (Premier Protein at Walmart or Sam’s). I tried to limit it to only one meal a day, but on the rdays I just couldn’t stomach food, it got me 90g of protein I could tolerate.
I switched from 150 to 100 on Verzenio early in my treatment. I was having so much trouble with the big D that I had taken a drug vacation without consulting my MO. At my next visit, we discussed it and she told me that there had been study results showing equal if not better results on 100mg and the suspicion was that patients took the medication more consistently on the lower dose. I never asked for the name of the study because it made perfect sense to me that taking the medication consistently without breaks would be more effective.so the information may have originated with me and I apologize for not getting more information. I’ll ask at my next appointment and report back.
Hugs to everyone.
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Thanks @kathrynw1thasea ! I never thought I’d say I wish I could stay on Verzenio! I’m now having liver enzymes climbing with no explanation. I’m going to go look for some past threads on this as I recall seeing some others with this issue. Tumor markers are of course climbing too.
On Verzenio my drop from 150 to 50 then up to 100 was tolerable. Like you said being more tolerable makes it easier to stay on and less likely to skip when you feel like complete crap. I heard the same 100 is as effective as 150. For me it turned out to not work but that’s just me.
Best to you all and keep at it!Marcia
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Hi friends, these gut cramps on Verzenio 150mg are driving me a little bonkers. I don't get Big D with them they are just painful and consistent. Are there women here who have reduced to 100MG and noticed an improvement in symptoms? What about the nervousness around reducing the dosage on this medication.
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Hi @dutchgirl11 - I use simethicone (e.g. Gas-X, Phazyme) for cramping. For me it works within 10 minutes. Of course, check with your MO. I also requested a dose reduction. I waited until I was NED, only because I was too chicken to possibly mess things up. Not really rational, but that's were I was. The dose reduction did not completely resolve the Big D and cramping, but it definitely helped. The bonus was a little extra energy and some hair regrowth. I've been on Verzenio over 5 years.
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11-05-2025 Hi @seeq @dutchgirl11 @marcials1 @kathrynw1thasea @kotchaj @marcials1
@tbos805 .
Just want to thank you all for speaking of your experiences with drug Verzenio.
Right now, I'm on anastrozole only (recently dx'd malignant pleural effusion). But have finished heart and blood work-ups and am due to visit the onc office next week to determine if they want me on this medication or not.
I'm really, really, scared about the drugs because throughout my life I've been so allergic, and chemically reactive to stuff. Then add onto that, being in my early 70s what's that going to cause?
Thanks again, and looking forward to conversing with you all.3 -
@dutchgirl11 I just had to pop in to check on you and your G.I. issues and share something that changed my life!! In fact, I was on this message board back in September looking for others who had experienced CA 27-29 marker increases as I just had after 6 months of huge declines. Anyway, I was scrolling through Verzenio messages and saw someone's "CHANGED MY LIFE!" in all caps and stopped to read (I cannot find that thread now to thank her!). She mentioned the same diarrhea and stomach pains and cramps I had been having since I started Verz in Feb. and she tried skipping breakfast and it worked! I tried it and CURE!!!! Of course it makes sense that eating in the morning around the 8 AM dose could be affecting things. So now I have been over two months with no anti-diarrhea meds or Gas-X or cramps or all-day stomach ache. Which has me thinking that if my CA 27-29 had not increased in September I never would have gone skimming through the Verzenio messages and would still be having G.I. problems that were just so depressing and upsetting. My markers went up in October, also, but November was down 20 pts, confirming my onco's feeling that it is "just noise." I just have a banana when I get up for taking my multivitamin and then a 20g protein bar snack at 10 AM, regular lunch and dinner - both 20g protein, also - no problems. I hope that helpful tip provider reads this and hears my big thank you!!! So helpful!! And I'm very grateful for the sharing of experiences and caring here.
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