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Verzenio

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H was your experience taking Verzenio???

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  • roxiea
    roxiea Member Posts: 7
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    I took the max dose of Verzenio for 12 days and my doc had me stop. Seemed like an eternity. I had diarrhea, nausea, unexpectedly and without warning. It started on day 3. The day I stopped, I went to ER for rehydration. 2 bags fluids, urine, blood work. 2 days later, another ER visit for 2 more fluid bags, blood, and ultrasound of tender upper rt abdomen. I have an inflamed liver, high liver numbers, dark urine with a bad smell. I subsequently got another UTI and sinus inf at the same time. Back on antibiotics. I’ll be back on Verzenio at a lower dose, as they claim side eff are less with lower doses. We will see.

    No Tylenol with liver issues.

    I find the meds change my attitude and make me not care about many things, like if I open curtains or leave them closed. If I drop something, I don’t care if I stop to pick it up, or leave it for hubby. That’s not like me, but I feel I have more important things to deal with, so I let it go. Sometimes it will take me an hour to actually stand up and go to bed. I feed hummingbirds. It may take me 3 days to make food, instead of immediately. It’s weird.

    I’m told my doc doesn’t get back to me bec she has many patients. Is that true for everywhere, or just here in CA? It makes me wonder about the level and quality of care. My case goes before a tumor board, which sounded good in the beginning, but does that really mean anything, or just additional eyes for input? Unclear to me.

  • threetree
    threetree Member Posts: 1,460
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    I have exactly the same "I don't care" problem with Verzenio. It's been just about a year now and I realize it has caused me problems. A whole lot has not gotten done because,"I don't care." People are starting to hassle me about getting things done, and they really don't understand when I tell them " the drug made me (not) do it", not that I blame them.

  • seeq
    seeq Member Posts: 1,128
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    I have been on Verzenio 3 yrs and 9 mos. I was on the full 150mg, plus anastrozole, until it kicked my liver mets to the curb (7½ mos). Then, I dropped to 100mg. The first few months were no joke - lots of sleeping and lots of time in the bathroom were the biggest SEs -- but it did the job. Now, I'm just waiting to see how long the good news will last.

  • roxiea
    roxiea Member Posts: 7
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    Thanks for the input. I think one of my biggest issues is I feel like the "you can't have these foods" list is so big that my entire diet must change drastically. It says no cold/hot drinks, only room temp. During winter, I drink hot chocolate or tea to warm my hands, and my insides. If I drink that at room temp, it would be useless and weird. I eat high fiber to avoid constipation, and now I must avoid all fiber and dairy. No oatmeal or cereal w/milk. No ice cream. No spices, ruling out store-bought rotisserie chicken. It's impossible to find precooked foods without some spices. And, these rules may only be for a short time, but they don't say that. My new diet would be basically potatoes, rice, and bread. All the things I've avoided all my life.

    I also think the lack of contact w/my ONC may be getting me down. I was on Verzenio 12 days, and I've been off 7, so maybe I'm complaining too much, too soon about things that aren't clear yet. But I'm thinking these things will affect me. Will they change me permanently, or will I return to being the same person, with the same diet, as before this all started?? I guess I'm bitter.

  • seeq
    seeq Member Posts: 1,128
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    @roxiea ‐ hmm- the only food I was told to avoid is grapefruit and grapefruit drinks, because it increases the amount of Verzenio in your bloodstream. The others sound like things to head off diarrhea.

    Have you read the Abemaciclib/Verzenio for Stage IV thread? You may find some useful info there. Some people have had success adding psyllium husk (Metamucil/FiberCon) to absorb excess fluid in the gut. Sometimes in combination with Imodium. I've taken simethicone (e.g Gas-X or Phazyme) for the cramping. Talk to your MO about your diet restrictions and any meds you might take.

    I learned over time ‐ and notably after my body had adjusted somewhat to the Verzenio - that I can eat most foods, as long as I don't eat too much of them at one time. I can eat a salad with dinner, but not for dinner. I can eat one piece of bacon, but not two. I try not to eat too much of any meat at one time. I recently had the brilliant idea ( <-- it only took me three years) that maybe taking a dairy digestive (e.g. Lactaid, but I take the Walmart version) would allow me to enjoy more dairy products - it does.

    Some people have the D worse than most, and some never get it at all. Hopefully, you'll be able to figure out what works for you.

  • threetree
    threetree Member Posts: 1,460
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    I think the reason I've never gotten the D is because I eat probiotic full fat Greek yogurt every day (Strauss brand from California), and also have fresh probiotic sauerkraut every day also (Firefly brand from Seattle). That's my best bet as to why I haven't had the problem. I do get some stomach "upset", mild cramps, bleh feeling, etc., but no D.

  • roxiea
    roxiea Member Posts: 7
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    You are so lucky. I was told to avoid dairy, but to eat yogurt. I've never liked it, kimchi (sp?) or kraut. I do take a daily probiotic. I should try full fat Greek yogurt, just to say I tried it. There was an entire laundry list of do's and don'ts regarding foods, supposedly directly from a Verzenio site. I couldn't find it online, but it came from my doctor's nurse. Thanks for the suggestions. I appreciate it.

  • roxiea
    roxiea Member Posts: 7
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    All I know is I've enjoyed "normal"food this week since being temporarily off Verzenio, and I'm loving it. Anyone noticed that foods/drinks taste differently? I'm finding my favorite drink, water, tasting bitter, and that's disturbing.

  • threetree
    threetree Member Posts: 1,460
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    I've only ever seen the "no grapefruit" thing about food with Verzenio. Nothing else. If you do try full fat Greek yogurt make darn sure you get the kind with good probiotics in it (organic, grass fed, etc.). A few years ago, around the time I was diagnosed, but not because of it, I started eating a bowl of probiotic yogurt with a banana in it every afternoon, and to this day, it's been the best thing I've ever done for my digestive system. The sauerkraut just adds to the benefit I think. If you don't like certain foods, I suppose the over the counter probiotics are "better than nothing", so to speak, but I try to get my vitamins, probiotics, etc. from food as much as I can. Personally, I would really question that list you got from the nurse. I've never heard of that anywhere before, unless you have more going on medically than the cancer.

  • roxiea
    roxiea Member Posts: 7
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    Here's what she said: Eat 5/6 small meals more frequently. No fast food. Don't take Imodium regularly. Eat soft, bland foods: bananas, applesauce, watermelon, grapes, pineapple, crackers, eggs, white rice, white toast, plain pasta, skinless chicken/turkey. Eat sodium/potassium: can peaches/pears, baked/boiled/mashed potatoes.

    Avoid: Dairy products (milk, cheese, or sour cream), High-fiber foods that cause gas (whole wheat bread, granola, bran cereals, raw fruits/vegetables, nuts, seeds, popcorn, lentils, peas, corn, broccoli, beans, cabbage), Fatty/greasy/fried foods (bacon, sausage, hamburgers, pizza, salad dressings, pastry), Spicy foods (pepper, hot sauce, salsa, chili), Food/drinks that have caffeine (tea, some sodas, chocolate), Too hot/cold food/drinks: eat food or drinks at room temperature.

    So, pretty much, I could eat white bread, rice, and potatoes. She claims this info came from the Verzenio recommended foods, but I found it depressing and unreasonable. Now, perhaps once I got past the initial ordeal, things might settle down, but I didn't get that far.

  • threetree
    threetree Member Posts: 1,460
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    That looks to me like a diet for someone who got bad diarrhea from a stomach bug or something. Maybe the nurse gave it to you specifically because you were in the middle of the D. Just normally on Verzenio, most anything but grapefruit is fine. Also, the Verzenio D isn't caused by any germs, so different in that regard too. Verzenio D can still dehydrate you of course, so consuming lots of sodium and potassium makes sense.

  • deltadawnwhatsthatflower
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    Comments so very much appreciated, and especially for us "newbys" who just started on the Verzenio journey. As a nurse myself, I always knew the basic fundamentals of healthy living such as rest, healthy diet, balance rest and activity, lowered stress, etc.

    I am finding that if I stick to those fundamentals, it still helps through this process of chemo pill chaos. Chemo is chaos to my body, so my very own personal knee-jerk reaction is in how I refuse to let it run my show. I just carry it (all of the cancer chaos) with me and try to remember to keep a good stock of incontinence products in my car such as adult diapers, extra panties, wipes, extra pants, etc. The balance of rest and activity has taken extra getting used to since I tend to be more others oriented. But maybe that is not so bad since now it's time for me to care for myself like never before. That fact along with my faith being strengthened are true silver linings if you catch my drift!

    There are lots and lots of thoughts, feeling, emotions, concerns and new normal knowledge I have not even processed after my first yr of being lacerated in surgery (double mas.), poisoned and burnt, in addition to surviving life-threatening post op sepsis and a large axillary seroma that had to be drained five times before I could even begin the proton radiation. So, I participated in watching the NP drain the fld out of the seroma while I watched on the ultrasound and would tell her please don't miss any…

    Long story short, I was so happy I had met my health ins deductible (I'm a RN Case Mgr- so this was a very big deal to me) so early in 2023 and knowing that proton therapy or anything ins gave auth to would be paid for at 100% through the rest of the year was such a relief… until…

    The seroma created a "set back" and I had to wait until Jan. 3rd to start the radiation. you know what that meant. My high deductible had to be paid first!

    So much loss and trial… i am trying with all heart to count the positive changes taking place. Like the very fact that today I am alive!!! Thanking God to be alive today. That's the best start.

    Hugs to you all. I am torn between continuing my career as a nurse in geriatrics as an indep. care mgr or interview for the ABC program at the Y.

    I keep coaching myself… well, I help dtrs (and sons) either way… my heart is leaning towards the dtrs who are going my direction and rediscovering who they are and processing what they are going through versus staying with those running after their dear aging loved ones and needing help to coordinate their care.

    (Wow, I just kept writing… thanks for reading and thanks for writing as I am learning so much from you all!!)

  • roxiea
    roxiea Member Posts: 7
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    Come to find out the suggested diet Was only when you have diarrhea! Jeez. Wish I knew that before I went on about it to everyone. I also wish the Nurse had made that clear up front. Perhaps I missed her comment, and made inaccurate presumptions out of my haste for answers.

    I've been off Verzenio since 4/25, and my normal diet has been pure Heaven. Now the big debate is when to restart Verzenio at 100mg, as I have 3 big dates for functions I'd like to attend. I don't want to wait until it makes no sense for a delay, but I'd really like time to adjust to new meds and its SEs before driving off to a public event that's out of town.

    I'm still very tired most days, having to stop and sit for 3-5 minutes before proceeding. It seems like it's mostly in the mornings before lunch time, and immediately after getting up. Sometimes I have to stop after washing my face, sit on the bed for 5, then get dressed. Then, I go into the kitchen to get my meds, and have to stop and sit for 5 before feeding the dogs. It's absolutely crazy. I start to huff and puff like I've run a marathon.

    If I try to push on, I get light headed, and ready to faint. I'm forced to sit and wait it out. If I just sit still (and sometimes fan if I'm hot) for a few minutes, I feel normal and get up and move on again.

    I also find that once I sit down, I almost don't notice it. After breakfast, I go on my pc to check email and do a little work. While I'm engrossed in the computer, I feel 100% normal, and forget I was tired. But, once I get up to move back into another room, I'm instantly reminded that I'm still tired, start huffing again, and quickly search for the closest chair. I keep fans by every chair where I sit. I feel like I'm 100 years old!

    My hot flashes from Letrozole seemed to diminish, but now we're getting warmer days, so I've made sure to have my fans ready. The hot flashes are fewer than in the beginning, but they are at least 3-4 times a night, and varied throughout the day. The more active I am, the more I sit, and the more hot flashes.

    A pharmacist at Lilly (mfr of Verzenio) said it's probably the Letrozole that's making me tired, when I was blaming Verzenio for all this frustration. Lilly insists that Verzenio leaves your body in 10 days. Well, I'm not sure, but it's taken me over a month to recover from Verzenio and all of it's horrible SEs. I realize that I had some other issues, like 2 infections and antibiotics, not to mention my liver inflammation and high numbers. I guess time will tell. I'm crossing my fingers that this lower dose will be "easy" compared to last time. I keep having high hopes that may well be dashed the first week of the new low-dose Verzenio. Lol.

    Deltadawnwhatsthatflower, you hang in there. You are brave and courageous. I enjoyed reading your story. It makes me feel like my story is much less severe than yours, when I've been whining since this started in 12/23. I wish you all the best, and hope we all have a positive outcome! All the best to everyone in our shoes.

    roxiea

  • peggy_m
    peggy_m Member Posts: 6
    edited July 8
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    Hello all, I am joining the Verzenio club in two weeks, assuming my insurance gets sorted out. Thanks for sharing all these experiences. @roxiea, I too had the impression from the NP in my oncologist's office that I was supposed to go bland (rice/bananas/toast) when starting, so helpful to know that's not necessarily the case. I eat a plant heavy/fiber heavy diet now (and take some other things that can cause constipation — calcium, etc.), so my focus has always been the exact opposite to what's apparently required to combat the dreaded D. Best wishes to all of you for comfortable days.