Abemaciclib Verzenio for Stage IV

16465676970103

Comments

  • seeq
    seeq Member Posts: 1,172
    edited March 2021

    Husband11, How long has she been on it? The fatigue was really bad in the beginning, but improved over time. I used to sleep about 16 hours a day in the beginning. I am on 150mg x2 per day. I still get tired, but not like that. I'm not saying a dose reduction isn't appropriate; this is just how it worked out for me.

  • husband11
    husband11 Member Posts: 1,287
    edited March 2021

    That is good to hear SeeQ. She has been on it for approx 6 months.

  • seeq
    seeq Member Posts: 1,172
    edited March 2021

    Husband11, I'm only in the 8th month of treatment, and it's been better for a few months. I don't nap as often, but I also stopped working, which was a huge relief and destressor. We're all different, so it may not be the same for your wife. I'm hoping so.

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited March 2021

    Nicole,, good luck on your new treatment. You will be in my prayers.

    Husband ,, yay on your wife’s scans.

    It’s scan time for me. Please keep me in your prayers. I go for CT on Friday and bone scan next week. Tomm i go for labs to check on my counts. Especially my ANC. Uhhhh. The anxiety we get the closer we get to scans. I will be booking a trip to Cancun in the next couple of days. I’m praying my scans are good. Hopefully Verzenio and letrezole doing it’s job. Hugs everyone.

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited March 2021

    Hopful2 - will be “in your pocket” for scans on Friday! Hope results from all your tests are good! Cancun sounds like a fantastic idea!!!! Hope you are vaccinated for Covid-19????

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited March 2021

    thank you hopeandgrad,,,,,

    I plan on going the very ending of may. Yes. I’ve had my first vaccine. I go for my second next week.

  • husband11
    husband11 Member Posts: 1,287
    edited March 2021

    Hopfull2, praying for you!

  • emac877
    emac877 Member Posts: 688
    edited April 2021

    Husband and Nicole, thank you for mentioning these side effects. I am on the 150 mg dose and have been for a year. For the most part I have tolerated it well. I have had fatigue constantly and am frustrated most days that I am not more productive. I get things done but it is a constant struggle. I was blaming it on the exemestane but maybe this is the culprit. I have also had strong stomach acid. For the moment it is treatable with daily 20mg Omiperazole but at times it just twinges every time I eat even with the Omiperazole. Nicole, I'm so sorry to see you go. Prayers for you and wishing you much greater success on the Affinitor. You are due for a break!

  • Mary_g92844
    Mary_g92844 Member Posts: 5
    edited April 2021

    well i've been on verzinio for one month. main side effects have been diarrhea, nausea, abdominal pain, and fatigue. although i have had a few good days mixed in.


    pretty bad insomnia too, but that isn't listed as a V side effect.


    onco says they're happy with my bloodwork, so stay on 150mg.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited April 2021

    I have been on Verzenio for about a month. Two major side effects: exhaustion and stomach grumbling. Does anyone elsehave the stomach gurgling? Does anything help? It hurts!

  • ChathamLady
    ChathamLady Member Posts: 49
    edited April 2021

    I’m sorry you’re having a hard time. I do not have that side effect but have read elsewhere you might need an anti-spasmodic. Ask your MO or PA. Feel betterb

  • susaninsf
    susaninsf Member Posts: 1,099
    edited April 2021

    Thanks Hope and Bliss for the kind words and sound advice. After my last post, I was taken off of Verzenio for 3 days, then went on 150 1x/day for three days, then back on 150 2x/day. Did fine the first 3 days and then had terrible diarrhea today. I even pooped in my pants as I was getting up from a nap this afternoon. I apologize if this is TMI.

    My MO really wants me on the full dosage but I don't think it will be possible. Will skip my dosage tonight and see what she says tomorrow. I have the 100 mg pills on hand if I can lower the dose.

    Thanks Husband for the good news about your wife. Raises my hopes that Verzenio will work for me too!

    Hugs, Susan

  • Bliss58
    Bliss58 Member Posts: 938
    edited April 2021

    Cross-posting with liver mets thread that I will finally have a CT scan on Wed. to determine if I'll stay here or not. Fingers crossed for good results, but I have a feeling... news won't be what I'm hoping for and want.

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited April 2021

    in your pocket on Wed Bliss! 🙏🙏

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2021

    In your pocket Bliss praying you can stay here!

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited April 2021

    Bliss- I pray that it is working! I freaked out every scan for almost 2 years and was stable each time. It was only when we all thought I would be stable for some moretime and ok to delay scans and I was feeling good.....BAM! 2 new tumors, although the 8 original are still quiet. My point only is- it's really hard to know many times. I will keep my hopes up for you

  • husband11
    husband11 Member Posts: 1,287
    edited April 2021

    Praying for you Bliss.

  • Bliss58
    Bliss58 Member Posts: 938
    edited April 2021

    Hope, yes that's me, too. Every time MO was ready to delay scans - bam! I told her she's jinxing me, so stop telling me that!

    Nicole, thanks!

    Husband, thanks!

  • Bliss58
    Bliss58 Member Posts: 938
    edited April 2021

    Appears I'm leaving this thread. Starting Gemzar a week from tomorrow. Sad that Verzenio has failed me, too, when I was tolerating it so well.

    Thanks to all who gave me insight, tips and encouragement during treatment. I wish you all great and continued success!

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited April 2021

    so sorry Bliss!! I had hoped it would work for you. Praying for your for next treatment.

  • ChathamLady
    ChathamLady Member Posts: 49
    edited April 2021

    I’m so sorry. How long were you on Vercenio? Prayers your be t line of treatment is successful

  • Bliss58
    Bliss58 Member Posts: 938
    edited April 2021

    Thanks, HopeandGratitude; me, too!

    ChathamLady, I've been on it for 3 months.

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited April 2021

    hi everyone. Just catching up on this thread. Bliss, sorry Verzenio isn’t working. Praying your new treatment does it’s job.

    I had ct scan and whole body bone scan. The bone scan they see less activity. That treatment looks like it’s working. I’m praying it is. I see my MO on Thursday. I have my Zometa infusion tomorrow. Hopefully I don’t feel sick after. Hope you ladies have a beautiful week.

  • woodlands
    woodlands Member Posts: 72
    edited April 2021

    $12,379.05 - that is the monthly cost of Verzenio 100mg. My co-pay is $50, but I arranged with Lilly to have the same person call me every month after I get my blood test results and ask me questions. By doing this, Lilly is paying my co-pay! They ask if they can contact my Oncologist, and I always say, "No." She runs the entire Oncology dept. and I don't want them pestering her.

    I hope your insurance is helping you. Good luck! I started with Ibrance, and my white blood cell count got so low after 3 months and lots of lowering the Ibrance dosage that my oncologist switched me to Verzenio. It has worked out wonderfully for me. My WBC was 4.0 last month. Here is the healthy range: White Blood Cell Count 3.4-10.8%.

    I also take Letrozole. I have stage 4 MBC, and am currently immensely lucky because my 6 bone mets (in the usual places) have been inactive for a year. I try to live a happy and stress free life.

    I don't know the phone number, but you might start with this:

    Phone:

    1-800-545-6962

    Monday–Friday

    8 a.m. to 6 p.m. ET

  • ChathamLady
    ChathamLady Member Posts: 49
    edited April 2021

    I’m so sorry you only got 3 months.
    I hope and pray your next l8ne of treatment lasts longer


  • husband11
    husband11 Member Posts: 1,287
    edited April 2021

    Does anyone know why verzenio, like for many drugs, they say never consume crushed or broken tablets? The verzenio tablet is coated with a PVA-PEG coating. It might be because broken or crushed tablets have atmospheric or moisture exposure which could degrade the ingredients, it could be to protect the patient from the drug releasing in the stomach, or to slow the release of the drug. Anyone know for sure? The reason I ask is because my wife would like to switch from 150mg 2x daily to 100mg 2x daily, but if we make the switch, there is no going back. She would like to try the switch to see if it reduces her fatigue. But if it doesn't, she would like to remain on the high dose. Cutting the tablet would be a way to achieve this.

    Another option is 2x one day, and 1x next day, to reduce dosage by 25%.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited April 2021

    Hi Husband,

    I don’t know for sure but my suspicion, given the GI effect of the drug, would be the latter. I wouldn’t want to play with cutting pills. I also think it might be challenging to ensure you are getting a consistent amount as the ratio of binding agent to drug might not be consistent throughout an individual pill.

    I am not sure why there is no going back as you put it but am a strong advocate of playing with dosage as per my MO. I’m sure Lilly would have been appalled but he was quick to make adjustments that were outside of the regular dose schedule. As an example, for quite a while I was on 200 mg once a day rather than taking two 200 mg doses. When the big D got out of hand late in the treatment he had me take the current dose (sorry... chemo brain so can’t recall the exact details but happy to follow up with an IM if you want further details) every other day. There are a lot of unknowns and so, as far as I’m concerned, as long as you don’t go below the lowest effective dose anything goes. All to say I would support plan B

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited April 2021

    Hi everyone,, so it’s confirmed that treatment is working. I had my appt with MO. Scans show a significant reduction and says treatment is working. I’m so happy. I’m on verzenio / letrezole and zolidex injections. Oh and Zometa every 3 months. Hopefully everyone is doing well. Hugs.

  • seeq
    seeq Member Posts: 1,172
    edited April 2021

    Hopfull, Hooray for shrinkage! It's so great to have that confirmation that treatment is working!

    Husband, I don't know the answer, but your pharmacist could probably tell you. Why is there no going back? Your MO doesn't support a trial period? I'm sorry, I don't remember how long your wife has been on Verzenio. My fatigue was much worse in the early days on Verzenio.

    That being said, I will be starting on a reduced dosage on my next cycle. After 8-9 months, the D was getting much worse and harder to manage.

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited April 2021

    Hopful2 - AWESOME news. Love to hear it! Praying it works for you for a very long time!!!