Verzenio side effects?

is anyone on Verzenio and experiencing bad side effects? I’m about to start and really nervous.

Comments

  • softsailor
    softsailor Member Posts: 4
    edited March 2019

    i have been on verzenio and the shots now once a month since sept of 2018. i have the typical side effects that they list on the web site as well as what comes on the package. i do have some side effects not listed. i have an over abundance of saliva which causes me to feel like i am drowning. or some time i inhale and the saliva goes down my throat causing me to cough real bad in the middle of the night and during the day. i do not know how to stop this side effect. also i have a big build up of flem in my throat which i am combating it with mucinex, it helps a little. i have the diarrhea i am still trying to figure out what foods make it worse and what foods cause constipation and try to balance the 2, i can still eat but not like i use to. there are days i only able to eat some lunch and a little dinner and other days i m unable to eat. i will become concerned when i have lost a total of 60 lb's. the stuff for anti diarrhea works but if i take as prescribed i than have the constipation, i would much rather have the diarrhea then not. i am still in the early stages of taking my meds. my question to those out there to those who have been taking the verzenio and shots for more than 1 year, does the side effects go away. does anyone else have weird or not mentioned side effects and how are they dealing with. I also take baking soda for my stomach as well as for my kidneys. i take milk thistle for my liver.

    THANKYOU

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    Thank you for sharing, Softsailor! Firsthand experiences are so important and helpful. We're sorry that you're experiencing some of the side effects you mentioned, we can imagine it can be difficult to manage at times. Have you discussed them with your doctor, or talked to them about how long you can expect them to continue?

    The Mods

  • vlnrph
    vlnrph Member Posts: 1,632
    edited March 2019

    There is an extensive abemaciclib/Verzenio discussion on the stage IV board. I assume both our original poster and softsailor have metastatic disease so should feel free to read and ask questions there. I take a reduced amount of 100mg twice a day and just had a PET scan which showed less tumor activity in several areas of my skeleton. So, the combination with Faslodex injections and Zometa infusion monthly seems to be working.

    I use calcium polycarbophil tablets to control the diarrhea, two daily at noon with a big glass of water. The old brand name is FiberCon and you can usually find it in the laxative section! Even a low dose of loperamide (half of an Imodium) was too much - made me feel bloated and very uncomfortable. I could hardly eat or drink.

    Interesting that ss has extra phlegm. I feel like my nose is more runny. Guaifenesin is a good choice for her to thin those secretions, along with pushing fluids. As a retired pharmacist, I am a little concerned about how much baking soda she takes. You can quickly get into an electrolyte imbalance. An antacid like Tums would be safer...

  • softsailor
    softsailor Member Posts: 4
    edited March 2019

    hi i have mbc i am taking 150 mg verzenio 2x a day plus 2 shots now once a month since sept 2018. it is working.

    i use a 1/2 teaspoon of baking soda once or twice a day if needed for my stomach. mostly i use the baking soda for my kidneys but it works real good for my stomach.

    most of the antacid only work for me as a helper to baking soda.

    just would like to know if someone else has the excessive amount of saliva. it causes me problems with breathing and swallowing while eating, sleeping, it is so weird. thought it was because of the verzenio causing nausea, but i take a anti-sick pill for that. it does not stop it or slow it down.

    are there other people taking verzenio who have weird side effects. does a persons body ever get use to the side effects to a point were they go away.

  • funshopper2
    funshopper2 Member Posts: 5
    edited March 2019



    I was
    diagnosis with MBC on January 14, 2019. 
    The needle biopsy of the lymph nodes in my neck supported the
    diagnosis.  I was first diagnosed with BC
    in 1993 and after a clinical trial study of high doses of Adriamycin and Cytoxan
    I assumed
    I kicked the BC.  Then in 2005, I had my
    first recurrence in my chest wall.  Once
    again chemo was administered.  Taxotere
    and Carboplatin were the drugs of choice with radiation.  Then in June 2005 after these treatments I started
    Arimidex (later switching
    toFemara).  All was well until I noticed a swelling of sternocleidomastoid
    muscle in my neck.  So, here I am with
    MBC in 2019 and taking Verzenio 150 mg twice a day with an infusion of Faslodex
    once of month. 

    Here are the side effects I am experiencing.

    · 
    Diarrhea—Imodium-causes
    constipation ( I’d rather have diarrhea)

    · 
    Nausea—Zofran and
    ginger tea and ginger candy

    • Mouth sores including fever
      blisters—using Zovirax
    • Loss of appetite—eating
      small meals
    • Rash—went away without medication
    • Low white cell count
      (tiredness)

    The pharmacist assured
    me that these side effects will go away in three months.  I see my oncologist next week and I really
    want clarification.  I called Lilly to
    see if they had a FACT sheet detailing Verzenio side effects and they did not have
    any FACT sheet for their drug.  Only
    diarrhea is mentioned as the major side effect. 

    Wish all
    well in this journey.  I fully expect to
    continue a fun filled life. 


  • la_157
    la_157 Member Posts: 6
    edited March 2019

    I’m on day 3 of verzenio now and the diarrhea and neausea is starting but that’s the least of my worries. I am experiencing severe body aches. It feels like every bone in my body is arthritic. I don’t know if this is a side effect of verzenio or a sign of the bone legions and tumors worsening. Did anyone have worsening bone pain when initially starting?

  • softsailor
    softsailor Member Posts: 4
    edited April 2019

    la_157 HI

    from softsailor to the journey we must take. all is good, the ache's kind of go away after a while or maybe i just got use to them. i take tylenol a few times a day as needed for pain and a pain pill at night with melatonin to help sleep. i also drink about 1 liter of water during the night. that is for the dry mouth i get at night, during the day now i have excessive saliva which is a weird side effect, it use to be both day and night.

    i thought the same as you when i had the bad pains in my body at first. after 3 or 4 months the dr did a pet scan on me and it showed a improvement on the size of my tumours in my pelvic. HAPPY HAPPY JOY JOY.

    i also go to the YMCA for water exercises seems to help for the aches and the buildup of my muscles and strength and it gets me out of the house and to stop feeling sorry for myself.

    check out the site or forum about the side effects. if you have weird side affects let us know.

    hope your journey get better.

    gods blessing from softsailor


  • beeline
    beeline Member Posts: 308
    edited April 2019

    There is a Verzenio board for stage IV here with some great information if that applies:

    https://community.breastcancer.org/forum/8/topics/861227?page=31#idx_920


Categories