Fill Out Your Profile to share more about you. Learn more...

Stage II and on Verzenio?

nns121317
nns121317 Member Posts: 110
edited November 2022 in Stage II Breast Cancer

I am Stage IIB, and Verzenio was approved by my insurance today. I was curious how many other "early stage" folks were taking it; my MO suggested she only has three patients on Verzenio, total. Anyone?

Comments

  • blue22
    blue22 Member Posts: 172

    I'm stage III with high risk of recurrence by pretty much any measure, was also IBC which until recently had terrible outcomes.

    I am on Verzenio, and I don't think I could be convinced to take it if I not at such a high risk.

  • kristifromsandiego
    kristifromsandiego Member Posts: 15

    I was diagnosed in 2009, had 14 years of cancer freedom and was recently re-diagnosed (Oct 2022). My insurance approved it yesterday and I have had my first pill this morning. So far so good. Eating small meals and drinking lots of water. I have been on anastrozole for about 5 days. Minimal reaction with that except soft stools. We can go through this new drug together. Keep your head up! It can be overwhelming.

  • nns121317
    nns121317 Member Posts: 110

    My MO had me settle on an AI before starting Verzenio, and I'm glad she did because it turned out I couldn't tolerate anastrazole. Letrozole has been much better, two months in and few side effects that are relatively easily managed. My cancer isn't in-your-face aggressive, but was described by the MO as "persistent" - we've had to play catch up as supposed DCIS turned into 2.5cm of grade 2 IDC, then a surprise positive node with a high-ish Oncotype and a 50% Ki-67. I'm only 43, so definitely doing everything possible to keep the cancer away long-term.

    I've had IBS-C for years, so I'm mostly curious how Verzenio will change up my bowel care.

    Kristi, I'm sorry you were re-diagnosed. Hopefully the Verzenio takes it easy on us both. Blue, how long have you been taking Verzenio?

  • tk75
    tk75 Member Posts: 1

    Hi All. Sorry to hear about re-diagnosis Kristi. I'm Stage II and just started Verzenio 4 days ago. So far the side effects are easier than I was expecting. Possibly because I've been on Anastrozole for 5 months already so I've had time to get used to it. Does anyone know if that's a thing? Did anyone find the Verzenio side effects got worse before they got better? I'm trying to figure out how to plan the week ahead. - TK

  • nns121317
    nns121317 Member Posts: 110

    Due to some online pharmacy challenges, I only started taking Verzenio last Friday. So far, I've experienced a loss of appetite and a LOT of peeing (lost ~5 pounds of water weight the first day) but no other side effects. I'm a little nervous because I haven't had a bowel movement since last week (typical for me because of IBS-C), but if I start the typical Verzenio diarrhea soon I might have a real explosive experience, hopefully not at work...

    TK, I hope Verzenio is easy on you! Like you, I'm really wondering how this week will go. You're a day ahead of me, so keep us posted!

  • snailpwr
    snailpwr Member Posts: 9

    Hi

    Would like to see if anyone has updates with Verzenio.

    Thank you

  • margecandoit
    margecandoit Member Posts: 131

    I am on verzenio. I have been on it for 5 month with a 2 week break for surgery. I had some diarrhea at the start but now it’s not really anything and just have fatigue.

  • maude7646
    maude7646 Member Posts: 12

    I’m also stage 2 and on Verzenio for high recurrence risk. It’s been about 5 months and honestly has not been bad. First 2 weeks were the worst but after that, just some fatigue and occasional diarrhea (maybe once a month?)that is easily managed with the meds.

  • bigote23
    bigote23 Member Posts: 2

    I started taking 100 mg Verzenio twice a day on 08/16/23. I'm on day 5 and have not yet experienced any diarrhea. 🙏🤞I did have one episode of loose stool and some fatigue after two days (4 doses) but none since. I am hoping this trend remains. I am able to walk for one hour every morning and make sure to include plenty of fiber in my diet (vegetables, fruit, overnight oats every morning). I will update the group after another week and see if the diarrhea appears. I am scheduled for blood work on 08/28 to assess effect on my white blood cells, etc…

  • bam320
    bam320 Member Posts: 84

    Hi there,

    I was diagnosed in 12/18 with IDC at age 53. I was told I was stage 1b. Tumor grade was a 1, I had three small tumors but had 8 positive nodes. I did A/C, Taxol, radiation, and I am on Anastrozole. I did a few years of Zoladex.

    I will be in my 6th year out from diagnosis in December. I feel great and just have lymphedema. My original Med Onc left so I am with a new Med Onc who I had seen twice. Leading up to my appointment in May which would have been my third time seeing her I had started to see commercials for Verzenio so I messaged her and said I would like to talk to her about Verzenio at my appointment. We talked about it and she thought it would be a benefit to me but told me to think about and when she saw me again in August after my mammo, I could let her know what I decided. My insurance did also approve it. I saw her in August but was getting ready to go on a trip so we scheduled for today to get started.

    Sorry this is so long but I am still totally on the fence about this. I should get the medication this week to start but I soooo do not want to do this. So many questions such as if this would be beneficial to me why did she not bring it up to me at earlier appointments?( I know the use of Verzenio in early bc is fairly new ). We have no idea how long the benefits of this will last or what this medication could do to someone long term since I assume no one has lived years and years after having being on it for a period of time. What if years from now I were to get metastatic. Would this medication be off the table for me? —got a vague answer to that question.

    I am currently physically active, I volunteer, take art classes, etc. Life is good. Do I really want to spend the next two years with possibly a diminished quality of life for a benefit that is somewhat unknown— I read someone said their Onc said it was only a benefit to those who were just recently out of tx/diagnosis. And that would be a totally different senario, of course I would do it then. But now, I don't want to go back to feeling like a sick person both due to side effects and monthly blood draws ( every two weeks the first two months) , adjusting meds, etc. The doctor was so late today. A blood draw and appointment took four hours. These all sound like petty reasons compared to possible longer life with my children who are 18 and 21.

    Again, sorry this is so long. Just kind of venting and hoping to sort it out by getting this out. Does anyone know anyone this far out from diagnosis who has started Verzenio for early BC and not mets? My doctor said they do not have anyone and this is a big system that I am in.

    Thank you if you have read this far!

    Betsy

  • snailpwr
    snailpwr Member Posts: 9

    Hi Bam320


    You have great insight into what could happen next.


    I am working through my last 9 chemo treatments then radiation. I have time to consider this drug option. I have ILC.


    What I discovered is all the common side effects are not what I want to experience. I would feel like I am in chemo for 2 years. Even my MO says they don't know long term. There are only 4 years worth of data.


    I am opting of ovarian suppression since I am 46. And an AI. I'm skipping tamoxifen.


    I wish you the best as you face these options. It's so surreal to think about mortality in this way.


    For me I realize it's all by the grace of God we are here, and I am grateful for each moment.

    - Snailpwr

  • bam320
    bam320 Member Posts: 84

    Snailpwr,

    Thank you for your kind response. I have decided not to do it and I am completely at peace with that decision. These are such terrible decisions to be made but this one did not feel right.

    Best of luck to you with the last of your chemo!❤️

  • moderators
    moderators Posts: 7,886

    Hi all, thought you'd be interested in this new research news story: