Stage III and Verzenio
I may need to venture into the mets forum for SE coping strategies, but I’m wondering if there’s anyone else who’s been put on Verzenio (vs Ibrance or Kisquali) to prevent recurrence? My MSK oncs and Yale onc (I switched to Yale this past summer) all agreed that I should be put on a CDK 4/6 inhibitor. We waited until this fall (regional recurrence that made me stage III - DXed July 2019), due to finishing treatments and me pushing it off further due to Covid, to start. And though I was originally going to be put on Ibrance I was put on Verzenio due to its positive data coming out of the trial.
Oof! Verzenio has been rough. The Covid silver-lining is that being at home all the time is convenient for my now daily attacks of diarrhea, but I’ve got to get it under control because I want to have a better quality of life (especially in the Covid After Times).
Immodium is pretty effective at stopping the diarrhea after one or two episodes, but it hasn’t been effective used as a preventative. So, I’ve turned to probiotics a week ago. I’m taking a daily capsule of Align and trying to eat some yogurt every day. So far, I’m seeing no improvement with the probiotics.
I’m trying to up my water intake and have supplemented it with the Liquid IV powder (basically, healthier Gatorade - electrolytes with more vitamins and less sugar). That’s helping me with dehydration and keeping labs looking pretty good.
i’m taking 150mg - the recommended dose. If I can’t find a better way to manage the GI side effects, I think we’ll need to reduce my dose.
Ugh! This sucks 😕
I'm not taking Verenzio but I'm interested in starting it. Sorry to hear about your GI issues! I hope you are able to figure out some way to deal with it. Will you be on Verenzio for 3 years? Has it been approved for early stage cancer already?
Divergent it has not been approved for early stage cancer people0
Verzenio has only been approved for metastatic breast cancer, stage IV. It is possible that an mo can use it off label for lower stages but I don't know if clinical trials have been conducted for patients other than stage IV
* Update- There is a clinical trial in progress and it seems promising for lower stages.
Yes, it’s because of the clinical trials that I and others (especially those of us who’ve had a regional recurrence) are getting prescribed Verzenio, Ibrance and Kisquali. My current onc and my former onc at MSK were ready to put me on it months ago, before the Verzenio trial for early stagers (although, I guess I’m technically considered advance non-metastatic stage) released any official data. But I decided to hold off until a couple of months ago because of Covid.
And update RE GI side effects:I met with my onc this morning. My labs from a few days ago continue to look good, but my GI issues are worse. So, she wants me at start taking 2 Imodium pills 12 hours apart. We’re hoping this will get in front of the GI issues. If in a week that doesn’t help things, she’s we’re going to the next dose down: 100mg. So, we’ll see. Wish me luck! 🙂0
There is the MonarchE phase 3 clinical trial being conducted at the moment on advanced Stage 3's. You can look it up. There has already been promising results realeased. I took verzenio fortwo years and finished up over a year ago.0
As a way to manage my anxiety this time around with the new diagnosis, I’m actually not delving deeply into the research and am instead relying on my MO to update me on all new data It’s my buffer strategy. Last time around I got lost down the rabbit holes of research and my anxiety was out of control. So, I purposefully haven’t looked up the trial results. My vocabulary has definitely suffered from it because I couldn’t recall which trial (Monarche or Pallas) involved my specific situation. This strategy has been enormously helpful cooing-wise but damn did it take years if therapy and a handful of switching to MO to find one I trusted implicitly to get to this place. I am definitely a control freak who usually craves every bit of information.
Anyway, TLDR, I won’t be looking up the trial data myself, but my MO does say it’s been overall promising.
I love how the pharmaceutical industry continues to use different brand names across countries for the same medication. It always trips me up. Assuming you were on abemaciclib (I had to look that up because I’m never going to remember it), how did you tolerate it. Karen? Any coping tips? And how many mgs was your dise0
Yes I was on abemaciclib. I was extremely lucky and had no side effects at all. From memory I think I was on 150mg twice a day with no food allowed an hour before or an hour after the dose. All the very best to you.0
my MO wants me to add verzenio. I’m stage 3A. Well. My cancer is stage 3A.
It went through and was ok’d by my prescription coverage, but had a monthly $775 copay. That’s a lot. Especially for a med I’ll be on for years.
I got the savings card from verzenio, which should cover the copay.... but they haven’t updated their site for anything but stage IV. (I called because I wasn’t comfortable checking that I had it...)
the MO mentioned the Monarche study. I’m (idealistically) hopeful that if the study has made this available as a useful therapy for stage 3 they’d update their literature.
I’ve glanced at the studies, but they make my eyes gloss over...
Has anyone had trouble with the cost of this med? Or experience with their savings card0
I also signed up for the cost savings card. I had to call them too because I am stage 3, not metastatic. So far so good with the card. I haven't started taking it yet because of some problems with healing after my reconstruction. Hopefully I can start in a few weeks.0
this diarrhea side effect is terrible. 4 weeks.0
OMG. Verzenio is an official sponsor of the olympics! Can't imagine that any athlete would appreciate verzenio induced dia0
I was in the MonarchE trial. FInished my two years of Verzenio in December, 2020.
The diarrhea was a struggle the entire two years, although it was worse at first and then got a little better. I started paying attention to foods - trying to identify any triggers. Lactose was a big trigger for my diarrhea - I switched to lactose free dairy and alternative milks like almond and oat. That helped significantly. It was easier to manage during Covid because I was working from home, but before that, I had frequent close calls.
I also suffered leg and foot cramps - primarily in the evening and nighttime. Electrolytes helped with that. I would encourage daily electrolytes.
After I finished the two years, my research MO remarked that two years is a long time to be on Verzenio - precisely because of the GI issues. The day after I stopped the drug, I noticed instant improvement. I have no regrets at all about suffering through the SEs - the trial results are very encouraging. Interestingly enough, I just learned from my research MO that the results from Ibrance are not as promising.
Best of luck to you!
thanks for sharing Linda. I’m so glad people like you step up for these trials.
it’s weird, I think, that the diarrhea seems to be directly correlated to the morning dose but not the night. (Knock on wood).
Now that you mention it I have had increased leg cramps at night … hmm hadn’t made that connection before.
my MO said if the SE haven’t gone away yet, it’s unlikely they will go away while I’m taking the med.0
I am going to be starting Verzenio as well. I am officially stage 2b put had heavy lymph node involvement, so my Oncologist wants to give it a go.0
I actually had 4 nodes involved, two had specs in them, so I am IIIA, just too lazy to change my bio. I've decided to follow my mo's advice and go another 3 years on AI after taking it for 7. Now I see this Verzenio ya'll are talking about. I wonder if it is something I should ask her about. My tumor was not very large and the grade was low, but two of my nodes were marcrometized and trying to grow outside the node. Of course they were there for who knows how long.0
I am now on Day 7. Lots of stomach cramping, but no diarrhea yet. Hoping that things don't go South for me.0
Like Linda, I was in the drug arm of the MonarchE trial. Finished the active phase at the end of January 2021. The diarrhea was REALLY bad for about the first 5 months and then got slightly better. I also learned which foods to avoid that would make it worse - for me dairy was not horrible but fried foods were. In the end, it was manageable but I was glad to be done. If it was my prescribed treatment, I’m not sure how long I would be willing to stay on it. At the same time, the trial results were really promising and if this was the treatment needed to keep the cancer away, it was manageable. Sorry, really conflicting comments there!
DO NOT EAT GRAPEFRUIT!! Seriously, I had two sips of a drink made with grapefruit juice and it was really ugly!
Good luck to those of you taking it!
I am feeling well on Verzenio after a rough first week. I saw the Oncologist yesterday for bloodwork and had fairly low WBCs (2.99 with a standard range of 3.81-8.94) at the two week point. Just curious how others did with this side effect. My MO said that if the Absolute Neuts (1.51 with a standard range of 2.23-6.11) stay as they are, I am ok, but if they drop below 1.00, I'm looking at a dose reduction. I am curious how others have done with this and if WBC levels continued to drop after the two week point..0
It’s been a while, so I thought I’d give an update on my Verzenio journey. I have no idea why it took so long for me to do this, but I was able to control the diarrhea if I preventively took Immodium with each of my 150mg pills. I started work two Immodium pills per Verzenio dose. That definitely controlled the diarrhea but caused pretty severe constipation, so I eased off to one Immodium for the morning dose and two for the night dose. My constipation continued but was somewhat manageable. However, about a month and a half ago I started getting bad stomach cramps each time I ate. So, I took myself off the drug for a few weeks to just get my system a break. It was glorious! I hadn’t realized how much my appetite was suppressed. But I did realize the one great side effect is that it cleared up my oily, acne-prone skin. My Summer acne came back with a vengeance.
My oncologist was definitely on-board with my Verzenio break and we both agreed it was time to dose reduce to 100mg. I’m on my third week on the dose reduction. For the first week I tried going with out the preventive Immodium, but was hit with diarrhea about a week in, so I’ve started taking one Immodium pill per Verzenio. It’s been working pretty well, but there is some constipation. I’m going to try and up my fluid intake and take a fiber supplement to try and balance things out.
So, here’s my newest issue that I’m really bummed about, but I can’t yet attribute it solely to Verzenio: major hair thinning. The front of my hairline has thinned so badly that I’ve had to buy a topper. I’ve probably thinned a bit all over since starting the AI and Lupron two years ago, but since the beginning of June I’ve had very noticeable hair loss. I may get a scalp biopsy to see what’s causing the thinning: Verzenio or androgenic female-pattern hair loss. Ugh! I really didn’t want to revisit wigs and whatnot. ☹️0
scaredMe - they’re watching all my numbers and my WBC was lower on Verzenio than during active chemo! But they’re watching *all* the numbers, and my last blood draw things were improving. I think I was more concerned than the MO. I have my 3 month appointment soon.
I take one pepto pill every morning with all my other pills and take a fiber gummy 3x/ day, and have narrowed the diarrhea to a few hour window in the morning for the most part. Also adding in smoothies made with probiotic drink.
It seems to be trial and error.
Tried cutting dairy and it made no difference.
Tried eating more fiber. No difference.
1 dose of immodium will stop my diarrhea for 2 days! It also leaves my super uncomfortable and constipated. But half a dose does nothing
the fatigue is the other SE that really effects me. I seem to be able to build a routine, and less diarrhea means more energy.0
Very interesting that your numbers were better during active chemo because mine were as well! I guess that I am fortunate thus far because my only side effect past the first week has been some mild stomach issues at times. So bummed that the bloodwork may do me in!0
I am going to ask my MO about Verzenio next Tuesday. I had genetics blood work done and need to find out my CDK 4/6 and Ki67 numbers. I am Stage 3A, grade 3 with 2 + nodes. But assume after chemo, mastectomy and radiation I should be NED. My MO said the FDA may authorize this drug for non metastatic patients by the end of the year....Any questions I should ask? Thank you!
I would recommend inquiring about side effects. I don't feel that I asked enough questions before agreeing to start and was really surprised when the nurse navigator starting telling me all about what might happen. I guess like 90% of people experience diarrhea and 40% experience issues with their blood counts, you can get mouth sores, blood clots, have hair loss.. the list goes on and on . I have to go for blood testing every 2 weeks for the first few months. It has kind of put me back into being a patient, which isn't great psychologically.
That said, I am past the first month and doing ok other than potential issues with my blood counts, occasional diarrhea and some stomach cramping, so I am committing myself to persevere.
All the best to you. This drug isn't for the faint of heart (and this is coming from someone who sailed through A-C chemo)0
Thank you for the info. I have Crohn's disease ( in remission for 28yrs), so I'm familiar with stomach issues. My Ki67 "rate" is 25%, my tumor was greater than 5 cm, one lymph node had 1cm cancer so I qualify for the med. I'm willing to try anything to keep the cancer from coming back. I too had very few side effects with AC +T. Hope you are doing well.
Look like I am getting my first dose reduction. My absolute NEUT count was .92 (1.92-7.60 K/uL being normal), I was told to stop taking the pills until I got my new pills (100 versus 150) in the mail.0
scaredme, can I ask how you got the meds? Looks like you are stage 3, not 4. I'm a little mad that my MO didn't consider this drug for me earlier. I had to ask her for it. Makes me wonder if I hadn't brought it up, would she have eventually! Does your insurance cover it? Thanks.
My oncologist mentioned that it had dome well in the Monarch-E trials and I asked to be put on it. It is not yet standard of care for our stage. My insurance (Blue Cross) has covered it 100% - It just has to go through the Dana Farber pharmacy (I go to Dana Farber, obviously).0
insurance has approved the Verzenio! I waiting to hear what my copay is, but I think I should be able to start it in the next 2-4 weeks or so. The dose is 200mg tablet twice a day. That seems like a lot. But nice to know we can lower the dose if the side effects are bad.
I am surprised that they put you on such a high dose. They started me on 150 twice a day and have moved me down to 100 because of low blood counts. It'll be interesting to see how you do with it (Hopefully better then me!). I am currently on a break from mine to build my WBCs back up, plus I have a root canal scheduled next week so I will go back on the lower dose a week from tomorrow.0
my MO said their system defaults to 200mg twice a day, and will be switching it to 150mg twice a day. So that's what I'll start on. I have a quick trip with my husband Nov 5-10, so I won't start it til after I get back. Good luck with the root canal.