Verzenio
Are any of you on Verzenio and have low white cells. If they keep going down after taking a week off, what happens. Do they stop the drug? Any experience you have with this drug would be appreciated! I also get chills all the time. Help me with your experience! Thank you Kathy
Hi Klamato -
I take Ibrance, which is very similar to Verzenio, e.g. they're both CDK 4/6 Inhibitors, not that I really have any idea what that means. They're considered almost interchangeable, I think...Ibrance was the first to market, from Pfizer, but then other pharmaceutical companies came out with similar drugs, i.e. Verzenio (Novartis?) and Kisquali. In any event, I think it's safe to assume that the effect on WBCs is similar...
What they typically do is check labs on your week off, ideally the last day of break, to ensure that your counts are high enough to resume. Low WBCs and ANC's (absolute neutrophils...I actually think this is a specific type of WBC?) are very common. From what I gather, ANC's at or above 1000 generally are considered okay. My ANC's are generally lower than this and I've not had any issues - and certainly not chills - so I'm wondering if there's something else going on, e.g. do you have a fever?
Re: WBCs....While I've seen ANCs come up on this board frequently re: issues with Ibrance, I haven't seen alot about WBCs; not sure why that is. I think my WBC's fluctuate between 1.4 and 1.8? Unlike the ANC's, it's never come up in a doctor visit, either .
If you haven't already, I would definitely check your temperature since clearly low WBCs/ANCs increase risk of infection. I'd also check w/ your doc since, again, I've not seen that on this board much (or ever?), so it seems like an unusual thing.
Maybe try using the search bar, upper right, to search on "chills" or "Verzenio"? I do hope someone with more relevant experience responds...
Take care,
Lynn
Hi,
I have been on Verzenio since July, 150 mg twice per day. My WBC seem to go down a little bit more every month. I asked at my last treatment what they would do if they get too low. The nurse really did not know, but said they would be high enough for now (like to keep them 1.0 or above and I am still in the 3 range). I have the loose (sometimes very loose) stools, along with wild changes in my temp (not as officially taken, just what I feel). I put up with the side effects, just hoping it is also doing a number on the cancer!
Anne
I also vacillate from diarrhea and constipation! The big difference for me between Ibrance and Verzenio is the gastro symptoms I experience with Verzenio. Also, I am a bit more tired, taking a nap most days, which is fine! Also weight gain and fluid build up because I’m taking it along with Tamoxifen because I failed the other combinations! It’s a challenge to say the least! Overall, I’m doing well. Ibrance worked for 19 month keeping me stable, but then there was some activity, so they changed me to Verzenio! I think this hot and cold thing might me something else and I am now being tested for flu and Covid19. We will see! Keeping my fingers crossed and praying I will be okay! Thanks for your reply. Kathy
I have exactly what you have my body temperature is off with the Verzenio I thought it was because of the Faslodex injections which messes with your hormones. If you’re taking Faslodex I think the body temperature is from that. I love Verzenio so far I’m getting terrific results. I have very leaky eyes they leak down my face constantly all day all night I was just told above that it probably is from the Zometa ??
Thx for your great reply! I don’t have fevers, but both my internist and oncologist want me tested for flu and Covid tomorrow. So we will see what’s going on! I’ve increased my water intake and am eating tons of fruit for Vit C. This cancer thing complicates this virus thing! God help us all! Hang in there and thank you for your insight! Kathy
Thank you Lynn for your informative reply!
Hi Klamato,
I'm currently taking 100mg of Verzenio 2x daily with letrozole. My counts fluctuate between 600-800, which is low but pretty normal for this drug from what my doc told me. (I couldn't stay on Ibrance because my counts would get as low as 230 at times.) I started on 150 mg Verzenio, but my doc lowered the dose because of the other side effects I was experiencing: fatigue, loose stools, weight loss. I'm still having GI issues (now I'm constipated!), but as I said my counts have been pretty stable in the 600-800 range. I have experienced chills at times, too, mostly at night. I would definitely mention that to your doc if you haven't already. A lower dosage may help.
I hope this is helpful in some way. Stay well!
Hi Kathy,
I started out on Ibrance but after several reductions of dosage, my ANC's kept dropping.
So I was switched to Vernezio with the promise that the counts would not be so severely affected. Started at 150 - but could not stand the fatigue, diarrhea, and started seeing double! Reduced to 100 -but counts were low -- so finally to 50. This is the magic number.
No side effects to report! I also have monthly shots of Faslodex which are not a problem so far!
Judy
Same exact story. Ibrance was only on for three months. I hated it and my week off I felt like I was dying. It was scary. Then an infection turned into something so much worse and had to have surgery which was a horror with a four month recovery. was off Ibrance and just getting injections for like five months.
Then was put on Verzenio, 150 mgs. (OMG...I stopped after two weeks), when I went back I said no can do, she then put me on 100 mgs. (felt the exact same as the 150 mgs.) and again I stopped after two weeks and then when I went back to her again, she said well this is the final dose 50 mgs. 2 x a day. What a difference. I do not feel the very hard to deal with fatigue from the Ibrance, there is no week off and I can easily manage the sometimes diarrhea, sometimes constipation but I no longer have to take naps and do not feel the fatigue. I have been on it for almost 11 months now.
I am so much happier on the Verzenio but ONLY the lowest dose.
I preferred the Ibrance, with very dry brittle hair being my one complaint and additionally itchy skin! Verzenio definitely has affected me differently, especially with gastro problems. My white count was 1.4 and neutrophils at .8 as of today. My doc took me off for 2 weeks and perhaps she will lower the dosage from 100 mg to 50 mg. We will see. Thanks for your informative reply! Kathy
I have been on Verzenio Faslodex and xgeva for about a year I get hot flashes and chills usually always cold bad pains in stomach and nausea usually followed by constipated diarrhea. It comes and goes getting used to how to handle it not quite as bad as sounds once you get used to handling it. Also has been keeping me stable so I’m sticking with it. Hope I was some help and good luck to you
Thanks for your info and encouragement! I feel better about it! I am off Verzenio for2 weeks because of my low white cells! I am hanging in there! Between this Covid19 and cancer, it’s really scary for all of us! Stay well, my friend❤️👍
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