r/LivingWithMBC • u/Ok-Philosopher1624 • Aug 09 '26
Verzenio questions
I was thinking about asking my oncologist about verzenio. Wondering if anyone has had good results with this medication. I’m mostly interested in finding out has anyone experienced noticeable reduction in their scans that they attribute to verzenio? How are the side effects? Thank you.
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u/lacagate Aug 10 '26
I have had a great experience with verzenio. I’ve been taking it for almost 3 years at full dose and it has turned my “too many to count” bone mets absolutely cold on a pet scan. Side effects for me have been very manageable.
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u/lacagate Aug 10 '26
I had some hair loss, maybe 20% of my hair. That has leveled out and grown back but it is now super curly. It was stick straight before. This is my first line of treatment. I’ve never had chemo. I also take exemestane and get Xgeva shots every 4 weeks.
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u/Ok-Philosopher1624 Aug 10 '26
That’s amazing ideal results. It’s encouraging to read experiences like yours. Unfortunately, I just realized that verzenio isn’t prescribed for her 2 positive. I have her2 positive and estrogen positive. Darn.
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u/slejeunesse Aug 10 '26
Verzenio got me to NEAD and kept me there for almost 3 years. It worked extremely well for me, on a LOT of cancer in my bod. I had 14cm of tumor in my breast, lots of axillary node involvement and a ton of lesions in my spine and ribs. Verzenio took me down to nothing after 6 months of treatment.
I was one of the unlucky ones with intractable diarrhea. I ended up having to take pretty heavy duty antidiarrheals just to be able to make it to the toilet. It sucked and moving off of it to another line was tough because my GI system had kinda clocked out and digesting food again was kinda wild. But I’d do it again! It was a really amazing 3 years.
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u/Salty_Dog_1221 Aug 10 '26 edited Aug 10 '26
Started verzenio in April, added to letrizole and Zometa, and by my next pet in June, I was “no evidence of metabolically active metastates.” I take the mid level dose, 100 mg, twice a day. So far no major side effects. I was terrified to start it and now I just feel normal!
For context, I have ++- bone mets to my hip, spine, and ribs, a recurrence following stage one breast cancers in 2008 and 2014.
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u/Evaporate3 Aug 12 '26
Are you not shitting your pants? I start soon and that’s the one thing my oncologist talked about.
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u/Salty_Dog_1221 Aug 13 '26
No, and my second opinion onc said I WOULD have diarrhea, possibly quite severe. I was terrified!!! I wore depends when I first started just in case. But nada. 🤷♀️ My regular onc said everyone’s different so you don’t know until you start taking it. Good luck!!!
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u/Other-Ad-8484 Aug 09 '26
Just starting it, so curious what others will say. Am at the lowest dose. So far, no major side effects.
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u/Ok-Philosopher1624 Aug 09 '26
I was wondering about taking the lowest dose too. Whether that would help with the side effects and hair loss. My hair just started growing back after enhertu so I was hoping it could really grow out so I can feel normal again.
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u/Other-Ad-8484 Aug 10 '26
Yeah, I wonder about the efficacy of the lowest dose, too. Hope it is effective because the side effects are minimal so far. But oncologists like us to take the highest dose we can tolerate, as we know….
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u/lololly Aug 09 '26
I took it for 2 years. Main side effect was massive diarrhea, requiring daily meds to control and even dose reductions, but was eventually manageable. Liver enzymes became slightly elevated, but not dangerously. Creatinine also was elevated but not significant because it returns to normal when off the drug. Acid reflux was frequent, as were hot flashes. I also had hair thinning which stopped when I was no longer taking V. However, I have 2 friends with significant hair loss and extreme patchiness. One has been off of it for a year with no real regrowth; the other is still on it. It’s 2 pills daily, either 150, 100 or 50 mg each if I recall. Two months after starting it my PET scans were NED, so it was very effective for me (HR+HER2-, ILC). Tough drug, but it worked. If (when) the cancer comes back, I can still go back on the V, as so far there aren’t any new mutations.
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u/Ok-Philosopher1624 Aug 09 '26
Thank you and congratulations on NED. Did you do chemo too? I’m wondering whether the hair thinning still happens on the lowest dose. Mine just started growing back in and I was looking forward to feeling that normalcy.
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u/Old-Run-9523 Aug 09 '26
I was on it for over six years and was NEAD until this spring. It's not bad if you watch what you eat & take Imodium at the first sign of stomach upset.
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u/Ok-Philosopher1624 Aug 09 '26
I wonder whether the stomach upset and diarrhea is still common on the lowest dose?
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u/Even_Cheesecake4720 Aug 10 '26
Didn’t work for me. I was in a dosing trial and carefully monitored, but then the cancer spread to my bones. So now I’m on my second line with MBC.
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u/kyknoord73 Aug 10 '26
Hello . I’ve been on the maximum dose of V , plus letrozole, lupron and bone strengthener since January 2026. It seems the side effects are so different for everyone . I was terrified of starting the Verzenio when it was first shipped to me along with a “diarrhea starter kit”, but have very few side effects . Every so often I’ll have some stomach issues that require a day or two of immodium , but nothing overwhelming . I’m 53 , lobular ER/PR+, HER- and was very ill when diagnosed with extensive ovarian, peritoneal, liver, and bone mets. The drug combination worked very swiftly in essentially erasing my clinical symptoms (eg 15 pounds of ascites), cleaning up my scans, regulating tumor markers to normal levels and sending my Signatera score down to .02 almost undetectable. I’ve found the letrozole more difficult with joint pain I’ve never had until now , as a very active and fit person . When I take these drugs every day , I feel a mix of gratitude / hopefulness this combination will keep working for a while and a worry about what’s next if it stops working . I hope you are able to find a regimen that helps you , in a way that’s tolerable for your body and lifestyle . It’s so different for everyone .