Anyone on Verzenio?

[Nocillo]

Hello all, I’m switching from Ibrance to Verzenio in a few weeks. Does anyone have comments, good or bad, regarding this drug.? And information is greatly appreciated!

[DaughterRM]

Hello, my mom switched from Faslodex to Versenio 3 months ago as she got liver mets (bone only mets before). Regarding side effects, the most difficult one is diarrhoea but it is manageable with Imodium. She also takes probiotics which seem to help. We just got results of first PET/CT scan after switching to Versenio and tumours shrunk and metabolically less active than 3 months ago. Good luck with new treatment!

[Nocillo in reply to DaughterRM]

Thank you for the info!

[Beryl71 in reply to DaughterRM]

So is verzenio an alternative to letrozole or Faslodex? I thought from the question above it was alternative to ibrance. I'm interested as I've just moved to Faslodex from letrozole. I want some alternatives up my sleeve in case this doesn't work! Although not all drugs are available in Scotland on NHS.

[DaughterRM in reply to Beryl71]

Versenio is not alternative to hormone therapy but as Faslodex failed they switched her to Versenio+Femara (letrozole). She didn't have any targeted therapy before.

[TammyCross in reply to Beryl71]

Letrozole and Faslodex inhibit estrogen in different ways. Verzenio and Ibrance are "targeted therapies." The former deprive the cancer of "food" to grow; the latter specifically attack cancer cells.

[Gerbo]

I did not respond to Ibrance too well. I struggled with fatigue and depression. My neutrophils levels were often super low in the danger zone. One time my body couldn't fight off infection and the inside of my mouth and throat was cover with sores. The canker sores happened often, they were big and took a long time to heal. I had difficulty eating from the pain. After almost a year on Ibrance starting 125mg, 100mg and at 75mg my body still couldn't tolerate. I was living like a zombie. I gained so much weight because I didn't have the strength to get up. I have a 7 year old. Oncologist finally switched me to Verzenio and I got my energy and life back. I now have energy to exercise, run with my daughter (sometimes) and feel like a normal human being. I do experience diarrhea once a week and take Immodian AD. I have to make sure I replenish minerals and electrolytes though or I start feeling weak. In my opinion, I would rather deal with the diarrhea than the hell I went through on Ibrance. But hey, I noticed we all deal with treatment differently. I have been stable on both Ibrance and Verzenio so far. That's my experience. Wishing you the highest good outcome. Love.

[ba5083 in reply to Gerbo]

Your experiences sounds similar to mine although I have not been on Verzenio but 6 weeks. What does of Verzenio are you currently taking?

[SMPG]

I also got switched from Ibrance to Verzenio some 9 months ago. I had no side effects on Ibrance and I dreaded Verzenio because I heard that it may cause severe diarrhea in most of the people. Well, for months and months I did not get that but then I did. Now I have to take Verzenio with an anti-diarrheal because otherwise it is bad. I even pooped on myself and in my bed because I had no time to get to the toilet. Now I am good. I am having Faslodex injections and Xgeva injections too

[Nocillo in reply to SMPG]

Thanks. That’s what I’m dreading too. I’ve been great on Ibrance. I shouldn’t dread what might not happen, but I do. Why don’t they just add an anti-diarrheal to the Verzenio?🤷‍♀️

[SMPG in reply to Nocillo]

That's what I was wondering too

[Nocillo in reply to SMPG]

🤷‍♀️

[DaughterRM in reply to Nocillo]

Because not everyone needs it. Some people even have constipation instead.

[B17865]

Hi! I have completed one month/cycle of Ibrance 125mg. Much to my surprise, the only side effect I have had so far is that my white blood cells, platelets, neutrophils, lymphocytes, and basophils are all the worst they’ve ever been since I got cancer and all throughout chemo last year. Oncologist is checking my labs every Friday since I started on Ibrance. She is dose reducing to 100mg for the next round. Hope this helps!

[Nocillo in reply to B17865]

I reduced to 100 and only real side effect was fatigue. Good luck!

[Fiercefighter13]

I was on Ibrance 100 mg/Letrozole for 2 1/2 years. It kept the cancer at bay at best 1 year out of that time frame. I was bone only and it spread to my stomach and colon the last 1 1/2 years. I was switched to Verzenio/Fulvestrant. I had no side effects whatsoever on Verzenio (strongest dose), but it did nothing to stop the cancer. I ultimately was switched to Xeloda.

[Nocillo in reply to Fiercefighter13]

Thank you!

[Figletf]

I only had diarrhea for a very short time on Verzenio.My scans remained stable but my neutrophil count and white blood cell were bad .We had to cut the dose down to 50mg and then my scan showed progression into my stomach lining..Before I had bone and liver mets. Now we are going to try either Afinitor or Enhertu.I pray the Verzenio works well for you💜

[TammyCross]

They always start us on the highest dose and then go down if one has bad side effects. They should start on the lowest and go up! I started on the highest dose, went down to 75 mg twice a day, and am now on 50 mg twice a day, to keep diarrhea at bay. I never had it as badly as some, but it was certainly a nuisance. My onc is now thinking of 50 mg once a day, depending on my next scan. My tumor markers are good, so she is thinking I might be okay on an even lower dose.

[SMPG in reply to TammyCross]

I always told my doc to start me at the lowest dose and she listened. This is the better way.

[TammyCross in reply to SMPG]

Lucky you! Of course, this is what BestBird worked on to good effect.

[atlanta0706]

Verzenio 150 2x day for 1 1/2 years now. The diarrhea is real but manageable - I wait until the start of an ‘episode’ to take pepto or Imodium. I get const if I take it all the time and I only need it about once a week.

Fatigue, low WBC/neutrophils, watch liver and kidney functions. My biggest annoyance is watering eyes - constant tearing….I’ve tried everything and can’t fix that one.

Still glad to be on it though.