Verzenio issues

[Wildcat1]

I was just wondering who all is on or had been on Verzenio? I have only been on it since July and this drug is kicking my butt. I am very fatigued, no diarrhea but very constipated, nauseated loosing weight, itching all the time, and at time I’m out of breath. I just had scans completed so I get my results on Tuesday. Was just wondering if anyone had a hard time with this drug or am I experiencing progression. TIA

[Hidden]

Hi Wildcat1,

Wow, I'm so sorry about what you're experiencing! I've got Verzenio queued up a bit down the road, so that's also concerning to me...

So I don't have experience with that treatment, I'm sorry. But what struck me w/ your post is that maybe this is an allergic reaction? Is Verzenio one of the drugs that cause this? I guess I'm reading about the itching and shortness of breath...I've experienced both with anaphylactic reactions....but, I've typically experienced diarrhea (did I get that spelling right? who makes this stuff up?), not constipation, which leans away from the notion of allergies?

I imagine that it will be like sitting on pins/needles waiting until Tuesday, which I'm sorry about/can empathize with, but in the meantime, maybe take a Benadryl (sp?), in case that helps?

Good luck with it and please do let us know how you make out on Tuesday...fingers crossed and good vibes going out for you...

Lynn

[Wildcat1 in reply to Hidden]

Thanks... I did bring it up last month to my onc about what I was experiencing but when I brought up my shortness of breath she got very concerned and said we will see what the scans say. But I was thinking of an allergic reaction also. Guess we will see ...

[Jonesburger in reply to Wildcat1]

I’m so sorry you’re experiencing breathlessness. Was breathlessness included as a potential side effect on the label?

Verzenio is one of my next line of treatment and I hadn’t looked up the side effects yet. I found this article published last year. Here’s a snippet:

“Lilly said it has updated the label for Verzenio in Japan to include a warning on the risk of interstitial lung disease (ILD), a group of disorders that causes scarring of lung tissue and hence breathlessness.”

fiercepharma.com/pharma/lil...

[Wildcat1 in reply to Jonesburger]

That’s quite interesting. Thank you for the info. I will go over this tomorrow at my apt.

[Barb5]

I have been on Verzinio for over a year and I have the same side effects plus diarrhea and this week Dr did blood work and my liver count was high so he took me off that for two weeks and sending me CT scan because Verzinio can affect your liver. I was just learning how to handle side effects and was glad to be on it now we will have to see in 2 weeks what happens. Hope your side effects get easier.

[Barb5]

Just thought you may be able to lower your dose I did in beginning and it was more tolerable

[Wildcat1 in reply to Barb5]

I am on a lower dose ... they were talking about bumping me up to a higher dose once I get my scans if they are good but I don’t think I’ll let them.

[queeneee]

I have been on verzenio 100mg twice a day for 2 months. It gives me itching and swelling in feet, I soak in epsom salts, which helps - also exercise on bike and jogging. It is difficult to extract which effects are the verzenio and which are the faslodex. However, I would say it is getting easier and the itching is getting less. I have been using argon oil on my hair to improve quality and also extra moisturising and epsom salt baths for itchy skin. I also have some dermacare menthol skin cream which cools and helps. I hope things improve for you.

[Hidden]

It's called Verzenios in the UK and it's a horrible drug if you suffer from side effects. I'm sure many people get along with it just fine, but it wiped my wife out with diarrhoea and severe fatigue. A nurse told me that most people have to come off the higher dose. Her oncologist put her on Ibrance (Palbociclib) instead which she tolerated better due to the lower dosage.

[Sweeten_1]

I've been on verzenio since March. Had to reduce to 100 mg 2x day. Diarrhea is better. Sometimes constipation. Onc recommended Slow Move Herbal tea which helps. I had radiation to lower spine end of September due to Mets attacking nerves. Feeling better and pain stopped. I have been itching all over since but maybe it's the verzenio. Will see onc Tuesday.

[Timtam56]

I know nothing about Verzenio. Or what you are going through.

But what strikes me about your post, and others here in response is....that we have been put on these drugs to stay alive. And kept well, or semi well.

And then, having to put up with all the side-effects you are going through!

I'm so sorry you have to go through this. And really! What a rough trot you are having.

And sometimes I wish it was different for us.

Just saying.

[CincinnatiExperience]

Hi,

I have been on Verzenio for over a year, highest dose. Like others, it's hard to tell which drug to blame---Verzenio or Faslodex. I started out with horrible once-a-day diarrhea (took pills for that) until it suddenly went away. My hair had slight loss, and now has stopped growing entirely. It sure saves money on hair cuts? I am tired and they are now doing Procrit to improved red cell production. The worst part now is the fact that my toenails and finger nails no longer grow and were very brittle. It is quite painful when one breaks off at or bust above the quick. I use Lidocaine ointment to get through it, and pain pills, of course.

Remember, this crap is supposed to be keeping us alive!

Anne

[Lnlc]

Hi Wildcat1 -- I was on the 150 dose Verzenio and finally raised the white flag. The diarrhea was simply not controllable. The onc switched me to 100 and while it's a day to day calculation (how much antidiarrheal med to take and when?), at least I'm able to get on with my life! I found you and the other mentions about itching interesting, as that was driving me nuts. The itching could be from either Verzenio or Faslodex but within 4 hours of my first B12 shot, the itching stopped and has not returned. Weird, right? I posted about low B12 a week or so ago and anyone who has SE of diarrhea or vomiting, where food absorption is an issue, might want to have their levels checked. I wish you all good things with your results today. Ellen

[RockstarNav22 in reply to Lnlc]

Can you say more about b12 shots and why? Thanks

[Lnlc in reply to RockstarNav22]

Hi! Sometime during my Verzenio treatment , which lasted about 7 months, I was extremely fatigued, which could have been attributed to a common SE of this med. But my oncologist wisely decided to test my B-12 levels. They were way below normal--likely as a result of the constant vomiting and diarrhea. She started me on weekly shots and then rechecked. Still low so we continued the shots as the levels slowly rose, as did my energy level. I had to switch from Verzenio because of progression and have been on Capacitabine for two months. With no stomach and bowel side effects, I've been able to retain nutrients and my B-12 has stabilized (at least that's my theory about the improvement!) . Best to you! Ellen

[Barb5]

I just got taken off Verzinio after Maybe three years not really sure how long I was on Faslodex with it my liver count got high and now have to change to xeloda next week unfortunately Verzinio can cause liver problems I really didn’t mind the Verzinio one I learned how to handle the side effects of diarrhea not looking forward to changing to xeloda. I also lost weight on Verzinio which made me 😊 I hope you have good luck with it.

[Wildcat1]

Unfortunately I got barely out of the gate with verzenio as my scans showed progression in my liver and bones so I’m off to another treatment. I got almost 4 years on Ibrance and now in a year I’m going on my 3 rd treatment so now I will try AFINITOR. Any input on this drug would be helpful. Feeling frustrated...

[TammyCross]

I was about to ask about Verzenio. I have an 88 year old friend who had progression while on Letrozole, so her oncologist was going to put her on Verzenio. Until she spoke to me, she was going to refuse. She has work she is intent on finishing and does not want to take anything that interferes with her work, even if it gives her more time.I encouraged her because I am on Ibrance and find I can work just fine. She thought she should ask her doctor if she can go on Ibrance. I told her to listen to her doc.

Now I am thinking I gave her bad advice. I don't think she will tolerate the Verzenio side effects. Maybe she should try Ibrance.

[Wildcat1]

I had no issues on Ibrance was on it from December 2016 til June 2020 when I had liver progression. Up until then I only had bone. With some bone progression off and on. Verzenio did not work for me and I felt awful the whole time. But everyone is different. Have her talk to her onc about both drugs and why does he feel verzenio is the better choice he may have reason that you don’t know.

Best of luck to you.