Verzenio

[Livinthedream]

Hello ladies

After ibrance failing how many of you were put on verzenio? And what are the biggest complaints with it? Any tips would be great thank you

[Livinthedream]

I was on ibrance for 7 months, i had a really hard time with low counts and fatigue. My first scan showed slight decrease in tumors, but my scan (july) showed more metabolic activity by then i was on the lowest dose.

So i was taken off ibrance and letrozole, put on faslodex since august.

I met with a new oncologist whose just moved here locally he suggested a liquid biopsy, the results came back that verzenio and faslodex would work for my cancer, but my oncologist at the teaching hospital i met with yesterday thinks I won’t be successful on verzenio.

He also told me something very profound. These are his words .... ibrance is not as effective in lower doses because you cannot cut a pill in half and expect to work the same as an entire pill. He said he has challenged the drug reps and the clinical trials and believes that ibrance should not be the first line of targeted therapies bc of low counts and almost always dose reductions. What he said made total sense to me.

Something that was concerning from my liquid biopsy results were that anastrozole and letrozole have no affect on treating my cancer, this was on my guardant360 results. What really upsets me is i had a full body rash while taken anastrozole and was taken off of it until my body healed then placed on letrozole and again had a rash, within 6 months was diagnosed with mets to spine.

[Hidden]

I was on Ibrance for three months. I did not "fail" with Ibrance because of progression, but rather because of a severely low white blood count. I am still a bit angry with my onco for keeping me on it for three months. I was on 125 mgs. and it was the first drug given to me (besides the falsodex injections). All she was me was that "food may taste different." It was my first experience with any cancer drugs. My week off I was so sick, I would lay in bed and feel like I was dying. I took her this and I did not know at the time (which I then learned from this board) that other oncos lowered the dosage. But a common infection I would get in my upper thigh and usually all it required was antibiotics and it would go away in the past, got so much worse and severe. Then THEN took me off it and give me five weeks of antibiotics and my immune system was so shot, the antibiotics did nothing. It was like boils inside of my skin near my upper left groin area and I was unable to walk without severe pain. The sensation of my that area of my leg rubbing against my other thigh or clothes was severe. Then after weeks of antibiotics and barely being able to walk without, I had to have surgery where they cut large tunnels in my upper groin. i was told and they were right the recovery was excruciatingly painful. Wound up back in emergency room twice, had HOLES in my thigh, have to have a visiting nurse come every day to wrap it because I was unable to do it myself because of where it was located. I was told one month recovery, it took FOUR months for the holes to close and now I have a large ugly scar that that hurts.

So for four months I was off of Ibrance and only doing the injections. It was rough as I live alone. She THEN said she was keeping me off the Ibrance (as If I would take it again). I wish I knew enough early in the game to ask for a lower dose as others have done.

She then put me on Verzenio. First the 150 mgs. twice per day (no weeks off). I could not handle the 150 mgs., the diarrhea was so severe and stomach pain. I stopped it after two weeks, went back and told her no can do. She then put me on 100 mgs. twice per day and again it felt no different. Stomach pain, headaches, but the diarrhea...it was either constipation or severe diarrhea where I was afraid to leave my house. Stopped that after two weeks.

Now, I am on 50 mgs. (the lowest dose) twice per day. I do NOT feel as tired as I did on the Ibrance. but I still suffer with either severe constipation or diarrhea but not as bad as the higher doses. It seems I am either taking Imodium AD or lactose rx for constipation. but I still prefer this drug over the Ibrance.

[Southside25 in reply to Hidden]

When I started on Ibrance (125mg), my biggest side effect was various GI issues: constipation, diarrhea, sometimes really severe intestinal pain which would radiate up my back (gas?). I've never had any of these problems other than occasionally like too much food on Thanksgiving. A friend recommended taking a magnesium supplement. I've been taking one 250mg tab every day and it makes a huge difference. I've been reduced to 75mg Ibrance and when I ran out of magnesium, the pains returned in a couple of days. Within a day or so, the problems went away when I started back on it. It's easily available at Walgreens, Target, etc. and is cheap. I would strongly suggest you try it and see if it helps. You'll only be out a couple of bucks if it doesn't work for you.

[Hidden in reply to Southside25]

At this point, I will take a chance and try it out.

[CincinnatiExperience]

Greetings,

I started on Verzenio this summer. 150 mg twice per day. I take it at 6 and 6 (can't remember why I decided on this timing). The diarrhea was terrible for the first 4 or 5 months, then suddenly subsided. Lost a lot of hair in the beginning, but that also seems better. I have really bad neuropathy in my hands and feet, and food tastes like nothing.

If something thinks it will help you---go for it. Diarrhea is not a good thing, but as long as you request fluids at every injection (assuming they are still injecting you with something) you should be able to live through it.

Anne

[Cafeole2]

When I received Verzenio from Acredo pharmacy it came with 3 boxes of anti diarrhea pills. That told me the side effects to expect. In deed, there were nights I was up 4 x nite. I was told to drink at least 4 bottles of water/day. I had a hard time drinking one. That may have created my problem. There were days I took 5 or more Imodium. I lost weight and had to be admitted to the hospital for a-fib and hydration. I had been on Verzenio for 6 months. Not everyone had my situation.

I believe I developed a bacterial infection

which may be why I spent 10 days in the hospital. I then took Ibrance and Faslodex for 6 months with no side effects unfortunately it stopped working. I’m now on Xeloda and Exceva. Other than toe & finger tenderness I’m tolerating it well. I know others who did well on Verzenio,

I pray you have no side effects. Drink alot of liquids and don’t hesitate to take anti diarrhea meds if needed. xoxo

[Livinthedream in reply to Cafeole2]

Thank you all the best to you