Questions If Ibrance/Verzenio/CDK Inhibitors Didn’t Work For You

DivineMrsM
DivineMrsM Member Posts: 9,620
edited February 2020 in Stage IV/Metastatic Breast Cancer ONLY

Last March I had progression in the bones. I was switched from Arimidex only to Aromasin and 125 mg Ibrance. Soon the Ibrance was lowered to 100 mg. After 4 months, scans showed more progression, so Ibrance was stopped and I went on Verzenio, 100 mg twice a day starting in September for almost 6 months.

Verzenio side effects severely affected my quality of life. Nausea and diarrhea caused me to lose 15 lbs. Shortness of breath, lightheadedness and fatigue increased and after a few months, I barely went out. I could only get a few things done around the house each day and mostly laid on the sofa. I often had to force myself to eat. My body was hungry yet I had no appetite.

I wanted to give the Verzenio time to work so I put up with the side effects.

This week I saw the oncologist who instructed me to stop Verzenio. My bloodwork shows anemia and dehydration. The onc thinks those should improve in a couple weeks. I'm also scheduled for scans soon. I won't know until then if Verzenio helped. After scans, my onc will discuss other treatment plans and I do not want to continue with Verzenio even if it slowed progression.

I would like to know the reasons you had to stop taking CDK inhibitors. They seem to be a magic bullet for many, but my body finds them hard to tolerate. I don't think my body appreciated having suppressed red blood cells.

It's only been 3 days since I stopped Verzenio. One thing I notice is the return of joint aches from the Aromasin. While on Verzenio, my body did not ache. I'm eating foods to try to raise the red blood cell count. Nausea is somewhat less and the other symptoms remain. I am hoping within a couple weeks to feel less fatigued.

I'd appreciate hearing from others what you experienced while on the CDK inhibitors that bounced you off of taking them. I'd also like to know how your body adjusted after stopping them, and any other information you think is good to know. Thanks to all.

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Comments

  • Selkie36
    Selkie36 Member Posts: 31
    edited February 2020

    I was switched off Ibrance because it wasn't working. Turns out I don't have the CDK pathway. I take xgeva instead of Verenzio and don't have any trouble.

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  • Stllivin
    Stllivin Member Posts: 103
    edited February 2020

    I was taken off of Ibrance after 20 + months when a Pet scan showed liver involvement. My Ibrance experience started with two months of 125 with Femara then 100 with Femara then dropped to 75 with Faslodex. Then I did 6 rounds of Taxotere due to liver involvement. Liver was clear after two months on Taxotere. Now, my options are go with two more rounds of Taxotere, switch to piqray and faslodex or go with just Femara. So, I guess it was liver involvement that bounced me off of Ibrance. I was bummed!!!

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  • pajim
    pajim Member Posts: 2,785
    edited February 2020

    Was on Ibrance for a year. Went off because of progression. Was on Verzenio for three months. It didn't work.

    You have way more SEs on these drugs then I did. Bad luck of the draw I'd guess.

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited February 2020

    Hi MrsM,

    I was on Ibrance/Faslodex about 6 months. My MO took me off due to progression. I found it tolerable for the most part but the fatigue was brutal. I am now on Afinitor/Aromasin, stable, doing well on the drug. I find it much easier than I/F.

    Hang in

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  • Nkb
    Nkb Member Posts: 1,436
    edited February 2020

    Devine- I was on Ibrance for 15 months- taken off due to progression. I found it very doable, but, AA was easier for me too ( which surprised my MO- I think they think ibrance is a benign miracle drug) I didn’t have the nausea you describe - but had hair loss, anemia, leg cramps, parenthesias half way up both legs. Severe thirst, nose bleeds. Everyone is different in their response to Meds though. I know many people made ibrance bearable by lowering the dose and have longer breaks off it.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited February 2020

    It’s been 5 1/2 days since I stopped Verzenio and the sort of “recovery period” is very slow. My appetite is still low. I guess I thought it would come back immediately. Shortness of breath is still problematic. I still get lightheaded although not as quickly. I’ve been eating foods, when I can muster an appetite, that boost red blood cells, trying to help them “revive”. But I sometimes feel shaky during the day. I’m in my early 60s, and I think I have to recognize that it can take some time due to not being younger and able to bounce back as fast. Still taking it easy. Not really frustrated (yet). Just being observational I guess.

    .

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  • pajim
    pajim Member Posts: 2,785
    edited February 2020

    Huh. I'm trying to remember what it took to get off Verzenio. Christmas of 2018. I'm pretty sure it took about a week to wash it all out.

    I truly hope you'll feel better in a couple of days.

    BTW I've found that with each successive treatment it takes longer to bounce back. Cancer just ages us, no matter how young (or old) we are.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited February 2020

    Pajim, I hear the truth in what you say, that each treatment takes longer to bounce back from. My body was at a different place when I was diagnosed back in 2011. Other than, say, getting an uncureable cancer diagnosis, I was pretty healthy up to that point. It’s been 9+ years living with mbc in addition to the usual aging process. But the cancer hastens that process, for sure.




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