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Ibrance (Palbociclib)

Romansma
Romansma Member Posts: 650

A bottle of Ibrance came in the mail today. I will start taking it tonight with Femara. Hoping that others starting on this drug will join me here to talk about side effects and how to avoid or treat them. So far, I've been warned about low white counts. I run very low as it is, probably because of my extensive bone mets. Anyone currently on Ibrance?

Edited by Mods to add Mod Note: Unfortunately, Romansma passed away in 2016. Our thoughts are with all who loved Hope.

Edited by Mods to add:

For more information on this medication, see the main Breastcancer.org site's section on Ibrance for information on how it works, who it's for, what to expect, and side effects. Also, read the latest research on the Research News on Ibrance pages.

Pfizer Oncology Together is a first-of-its-kind program for patients taking Pfizer Oncology medicines that offers dedicated social workers called 'Care Champions' to help navigate the complexities that accompany treatment, such as identifying resources to help find emotional support, and workplace transition, transportation and financial assistance.

For cancer patients taking a Pfizer Oncology medicine (e.g. Ibrance) or caregivers, please visit www.PfizerOncologyTogether.com.

For live support call: 1-877-744-5675

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Comments

  • sandilee
    sandilee Member Posts: 436
    edited February 2015

    No, but I just want to wish you luck. I hope it does the trick and treats you kindly. {{hugs}}

  • Romansma
    Romansma Member Posts: 650
    edited February 2015

    Thank you Sandilee! I'm hoping to be an overachiever on this! Exceptional response is what I'm after!




  • lenn13ka
    lenn13ka Member Posts: 96
    edited February 2015

    Romansma,

    Sorry for posting on this Stage 4 forum. I am in a phase 2 clinical trial at Dana Farber/MGH combining Palbociclib and Hormone therapy for early stage BC. I am just finishing up my first month. I would love to join a conversation about side effects, as I have only talked to one other person on this site who has been on the drug. I am taking the standard dose and have already had my 14 day blood work completed. There are about 80 people enrolled in this trial. However, I don't want to intrude here, so want to make sure it is OK.


  • Romansma
    Romansma Member Posts: 650
    edited February 2015

    Yes, please join us. Side effects shouldn't be too different between the stages, although PFS and OS will be. Do you take with or without food? Morning or evening

  • lenn13ka
    lenn13ka Member Posts: 96
    edited February 2015

    They want you to take it with food the same time every day. I have been taking it at 6:00 pm. I guess according to the trial nurse it gets absorbed better. My blood counts were a little off on day 14 but not enough to make any changes.The first couple of weeks I had no issues at all. Really tired yesterday and today but only have 2 days left in this period and then a week off, so it will be interesting to see if you rebound that week. Back at Dana Farber next Friday for more blood work

  • nancyh
    nancyh Member Posts: 185
    edited February 2015

    Hey Romansma, thanks for starting this thread.

    By some miracle, I was able to get palbociclib (with Femara) via expanded access on clinical trial. I started a couple weeks ago and have had zero side effects. I take both pills in the evening with food. This drug combo is a long shot for me as I've exhausted all the endocrine therapies, but even if I get a couple months break from chemo, I'll be happy.

    Look forward to hearing others' experience.

  • brandall
    brandall Member Posts: 97
    edited February 2015

    I have been on a trial since last June where I may or may not be on palbociclib. I personally feel I might be on the placebo arm because I have had zero side effects. I'm taking it with faslodex and I haven't really had any side effects from that either. Sorry I can't be more helpful. I'm on a message board for people who were on the CDK 4/6 inhibitors and most people only report the low white blood counts. HTH!

  • Romansma
    Romansma Member Posts: 650
    edited February 2015

    Ok, good. Decided to take my dose right after dinner last night. Good to know that's what others are doing too. There were no instructions with the packaging when it was delivered.

    I am not taking this on trial and yes, it's a bit of a long shot for me too, but I'm not interested in chemo right now.

  • Springlakegirl
    Springlakegirl Member Posts: 10
    edited February 2015

    Romansma,

    I just noticed this thread! I have just been approved to receive Palbociclib/Letrozole, and will start on it as soon as I can. My pharmacy is trying to get the drug, but it shouldn't take too long. Thank you for starting this thread, and please continue to post any side effects you may be experiencing. I will join this conversation as soon as I start. Thanks!

    http://deniseneish.com/

  • lenn13ka
    lenn13ka Member Posts: 96
    edited February 2015

    I will try and share as much information as I can from the trial I am on as I will be followed pretty closely . I have access to the trial nurse and see a Dr. Once/month. The trial is basically about the side effects of the drug and is a feasibility study on whether palbociclib can be tolerated enough to become part of standard treatment

  • Romansma
    Romansma Member Posts: 650
    edited February 2015

    Springlakegirl, I was told you could only get Ibrance through a specialty pharmacy. Is that what you are doing? If not, you might call MO and ask them to check. When I went on Afinitor last year, my MO gave me a prescription to get filled which was not the way to do it. It could only be filled by specialty pharmacy, too. It wasted a few days for me.



  • Springlakegirl
    Springlakegirl Member Posts: 10
    edited February 2015

    Yes, they are getting it through a specialty pharmacy. Thank you!

  • Romansma
    Romansma Member Posts: 650
    edited February 2015

    Great! Should only take a few days. Day 2 is down the hatch! I haven't noticed anything different.


  • SusanAnn
    SusanAnn Member Posts: 33
    edited February 2015

    Hi everyone, I am presently in the Palbociclib, Phase 3 trial with Faslodex since Nov 21, 2013. If I may be of some help in any way, I would love to join in! Don't want to intrude unless everyone is ok with it.

  • Romansma
    Romansma Member Posts: 650
    edited February 2015

    Welcome, Susan. Please share anything you have experienced. I'm a newbie on Ibrance and don't really know what to expect.


  • lenn13ka
    lenn13ka Member Posts: 96
    edited February 2015

    The first two weeks I had absolutely no side effects. This week however, each day I have felt increasing fatigue, almost like mono. My last day in the cycle is today and then my week off. I am interested to see if you bounce back during the off week. Like all these drugs, they don't take weight into account with the dosing and wonder if you are smaller should you have a lower dose? So much to learn about this drug and how it works. But, we need these trials to make progress. Glad to see something moving through the pipeline Faster, especially for you stage 4 ladies.

    After my first month, I will have a LIST of questions when I go back to DF next week.


  • Romansma
    Romansma Member Posts: 650
    edited February 2015

    Good to know, Lenn. Thanksfor sharing.



  • daisylover
    daisylover Member Posts: 173
    edited February 2015

    Lenn, my energy bounced back on my weeks off - my neutrophil counts also came back up, in the beginning enough to stay on the trial. I believe that it helps to exercise - even though it's difficult through the fatigue. (There are 2 dose reductions allowed on the feasibility trial. They may make you wait a cycle or 2 to reduce.) Try to steer clear of people with colds - after at least 5 years without a respiratory infection (children and hubby getting sick many times), I had 3 intense infections within 2 months on Palbo. I even required inhalers to shake one. I became very in tune to who had the sniffles... Hope the fatigue levels off for you.

  • lenn13ka
    lenn13ka Member Posts: 96
    edited February 2015

    Thanks for the info. Daisy.... Looking forward to the week off. I usually exercise everyday ( yoga/cross country skiing, etc. but definitely pushing to do it this week.) I didn't fight it today ... Did nothing much.

  • SusanAnn
    SusanAnn Member Posts: 33
    edited February 2015

    When I first started this study, my only complaint was a headache and slight nausea for the first two weeks, then the fatigue set in. The final part of the cycle ((off meds for a week) did and still gives me tiny red pimples usually on my legs and arms that itch non stop. My WBC slowly started to go down, including RBC, HGB and HCT every month. WBC hovers around 2.3 to 2.6. Even though its quite low I have never gotten a cold or flu, although I am always careful about staying away from anyone who appears sick! I just want to encourage all of you that for me it has been very doable, in spite of the fatigue. Lenn mentioned exercise every day - if you are able to do it, then I feel it would help with the fatigue. For me I have been on this drug combo Palbociclib/Faslodex for over a year and my cancer has for the most part neither progressed not has it shrunk. There are many others in this study whose cancer has shrunk substantially and they are continuing to do well! I wish all of you the very best on this drug! Romansma I hope that you are an overachiever!!!

  • LolaHank
    LolaHank Member Posts: 6
    edited February 2015

    Hi ladies, I took my second dose today. So far, feeling fine. My onco wants bloodwork done weekly while on this. So glad to be here and listen to everyones opinion!

  • Romansma
    Romansma Member Posts: 650
    edited February 2015

    Does getting out of bed to get the remote count for exercise? Kidding, sorta. Too much pain for real exercise, but I stay active taking care of kids and dogs and traveling and living. My MO is worried about WBC for me. I hover at 2.1-2.6 without any treatment. Probably because of the extensive bone mets. Worried that I will have to take too many breaks to let my blood counts recover. Oh well, cross that bridge when I come to it. Day 3 down the hatch!



  • lenn13ka
    lenn13ka Member Posts: 96
    edited February 2015

    Romansma - Kids, dogs and remote all count in my book! Everything I hear about the drug is that they can work with the dosage in order to keep you on the cycle rather than have you go off. I know that was true in the Paloma trial and not too many had to drop out. Yeah for day 3 !!! When will they do your blood counts?You do sound like an overachiever!

    Welcome SMR...


  • 3Holly
    3Holly Member Posts: 201
    edited February 2015

    Hi SusanAnn,

    I have been on Faslodex shots and have been getting those red bumps as well, and they bleed (they are very itchy so I can't resist scratching them a little). I am not (yet anyway) on the Ibrance so it must be the Faslodex causing the red bumps, hopefully the Ibrance doesn't cause more of them. I hope they don't get infected if I go on Ibrance since low WBC can cause infection. Still waiting to hear from the doc on the Ibrance, and thank you everyone for sharing your experience - good luck everyone!

    Romansma, I agree you are handling a lot, I could not handle caring for a dog along with kids (these winter storms alone have done me in!)


  • Romansma
    Romansma Member Posts: 650
    edited February 2015

    Good morning! I am having my blood drawn next week, so we will know how it's effecting wbc pretty early on. Hope you hear soon, Susan. Did I mention 4 dogs? Only 3 kids still at home, so that's getting easier. Yup, I am cra cra! We live near the beach, so no snow here. Headed to the mountains tonight to take in a little snow at Big Bear Lake. Hope we get snowed in and have to play cards all day in our jammies! I have to say, my mood has been soaring since getting off Xeloda and starting Ibrance. Feeling so hopeful! Have an good day everyone.

    Hope

  • pearlady
    pearlady Member Posts: 390
    edited February 2015

    Romansma I have just started on Ibrance also along with Halevan.  My onc mentioned taking me off of the Halevan if he sees the results he expects with the Ibrance/Femara.  I can only pray that we all get good results. 

    I do neupogen two days in a row after my Halevan to keep up my WBC and my onc wants me to continue to do neupogen with the Ibrance, even if I go off of Halevan.  Not sure how much and when he will have me do the neupogen, but we are going to discuss.  I'm wondering if anyone else does neupogen.  I have not really noticed any side effects and my WBC have stayed within normal range.

    I have noticed slight nauseau for several hours after taking the Ibrance, but I am okay with that.  I think of it as weight control.

  • Romansma
    Romansma Member Posts: 650
    edited February 2015

    I haven't noticed any nausea, but I'm taking it at night. Maybe I'm sleeping through it. My husband woke me up 2 nights ago around 3am because I was making a weird moaning sound. I think it was because of the back and hip pain, but who knows. Maybe I was having one of THOSE dreams! Doubt it! Menopause has took care of that

  • pearlady
    pearlady Member Posts: 390
    edited February 2015

    Romansma thank you.  I had been taking in the morning, but think I will switch to taking at night.  You're right, you probably sleep through the nauseau.  I took Afinitor at night and never had any nausea.

  • thinkpositive
    thinkpositive Member Posts: 4
    edited February 2015

    Hi

    Can anyone tell me if you lose your hair on Ibrance? I saw that hair loss was one of the side effects.

    Thanks!!

  • pearlady
    pearlady Member Posts: 390
    edited February 2015

    Don't know first hand about hair loss.  The pharmacist at CVS Caremark told me that it is listed as one of the possible side effects, but only a small percentage of women lose their hair.  Hope this is the case.  Would be interested to hear from those in trials who have firsthand experience.