The Ibrance Trek: Good Morning Everyone... - SHARE Metastatic ...

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The Ibrance Trek

SoulJourney profile image
5 Replies

Good Morning Everyone,

I wanted to share my Ibrance journey as I have been blessed with what has been much longer than hoped for trek. The information may help some of you, especially those struggling with their neutrophil numbers.

I was on Xlodea for a year to Feb 2019 and was dealing with serious side effects. I was about to go on "Adria" when we discussed trying Ibrance with Fulvestrant. At that time, it was not very popular where I live, but we applied and were hoping for at least a 6 month run. And here I am June 2021 still on it!

I started at the max dose but my neutrophil numbers were so seriously low that after just one dose we dropped to 100mg. I stayed on that dose to August 2020.

I always went an extra week off each cycle to recover my neutrophil numbers. In August my oncologist decided we would have more consistent dosing if we dropped to 75mg.

It did not work and I still needed a break to recover. September she moved me to 5 days on 2 days off. I did not miss a single cycle after that and my neutrophil numbers never dropped below 1. It was a great success!

The last few months my numbers have been creeping up, scans have shown that there are no new tumours, a little uptake in the existing bone mets. I am trying to convince my oncologist to go back up to 100mg since the only reason for the drop was my neutrophil numbers but no luck so far.

The moral of my story is, before you drop to a lower dose because of low neutrophil count, try to change how your prescription is loaded if you can. If this drug is working for you, you want to hang on to it as long as you can! This option my work for others out there struggling.

Best of luck to us all as we search for the best treatment with the least side effects.

Hugs,

Tammie

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SoulJourney
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Southside25 profile image
Southside25

You're story is almost 100% my story. I've been on Ibrance for over 3 years, started on 125 but dropped to 100 then 75 because of low neutrophils and thrush. Also on a 5/2 schedule, and neutrophils are within the standard range. Regarding dosage, I've read several places that dose doesn't really matter; if Ibrance works for you, it works regardless of dose. 75 is just as good as 125. I've been on 75 for about 2 years with excellent results; reduction in tumor size and activity.

blms profile image
blms

I totally agree

Totheriver profile image
Totheriver

I am on ibrance too . She just put me on 5 days on 2 off and I am still struggling a bit wit my neutraphylls . Hopefully I can stay on this cause it has kept my Mets at bay.

SoulJourney profile image
SoulJourney

It took a bit to settle in at about 1.4-1.6, hopefully you will get there. My oncologist wanted to achieve consistent dosing.

RLN-overcomer profile image
RLN-overcomer

Greetings: Sister/warrior. You are truly an each one, teach one caring sister. I know this information will be helpful to so many, of our sisters, warriors, and Dr.s. GOD bless you😇.

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