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Increased symptoms during 2nd week off Ibrance

MG52 profile image
MG52
8 Replies

Love Ibrance! Has really improved my symptoms of MBC in multiple bones overall. That said, several times, I have been off it for 2 weeks instead of the usual one week, while my white blood counts come back up to normal. During the 2nd week off I experience a resurgence in symptoms: fatigue, low appetite, and extreme increase in pain.

My oncologists say it could not be from being off the medication for two weeks but my body says otherwise. Anyone else have that experience?

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MG52 profile image
MG52
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8 Replies

Hi MG52 (for a second, I thought your "handle" might be about having a super cool car (!) but then realized it's probably your initials/age!)

I'm very sorry about the issues you're having. Are you saying that you/your doc think that the break from meds is giving your cancer the opportunity to progress? If this is the case, is s/he still advocating the long break?

I don't have experience re: a long break with Ibrance...Have taken it religiously (in fact, it IS my current religion!) for 5+ years, but one thing struck me in your post - your reference to taking a break until your WBC's come up to "normal".

I'm wondering if you mean that "literally"...According to my lab reports, "normal" is 4.8 parts per 1000. My WBC's are usually 1.7 or 1.8. So nowhere near normal, but deemed "high enough" for me to continue. Or are you referring to ANC's? (I really don't mean to pepper you with questions...I'm sorry.)

So I'm wondering if your doc thinks that it's more important to have the WBC's/ANC's to potentially fight the cancer (is this a thing?) as opposed to having the Ibrance? Do you happen to know if this is the case? I've sometimes wondered if by taking the meds I'm reducing my body's ability to fight, in the process....like, which force is more important?

BTW, I'll mention something re: the WBC's and ANC's...mine have always (5 years) been quite low but I've never gotten sick, not even a cold. So I do ask myself if there's more to an immune response than these numbers would indicate...

Take care, I do hope you get it sorted out...It's like a balancing act, sometimes, pros-cons...

Be well,

Lynn

KateBush profile image
KateBush in reply to

Hey, hii , 5+ years on Ibrance ! , so how many years is it? I want someone to tell me they have been taking it successfully for a long time. I’ll have been on it 2 years this September. Feeling that anything could happen feeling and looking for that I’ve been on it for ages ! Keep well. God bless

in reply to KateBush

Hi KateBush!

I'm so glad you're doing well on this treatment! You're not yet even at "average" and, as I obsessively studied the PFS (progression free survival) "Kaplan-Meier" charts early on, I learned that the curve flattens and so nearly every month/scan you get through decreases the likelihood that you'll "fall off" the chart the next month or scan! :) *charts available online...google Kaplan-Meier PFS Ibrance)

I've been on Ibrance for just over five years. Paired with Letrozole for about 40 months, now Faslodex for about 20. I might go back to the combo with Letrozole or similar at some point, but that's a different story, i.e. not sure I actually had progression/should have changed.

From what I understand, there are women who've been on this treatment even longer than I have...even a few from the initial study, pre-2015, when it was FDA approved and I stared it.

Everyone's different, needless to say, but I, for one, am so incredibly grateful for the many years of good, relatively easy living I've had with this treatment! I'd suggest you not sweat the "small stuff"...fatigue, neutrophils, bad hair, etc...and just enjoy the gift of time and relatively good health you've been given. :)

Be well,

Lynn

KateBush profile image
KateBush in reply to

Hi lynnfish

Thank you for your reply. I certainly really am grateful that Ibrance is working for me and actually I have had very little hair loss and small time issues you mentioned luckily. It’s just nice to hear from other people that are doing well and have been on it even longer cos at the back of your mind , that ‘one day’ always lurks around. Certainly do feel blessed and making the very best of the time I have been given. God bless you too and keep you well.

KateBush profile image
KateBush in reply to

Sorry forgot to say thanks for the link too!

GollyG profile image
GollyG

Hi, I certainly feel at my worst in my one week in four off the medication - I don't know the cause but imagine it's the body rebuilding its white blood cell defence that makes me feel lousy. I don't think it's the cancer at work - I clearly had cancer for years before diagnosis and generally felt great! Take care,

Gill

Kdiet profile image
Kdiet

I too am off for two weeks between Ibrance dosages. Now on 75mg. The 6-8th days OFF are the worst. A full drug withdrawal. Told my Onc yesterday that I feel better on the Ibrance than off. You are not imagining your symptoms.

Kiera49 profile image
Kiera49

It's really good to hear people who have been on ibrance for many years, I will be 2 years in February and onc is only expecting it to work for 2 years, feel great on it

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