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Ibrance delayed

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I saw my oncologist on Tuesday and my neutrophils were at .4 which is the lowest ever. He is taking me off of Ibrance for a month and I will have a bone scan on the 8th and CT scan the following week. He is then going to alter by Ibrance dosage but is unsure what it will be, 2 weeks in and 2 off or 1 on 1 off. I really wish I could take it as prescribed. My cancer has stayed the same but I feel it could improve some if I could actually take the Ibrance. Frustrated and worried why my neutrophils keep bottoming out.

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22 Replies
nstonerocks profile image
nstonerocks

Hi Sarcie

There have been a lot of posts lately around Ibrance and starting, stopping and adjusting the dose. Deep breath. You will do no harm in a month off. In fact, it will help you reboot your immune system and prepare for the new dose and or schedule. I was just rereading my post from 3 months ago about taking an Ibrance break. It was great and I felt so much better after it. Take this break as an opportunity to do good things for yourself and reinforce self care, whether it’s diet, meditation, prayer, massage, etc. Don’t be afraid. Your body will thank you and your doctor will help you work this out. It’s only one month. 💕🌈

Barbteeth profile image
Barbteeth

I had five weeks off Ibrance and restarted it and mine are 1.8 which is good for me

I panicked about stopping but realise it’s not a big deal so don’t worry...are you on the 125 mg

Barb xx

in reply to Barbteeth

No. I am taking 75 mg and still have to wait three weeks each cycle to restart. I was off for 6 weeks in October for my hip replacement surgery. It seems I spend more time off than on it.

Southside25 profile image
Southside25

I had very low neutrophils when I started Ibrance at 125. I've reduced the dosage (or my onc has reduced the dosage) to 100 and now to 75. Neutrophils are low but within the accepted range. I've been on 75 for 4 months and had CT and bone scans last week and remain in remission - it hasn't spread and everything is stable. I've read that if Ibrance works, it works regardless of dose. I wouldn't be at all concerned about reducing dose and see if that brings your neutrophils back up.

in reply to Southside25

I am taking 75 now so he is trying to figure out a different schedule

Mindysooty profile image
Mindysooty

I was the same a few weeks back. Only off a week and neuts shot up from 0.7 to 1.9. On week 2 of round 3 but honestly Im not feeling great at the mo. Ive been ok on first two cycles but this time I dont feel well. Already got nose sores mouths tender and Im shattered. Got a feeling I'll end up lowering dose or changing how I take it but tbh, ive learned so much on here so dont think I'll worry as much. Try to make the most of your time off it to recharge your batteries x

in reply to Mindysooty

Thanks. Mine usually drop to .5 and take three weeks to reach 1.4. I’m takin 75 now so if this doesn’t reboot my system I’m not sure what he will do.

Sarcie - what is your dosage please? Several of us have lowered from 125 mg to 100 for various reasons. My reason was crushing fatigue. My results are stable and my onc and other research indicates it is still efficacious. My energy is much improved. Ask your doctor about this option. Good luck.

in reply to

I’m on 75 and my neutrophils still drop low and take 3 weeks to recover. My body doesn’t seem to like the Ibrance. I’m hoping an altered schedule will work. My cancer has stayed the same the last year and a half. No improvement but not worse.

in reply to

Ok. Wishing you continued stable results!

Charlie_99 profile image
Charlie_99

So I’ve been on Ibrance for 7 months now and have had to go off it as well. Started on 125mg and it cratered my neutrophils too the first month with constant stomachaches and heavy fatigue. Took a month to rebound and then started 100mg and still had similar issues. So been on the 75mg now for 3 months and my neutrophils don’t drop quite so low now (just below 1). But still have heavy fatigue especially on week off. So this past month I started Vitamin C IV therapy once a week and on my week off now which again is usually my worst week. But somehow am feeling so much better, not near as fatigued and my neutrophils are much better too (near 2). Could be a coincidence but I’ll take it and will see how the upcoming months go. There’s something about feeling better that builds confidence and we’re all a little different but trust what your body is telling you. And don’t sweat the breaks in between as like others have said it’s still in your system. You may do just as well on lower dose.

in reply to Charlie_99

Thanks. On the lowest dose now so i guess it will be an altered schedule. Sad thing is two cycles ago I had so much energy and was doing a ton more things than I had been doing.

Charlie_99 profile image
Charlie_99 in reply to

Oh that’s frustrating to go from feeling good and having energy to not. But I guess you know that you still can feel good on these meds. Hoping you rebound soon.

Barbteeth profile image
Barbteeth in reply to

Sarcie...if it’s any comfort my oncologist has only one patient on the high dose...most of us are on 100 or 75 dosage

Barb xx

in reply to Barbteeth

It does. I always have a ton of side effects with medications so I guess I shouldn’t be surprised but when it’s one to save your life it’s hard to not worry.

Barbteeth profile image
Barbteeth in reply to

Well all doses work from what I’ve gleaned

I think we’ll all continue to worry for ever...horrible thought though

Barb xx

2011biker profile image
2011biker

ive been on letrozole/ibrance 125 for one year now..feeling great,,just some hair loss and some numbness in a few fingers,,but I can live with that,,had bone scan in mid july and all looks good,the very small spot on my t-1 vertebe they were concerned about is shrinking in size and I only have ibrance and the good Lord to thank for that!!

Thank you so much for the encouraging words. ❤️. I knew something was wrong as I was beat and couldn’t get enough sleep. Still feeling blah and I’m finishing my second week. Bone scan on Thursday and a ct scan before I see him again on the 20th

mariootsi profile image
mariootsi

Enjoy the break as the Ibrance continues working.

My low platelets on Ibrance have caused me alot of stress but my onc said it's just one of the side effects of the Ibrance. She has changed my schedule and it has helped.

Apparently there are many options for dosing so I try not to stress over this thing anymore.

in reply to mariootsi

Thank you. I’m trying to enjoy the break but I can’t get my mind to stop.

mariootsi profile image
mariootsi in reply to

I know! It really never stops. I think we have to try so hard to slow it down... at least somehow.

❤️

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