Anyone on Ibrance 75mg for long term ? - SHARE Metastatic ...

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Anyone on Ibrance 75mg for long term ?

caw517 profile image
7 Replies

I have been on Ibrance with no progression for 28 rounds. First round they had to drop me to 100 mg due to extremely low WBC and I have been on that ever since. I have had the usual fatigue, thinning hair, some mouth sores but have hung in there. Also on aromasin. Unfortunately this past month my counts dropped very low again. Had to stop an extra week. now we'll see if I can go back o the 100 mg. Wondering if anyone is on 75 and for how long it has worked at that level.

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caw517
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Wintervt profile image
Wintervt

Hi caw517,

I was diagnosed in with mets to the pelvis, spine, ribs and skull in March. I take letrozole and receive a monthly injection of Lupron and Denosumab. I started Ibrance in May at 75mg and I am on my third cycle. With each cycle my WBC has been super low and I have had to delay starting a new cycle each month. That being said, my tumor markers have trended down (in April they were 400 and now they are at 75).

Juliandrea profile image
Juliandrea in reply toWintervt

Wow!! That is amazing, what a difference in such a short time. This is a great story and amazing news. Keep up the good work. We can all learn from each other with this dreadful diagnosis, but we are strong and will not let it take over no matter what.

blms profile image
blms in reply toJuliandrea

I am in 100 mgs but would Liberia’s drop to 75. At Georgetown my doctor has a patient that has been on 75 mgs fir 6 years and doing well.

ALL dosages seem to work just as well. It depends on whst our individual bodies can handle.

Juliandrea profile image
Juliandrea

This is a great news story, thank you for sharing. Especially for those that need a boost, this is great news.

Buffwright profile image
Buffwright

Individual results are so varied! I wonder if anyone has studied that.

I started on 125 in May ‘16 and after 3 months, experienced dizziness so we dropped to 100. What is extremely low? My lowest neutrophil count was .6 (600?) and is back to my usual .8. My doc doesn’t seem concerned, and i’m Still traveling (eh India and Puerto Rico) My Pet/CT scans have been clear. ( I was originally diagnosed at IIB back in 1994.)

My doc said that there’s no significant difference in efficacy between 125 and 100, but we haven’t discussed 75. It’s good to know someone has been on 75 for 6 years. We’re each different....

Debdavenpo profile image
Debdavenpo in reply toBuffwright

Ibrance has only been around since the beg of 2016 unless there were in some sort of clinical trial.

lynnhbtb profile image
lynnhbtb

I've been on 75 mg. for 5 rounds. First scans after 3 months showed fulled treatment response. I'm STage IV with bone mets. All but one spot on my C-spine is gone. The side effects (tired, anemia, low WBC and Neutrophils and a couple of infections) are worth the scan results. My onc. says we'll keep at 75 mg. for now. Perhaps increase to 100 mg. I'm also on Faslodex injections 1x per month. Best to you!

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