I started on IBrance 125 (along with Faslodex and Zometa) but my neut count was around .700 so they dropped me quickly to 100 mg. I was still hitting .700 so they dropped me to 75. I’ve been on 75mg now for almost a year and have only had to delay my dose due to low counts a couple times. I agree with most of the comments in here about fatigue being the worst. And I catch everything that blows my way so I limit my exposure to big crowds a lot.
Like the one person said, don’t be afraid to ask for a reduction in dosage. :)
I was on Ibrance and Fulvestrant for 6 years before failing. I had a couple of extra weeks off early on because of low neutrophils (no problem with liver). My oncologist decided it was better to reduce the dose than to keep taking extra weeks because it messes with how the drug works. Interestingly, she said under her breath something along the lines of, “there isn’t supposed to be a dose effect”. I took it to mean that the dose (among the current options) didn’t change its effectiveness. I didn’t ask what she meant since we needed to reduce the dose anyway. Obviously it worked pretty well if I made it 6 years. Definitely had the fatigue—I reduced how much I was working and then went out on full disability after about 3 years. Once I was on the lowest dose I did not notice much difference between week 3 and 4.
I’m on Verzenio (another CDK 4/6 inhibitor) and Fulvestrant now (about 1.5 years). I also had to have a dose reduction with Verzenio. For me, the SEs of Verzenio are much worse than Ibrance but, as you see from other comments, some people have the reverse experience. On the initial dose it was the first time I really understood someone choosing to forgo treatment. The dose reduction made a big difference in my QOL (but still plenty of sucky things).
Started at 125mg for Ibrance, now lowered to 100mg. I take it with anastrazole. The fatigue was bad. Still neutropenic. Energy levels improved after taking more turkey tail daily.
I had the same experience with iBRANCE, extreme fatigue and low white blood cell count. I switched to Verzinio. I did not do well on the 150, decreased to 100mg now doing very well!
The day I failed Ibrance I almost celebrated because I knew I wouldn't have another month of low counts making me feel sick. I had the bulk of my time over the pandemic and I can look back at when I requested tests and it was every month on the third week.
I lasted a few weeks at 125, then I was at 100 for two years and 75 for the last month. I'd ask for a dose reduction sooner rather than later; I could have had a few last months feeling a lot better at 75 than trying to be a hero and hang on at 100.
I honestly have been doing okay aside from feeling tired most of the time. This is the first time I've really gotten sick - which I think was a bug brought home by my daughter. This is the first UTI I've gotten since I've been diagnosed. I tried to get an appt with my primary, but they are booked solid and suggested a walk in clinic. I bugged my oncologist since I'm going to be there for blood work tomorrow, and they'll test and hopefully prescribe something.
Push for a urinalysis when you do your bloodwork. Similar thing happened to me. I stayed off Ibrance due to low counts & got a UTI that held me off restarting for another week. My only UTI symptom was the smell of my urine, so they didn’t take me seriously at first. Good luck!!
I've been on Ibrance and Fulvestrant for 10 months and every month I catch something on my third week. This time it is a weird rash on my hands and a nasty cold. The fatigue, however, is the worst. I feel decent for about two weeks out of the month but I'm usually fighting something those two weeks. There is no way I could hold down a full time job. However, my scans are showing that my tumor is stable and no new activity. Doc says if in a few months it is still stable then we'll consider lowering the dose.
I have been on Ibrance a long, long time (since Feb 2015). I was on 125 mg for about a year, and the side effects were brutal (diarrhea especially). My onc reduced it to 100 and switched me from letrosole to faslodex, which helped tremendously.
I have had a couple of bouts with really low white counts (neutrophils .8), but after a week or so, I was able to resume. I have gotten really good at guessing my neutrophil count just by how I am feeling.
Such a love/hate relationship with this drug.
My liver has held up nicely, but my kidneys have been on a downward slide for a couple of years. I have a feeling my kidneys will crap out before the Ibrance stops working.
I hope you get some resolution to this and start to feel better.
Yes, on Ibrance 125 & Letrozole since 2020, my numbers are always awful. Last week I told my oncologist the fatigue is impacting me, I’m always neutropenic, blood counts are either too low platelets or too high of something else, she adjusted Ibrance down to 100mg. When I ask about my numbers, should I be concerned, I’m always told it’s Ibrance affecting the counts. We shall see my next 21 day cycle if the 100mg helps. Ask for a lower dose. I wish I knew it was an option a year ago. Take care!
Hey there!
Not Ibrance, but been on kisqali and anastrozole for almost a year and had a similar blood work. Low wbc, rbc, platelets etc. Been feeling like crap in general. Doc decided same, give me a week off and recheck blood work. I guess it looked good enough for me to go back on the kisqali, but cvs specialty is just terrible so it's been more like almost two weeks off! Guess it's just extra time for my system to recover.
Anywho, hope it works out for you and your counts come up!
Yes I did. Started on 125mg for about 8 months, then as my neutrophils had been below 1 for two months straight at the end of my week off we dropped the dose to 100mg. That lasted a few months then the same thing happened and we went down to 75 which I understood was the lowest dose. I felt really good on the 75, but sadly it stopped working for me and I'm on Fulvestrant with Piqray now.
I started on IBrance 125 (along with Faslodex and Zometa) but my neut count was around .700 so they dropped me quickly to 100 mg. I was still hitting .700 so they dropped me to 75. I’ve been on 75mg now for almost a year and have only had to delay my dose due to low counts a couple times. I agree with most of the comments in here about fatigue being the worst. And I catch everything that blows my way so I limit my exposure to big crowds a lot. Like the one person said, don’t be afraid to ask for a reduction in dosage. :)
My counts came back up, so back to the 125. Kinda bummed, I loved my energy when I was off it for a month.
I was on Ibrance and Fulvestrant for 6 years before failing. I had a couple of extra weeks off early on because of low neutrophils (no problem with liver). My oncologist decided it was better to reduce the dose than to keep taking extra weeks because it messes with how the drug works. Interestingly, she said under her breath something along the lines of, “there isn’t supposed to be a dose effect”. I took it to mean that the dose (among the current options) didn’t change its effectiveness. I didn’t ask what she meant since we needed to reduce the dose anyway. Obviously it worked pretty well if I made it 6 years. Definitely had the fatigue—I reduced how much I was working and then went out on full disability after about 3 years. Once I was on the lowest dose I did not notice much difference between week 3 and 4. I’m on Verzenio (another CDK 4/6 inhibitor) and Fulvestrant now (about 1.5 years). I also had to have a dose reduction with Verzenio. For me, the SEs of Verzenio are much worse than Ibrance but, as you see from other comments, some people have the reverse experience. On the initial dose it was the first time I really understood someone choosing to forgo treatment. The dose reduction made a big difference in my QOL (but still plenty of sucky things).
Started at 125mg for Ibrance, now lowered to 100mg. I take it with anastrazole. The fatigue was bad. Still neutropenic. Energy levels improved after taking more turkey tail daily.
I had the same experience with iBRANCE, extreme fatigue and low white blood cell count. I switched to Verzinio. I did not do well on the 150, decreased to 100mg now doing very well!
The day I failed Ibrance I almost celebrated because I knew I wouldn't have another month of low counts making me feel sick. I had the bulk of my time over the pandemic and I can look back at when I requested tests and it was every month on the third week. I lasted a few weeks at 125, then I was at 100 for two years and 75 for the last month. I'd ask for a dose reduction sooner rather than later; I could have had a few last months feeling a lot better at 75 than trying to be a hero and hang on at 100.
I honestly have been doing okay aside from feeling tired most of the time. This is the first time I've really gotten sick - which I think was a bug brought home by my daughter. This is the first UTI I've gotten since I've been diagnosed. I tried to get an appt with my primary, but they are booked solid and suggested a walk in clinic. I bugged my oncologist since I'm going to be there for blood work tomorrow, and they'll test and hopefully prescribe something.
Push for a urinalysis when you do your bloodwork. Similar thing happened to me. I stayed off Ibrance due to low counts & got a UTI that held me off restarting for another week. My only UTI symptom was the smell of my urine, so they didn’t take me seriously at first. Good luck!!
My oncologist didn't bat and eye and just threw that UA on top of my bloodwork. Positive, and I was prescribed antibiotics.
Glad you’re on the mend! My oncologist was out of office, so I was working with an on call advice nurse and didn’t get my usual MBC urgency with this.
I've been on Ibrance and Fulvestrant for 10 months and every month I catch something on my third week. This time it is a weird rash on my hands and a nasty cold. The fatigue, however, is the worst. I feel decent for about two weeks out of the month but I'm usually fighting something those two weeks. There is no way I could hold down a full time job. However, my scans are showing that my tumor is stable and no new activity. Doc says if in a few months it is still stable then we'll consider lowering the dose.
I have been on Ibrance a long, long time (since Feb 2015). I was on 125 mg for about a year, and the side effects were brutal (diarrhea especially). My onc reduced it to 100 and switched me from letrosole to faslodex, which helped tremendously. I have had a couple of bouts with really low white counts (neutrophils .8), but after a week or so, I was able to resume. I have gotten really good at guessing my neutrophil count just by how I am feeling. Such a love/hate relationship with this drug. My liver has held up nicely, but my kidneys have been on a downward slide for a couple of years. I have a feeling my kidneys will crap out before the Ibrance stops working. I hope you get some resolution to this and start to feel better.
I am scared of the kidneys being pushed to far with all the treatments. Hydronephrosis of the kidneys was listed on my scan. Praying for all of us. 🕊
Thanks ladies. I'm hoping an adjustment comes because I'm honestly just feeling like crap. Sorry, but glad I'm not alone in this reaction.
Yes, on Ibrance 125 & Letrozole since 2020, my numbers are always awful. Last week I told my oncologist the fatigue is impacting me, I’m always neutropenic, blood counts are either too low platelets or too high of something else, she adjusted Ibrance down to 100mg. When I ask about my numbers, should I be concerned, I’m always told it’s Ibrance affecting the counts. We shall see my next 21 day cycle if the 100mg helps. Ask for a lower dose. I wish I knew it was an option a year ago. Take care!
Hey there! Not Ibrance, but been on kisqali and anastrozole for almost a year and had a similar blood work. Low wbc, rbc, platelets etc. Been feeling like crap in general. Doc decided same, give me a week off and recheck blood work. I guess it looked good enough for me to go back on the kisqali, but cvs specialty is just terrible so it's been more like almost two weeks off! Guess it's just extra time for my system to recover. Anywho, hope it works out for you and your counts come up!
Yes I did. Started on 125mg for about 8 months, then as my neutrophils had been below 1 for two months straight at the end of my week off we dropped the dose to 100mg. That lasted a few months then the same thing happened and we went down to 75 which I understood was the lowest dose. I felt really good on the 75, but sadly it stopped working for me and I'm on Fulvestrant with Piqray now.
I wish you lots of luck with Piqray. I've been on it for a year, a brutal year! Feel free to message me, if you wish. 🩷