My mom started Ibrance on Dec 13th. No major side effects these past couple weeks. She’s had a low blood count her entire life but never expected getting sick frequently or anything like that. Her blood count was 1.09 when she started Ibrance. Her oncologist started her on 75mg because of her natural low blood count so it was expected that it would go down. She had lab work yesterday and her blood count was 0.35. The nurse called today to inform her to stop taking Ibrance due to the low blood count. She will continue the letrozole and do labs again next Monday.
Has anyone experienced a blood count this low and if so, how was the Ibrance schedule adjusted? What is the next option after Ibrance if blood count never stays at 1 or higher? I am hoping she is able to get in a 3 weeks on/2 weeks off schedule.
Thank you 😊
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ntalley8
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My moms count isn’t naturally low but is quite slow to rebound from a series of Ibrance. Her onc put her on a three weeks on, two weeks off schedule. Definitely discuss with her onc. It will take a couple of months to figure out what works for her, but the schedule can be adjusted.
Hi there. I'm not sure my experience is helpful in this instance. I started Ibrance in September. I don't know what my count was before I took the first course but it had dropped below 1 before the second course so I was given another week off. The same thing happened at the end of that course. I spoke to my oncologist on the phone and asked if I would just have two weeks off as a matter of course but instead they've reduced the dose. This is where I'm different from your mum - I started on 125mg and reduced to 100mg.
I've not come across anyone on here who has such a low dose as your mum. Can I ask at which point the blood test is done? Here in UK we have it the day before due to restart the Ibrance- ie after a week off. If your mum is having test done sooner then how can they tell if she's recovered from it?
You bring up a great point. I also questioned why she would have lab work now instead of right after the off week in order to see how her counts look. They started her on the low dose because she just has a natural low count so they knew anything higher would be too much. I hope they just allow her to do 2 or 3 weeks on and 2 weeks off. I also hope the letrozole and Ibrance is effective to clear out her lymph node since there isn’t any additional spread at this time.
Hi! My absolute neutrophil counts normally hover in the 2-2.5 range so when I began Ibrance it was also a challenge. We spent over a year adjusting doses and schedules but my counts kept dropping lower and lower even with the lowest dose and a spread out dosing schedule. My onc finally suggested we not use it because the cancer I have is slow growing and the low blood counts were causing way too much stress and anxiety. She said that letrozole was the workhorse drug so it was quite reasonable to stop the Ibrance. I am not suggesting that for your mom, only sharing my experience with the drug. She is not alone in the low AN count issue, and her onc should have a good handle on what is best for her particular situation. I wish her well on this crazy journey.
Hi there! Did you have any issues with progression with the Ibrance adjustments? How has letrozole been working for you? Are you highly ER positive? Since her met is one lymph node, her oncologist said they aren’t able to tell us if her cancer is slow growing or not since a tumor isn’t present. Her oncologist thinks it’s slow growing because her recurrence has happened 20 years later but who knows.
Since the surgery I have not yet had another met that they can see in scans. And yes, tumor was around 95% ER+ 54% PR+, HR2-. Exactly the same as original tumor 20 years ago.
Wow that is interesting. Now that you mentioned that, her original tumor was ER+ PR + and HER2 -. This time she’s only ER+. I’m praying so hard her receptor status doesn’t change.
My blood counts came up significantly when I started taking a good multivitamin. Talk with her oncologist before doing so. Best wishes. Blessings, Hannah
Hi Sandra! This makes a lot of sense. We might need to get a new nurse because she specifically said neutrophils are white blood counts. She has labs next week so we will see how her count is by then. I’m glad to hear you’ve been on Ibrance for awhile. I pray you get MANY more years! This gives me hope. Thank you for explaining everything 😊
I've been on ibrance since March. It does throw my red blood count low, but my white count has been fine. So far it hasn't been too low, so I'm lucky. My neutrophils have been low, but not low enough to stop the ibrance.
That’s so good to hear. We just got started so I’m hoping things will level out and she can take it consistently. I hope you’re able to stay on Ibrance for as long as possible 😊
Check out Marrow Plus. It's an ancient Chinese concoction that stimulates WBC production. Recommended by my naturopathic doctor as an adjunct in integrated therapy.
I’ve had issues with neutrophils and recurring bouts of diverticulitis over the past 3 years. I started out on 125mg then quickly dropped to 100mg. My schedule has been adjusted a few times as well too. It was first 3 weeks on/1 week off, then 3 weeks on/2 weeks off.
I’ve now been on 2 weeks on/2 weeks off for over a year and it has helped both the neutrophil count as well as the recurring diverticulitis.
My oncologist says the same as what others have mentioned , the letrozole is the workhorse. I’ve even taken a break for 6 weeks from Ibrance but continued with the letrozole.
Did you experience any new mets while trying to figure out your Ibrance schedule and when you were off of it for 6 weeks? My mom only has one met which is her lymph node and she’s concerned about fast progression if there are issues with the Ibrance schedule. She is taking the letrozole so I am glad to hear it is powerful.
Always enjoy reading your posts and keeping up with your news too! Hope you’ve been feeling better these days. You must be missing the bike rides!!
I hope you are managing to keep warm, you guys are in a deep freeze!
We’ve had COVID in our home!! I will be on the cusp of the isolation period as I go tomorrow for my CT. My son got it from work and has been isolating while my husband, daughter and I have done the rapid tests every other day to ensure we were clear! My husband and I were triple vaccinated so we managed to avoid getting it. Our daughter must have a healthy immune system as she was only double vaccinated but also didn’t pick it up. So onward to CT tomorrow. Will do another rapid test before I go to make sure I don’t spread anything either.
Hi I have been on ibrance for the last 2years I have been lowered to 75mg for the last year as my blood was too low ..but still my bloods crash about every 3weeks ..it just delays treatment for a week ..but they are talking about having treatment every 3 weeks as you can't keep having low blood count this often ..75mg is the lowest dose . Does this mean the treatment is still working with this gap in treatment X
My mom just stated Ibrance Dec 13th and has been off since last Tuesday to help her blood counts come up. Her team is trying to figure out the appropriate schedule for her since she has a natural low blood count. Have you had an progression with your Ibrance schedule?
I started on the strongest dose of iBrance and struggled with my neutrophils until I am finally at a 75 mg dose and a 3 weeks on/ 2 weeks off schedule. I have read of a two weeks on / two weeks off schedule; also an every other day schedule, etc.; there are options. I have many fewer side effects now.
A later in the day test may help. I have my blood tested around 2 pm. I have read that some exercise will also help raise the counts— maybe your mom could try a stationary cycle before going on the appointment? And really important is to have the blood tested on the last day before you take it again — that way you have the maximum time for your blood to build up.
Given the rampant Covid, I'd suggest your mom stick to the house while sorting this out. I got my groceries delivered, curtailed outings, etc., while we sorted this out. Best of luck!
Hi there! How long have you been on Ibrance and letrozole? Have you had any progression so far? She normally works out in the morning and then goes for labs. I will mention to her doing labs in the afternoon to see if that changes. Are you saying she should take labs on the last day of the off week before starting the next cycle? They had her take labs two weeks into the first cycle and discovered her count was too low so that’s why she’s been off of it. She’s worried the letrozole isn’t enough so she’s eager to get back on the Ibrance. She’s still working but other than that, she stays home as much as possible.
Hi, I have been on Ibrance and letrozole since January 2021. I have had 2 scans, and my lesions are becoming lytic. So, no progression. I have lobular breast cancer, and we are watching a couple of masses in my uterus. Right now we are calling them fibroids.
Yes, try to get the blood tested as late as possible. My appointment is on Fridays. I get tested around 2 and if my neutrophils are ok (1 or higher), then I start iBrance that night.
Your mom had her blood tested when she was on iBrance. What is her blood count doing after 2 weeks off, like the 14th day?
That is such great news! I’m glad you aren’t having any progression.
My mom’s lymph node met tested positive for IDC which was the same as her original diagnosis in 2001. She started Ibrance on 12/13/2021. Her blood count after two weeks was 0.3 so her oncologist told her to stop taking Ibrance which was last Tuesday. She had labs yesterday and her count was 0.4. Her pharmacist reached out today and told her to take labs next week to see if her count will go up more. They are considering a 3 weeks on/2 weeks off schedule for her. Hopefully it is effective for a long time!
One month I went something like 19 days before my counts improved enough to go back on iBrance. The 3 on/ 2 off sounds like it may work well for your mom. Do not get discouraged! Frustrated, yes. Give it some time!
HiI had low neutrophils when I started taking ibrance (my onc would only continue if 0.8 or above). However, I’ve now been on 75mg 2 weeks on 2 weeks off for 1 year now and my neutrophils are good and I’ve stopped feeling so fatigued. I’ve also remained stable.
Hi there! This gives me so much hope. They want my moms neutrophils at at least 0.5 but I’m assuming they want it higher. Where are your Mets? As of now, my mom only has 1 lymph node met. Praying this break on Ibrance doesn’t create more progression for her.
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