Does anyone know if you can go back to the Pfizer original 7/1 schedule, if you try a modified schedule of 5/2 to see if it will improve my counts. My oncologist now does not agree with me changing the schedule as I originally suggested to her. I have a feeling this was discussed with her peers and consensus is to stick to what they know about Ibrance.
Your input and thoughts are important.
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I have done this twice without my onc knowing and did fine when I felt like I needed a break but I still took full Amt the off 2 weeks-it didn’t effect- my markers went down and I felt better wbc were up and rbc. I don’t know how it would be if I continued that . I am on my 6th cycle..it would be good to hear others that are on the 5/2 schedule.
Me too!! I wish we had a personal meeting and get together to talk this over!
I'm not sure I understand your question. The instructions for Ibrance are 21 days on, 7 days off giving your body time to get your neutrophils up - at least that's the way my onc. explained it to me. My first few months on Ibrance, I had to take an extra week off for my numbers to rebound. Then I read about the 5/2, 5/2, 5/2, 6/1 schedule. Since going on that schedule, my neutrophils have been in the low, but normal range.
I'm not sure what the 7/1 schedule is. Ultimately, I think it's our choice how/what/when to take our meds. I think as long as you're taking 21 pills in a 28-day period, you should be fine. From what I've read, it's better to take it more consistently over a 28-day period with fewer long breaks. My onc. is open to my thoughts about my disease; I'm the one with cancer, not her, and I think I have the right to change the dosing schedule if I want to.
Thanks Southside 25! My mistake... I mistyped...it's 3/1 not 7/1 
The phase II clinical trial on the 5/2, 5/2, 5/2, 6/1 schedule must have some merits to it, otherwise it wouldn't happen. The text in the trial states the reasons for the trial is that a "significant" number of patients develop severe neutropenia. I totally agree with you; I'm the one with cancer,trying out this drug, which seems to be very effective, yet the dosing schedule is not carved in stone yet. Ibrance received accelerated approval and we don't have widespread results yet. My thinking is I want to give the 5/2 a try but wonder if I can go back to the 3/1 if the 5/2 schedule proves to give too much continuous chemo to my body.
What Clinical Trial are you on, and is it open?
It is a clinical trial testing a 5/2, 5/2, 5/2, 6/1 schedule I stead of the 3/1 schedule . I am not in it, but am contemplating the schedule myself. Here's a link to that trial.
clinicaltrials.gov/ct2/show...
Thank you for the information.
But don't you think the oncos have more information, medical expertise and experience from dealing with other patients with Ibrance? I know some people who started on 21 days on and 7 days off were able to get their oncos to try a different schedule but if we go to oncos for their medical knowledge and experience, I think we should see what they say. They dose it according to the pharmaceutical company's research and advice. Maybe it is more effective that way. It is what the pharmaceutical companies recommend when first starting a patient on Ibrance. I go to my onco and I listen to what she says and don't make my own decisions about when I will take my med if the rx instructions are listed another way. Otherwise, why would I waste my time going to the onco. If I have an issue though, I will let her know. But when on Verzenio (after Ibrance), the 150 mgs. were awful and I told her I could not handle that, she lowered me to 100 mgs. (twice a day with no break) and I still had awful side effects and told her that. So I am now on 50 mgs. twice per day and feel almost normal. Maybe taking a higher dosage is better but not if I have no quality of life. Maybe some people, depending on where it spread, are able to dose differently.
The science may still be out on truly most effective dosing. If Pfizer hasn’t done a study on it, then docs might not be willing to mess with what was done In the trials. I just talked with a friend who is an MD PhD who worked on the trials early on. They were trying 2 on 2 off and other mixes, including 3 weeks on, 1 off. Clearly they settled on 3 and 1. But who really knows what’s best. It’s all an experiment! But I’m leery of the suggestion that we, as patients, know best. It’s a science....but on the other hand, no one really knows what’s best for each of us! It would be interesting to get a blood count at the end of each week (and not just right before the next dose) to see how your body is responding over time. I just had a test at two weeks into the 21 days (before a zometa infusion) and my counts were as good as after 4 weeks. So maybe I don’t need the break!!
I agree with you
That’s what the trials were all about...to find the most effective dosage routine
I’ll stick to 3 weeks on and one week off..I’ve had to have a couple of iron infusions for anaemia but otherwise coping
Barb xx
Thanks Buffwright for your answer. You're absolutely right that oncology has to go with the science established by Pfizer. And I can appreciate that fully. I don't profess to know better than the scientists. The accelerated approval of Ibrance shows that one, it works and two, they were not 100% sure about a best dosing schedule. Why was the 5/2 schedule not tested? This new trial tests if frequent short breaks to the bone marrow prevents neutropenia, plus the Rb phorylation (tumor growth) is suppressed. Makes perfect sense to me. The ambivalence of my onc (who I greatly respect) tells me they don't know either.
I agree. We do not have the medical knowledge or experience to decide certain matters. That is why we go to an oncologist. Research was done before these drugs are released so they prescribed based on that. Having cancer does not give me the expertise to know how I think the dosing should be. But if a patient wants to try something different and if the onco is willing, then that is another thing.
Hi, ! Have just had my dose of palbociclib (ibrance) reduced to 100. This is because my neutrophils are consistently too low for safety from infection. I mentioned 5/2 etc regime and he said the UK under NICE is only licensed for the 21/7 system. So lowering the dose is the only option! If you come off ibrance all together it can be because it is too toxic for your system rather than not working. All a bit worrying isn't it especially as I would have thought chemo is even more toxic. Fay
Thank you Ritagirl! Great to discuss also how England is handling Ibrance dosing. And you're right....one if my concerns with a 5/2 dosing schedule would be the continuous supply of chemo to my body. We have to choose the least of all evils!
My Oncologist said to go to a 7/7 schedule this round of Ibrance 100mg and if that is still to harsh, 5/2. Last 21/7 round, day 10 was "crash" day. Hearing allot of good things about the 5/2. This round at 7/7, day 5 was crash day, it hit HARD!
Thanks Syrvivornow! It still is a trial and error process isn't it! I'm on the 100mg and last week, my whole off week, I crashed. That's why I'm trying to find a better way of administrating this proven to be successful chemo pill.
The Ibrance was too much for me. My week off was horrible. I was only on for three cycles. But the women I know that have been on it for three years or more are all on the 125 mgs., 21 days on and 7 days off. But everybody has different reactions. The lady told me she felt the same way during her off weeks as she did when taking it. I did not have that happen. I would have liked to stay on it longer since for alot of women, they have a longer progression free period. Now on Verzenio, along with falsodex, and according to research it's 16 months before progression. A big difference.
Dear Spiffy
My schedule is now 3 weeks of taking Ibrance and 3 weeks off. This is because the 3 weeks on and one week off schedule was raising my ALT liver enzymes, This happened over 3 schedules. It now seems that with a reduced dose of Ibrance [75 mgs] and the above schedule that the problem has settled. However, I have only completed two schedules on this routine, I'm now just finishing the third and I feel great. My WBC has remained normal throughout.
Good luck with sorting your problem
Wagdogchop
Thanks Wagdogchop (love that name )
The liver is another concern as well. Thanks for bringing that up. I'm glad you have found a good option for you in 75mg! I cannot wait to see definite results by Pfizer on Ibrance dosing. Let's all hang in there till they come out with those results.
When I started Ibrance, a nurse from Pfizer was calling me every month to see how I was handling it and what side effects I was having. I was told she would be tracking me for a year (as they did with many new patients). I only lasted three cycles though. Did someone call you from Pfizer when you first started. The nurse would make some suggestions if I had certain side effects but she always stated Do not do so without speaking with your doctor first.
So many individual variables with each patient. I believe any standard treatment set is open to flexibility in terms of dosage and timing.
But I would only switch with my oncs blessing. As I've said I'm 3 weeks on 2 weeks off. Just had bloodwork yesterday and platelets were good! Yay! Onc is pleased. Scan at end of June so we shall see what happens!
We can only really hope for the best.
Excellent results for you!! Congratulations and then no need to change anything, I agree. If it works for you that's great! I emailed Pfizer to ask if they tried the alternate 5/2 schedule during initial trials. So I hope they respond and if they do I will post it here.
My source says they initially tried 2 weeks on and 2 off as well as
3/1... Maybe at least a full week off is preferable for more complete rebounding, making 5/2 less efficacious.
I will be traveling this summer and need to figure out how to get 10 capsules early...or take a 2 week break. I’ve been on this for 3 years. I’m reluctant to take a chance! But this thread has me thinking. I’ll talk to my doc.
Buffwright, I just got off the phone with Pfizer. Talked to two departments. I asked if they did a 5/2 dosing schedule during initial trials. They couldn't answer that question. Your source information is great to have. Thank you!
I will be traveling in a couple months as well, but my oncologist already told me she'll make sure I have enough pills to take and she could also arrange for a lab to take my blood test.
I also asked Pfizer if results will be posted soon, the answer was that that's up to the FDA! Till then it's still an investigational med.
As bad as it may make you feel or the affects on your blood counts the doctors prescribe by the dosage that works the best. I would not alter how I took it. They are the specialists and some things we read aren’t what we think as it is usually in doctor speak.
I just got off the phone with Pfizer (who had more questions for me than I had for them). They leave the dosing totally up to the prescribing oncologist.
Ibrance/ letrozole schedule change
Mom’s MBC Diagnosis - Ibrance & Low Neutrophils 
Alternative Ibrance schedule 
