Hello ladies! I’ve been following data trials for alternative dosing for IBrance in the effort to avoid the 2 week med vacation that I’ve been forced to take between IBrance cycles. My neutrophils were low with consistent ANC numbers below the acceptable baseline of 1.0. Low neutrophils meant extreme fatigue, and in some cases depression so I looked through this blog looking for posts that address this alternative schedule. About a month ago I posted a question about this problem…but it was two years ago that someone had posted that IBrance alternative dosing was in trials and we would have some results by 2022.
Apparently the alternative dosing is safe and does alleviate the problems with neutropenia.
This week is my first “trial” of the alternative dosing…I’ve taken it for 5work days and will be off for the weekend. On Monday I’ll resume the pills again. In three weeks. (After 28 days on their schedule) my ONC will look at the blood Labs to see how I, doing. If my numbers are good 🤞I will restart the 28 day cycle without a break (as per the study). If not then we will see if one week off will resolve the low numbers…as opposed to the 2 weeks I’ve been taking.
Why do this? Because I don’t like how I’m feeling around day 19 of the regular cycle…and I really don’t feel well for at least 5-6 days after I stop the Ibrance.
What the study was not able to prove is the long term efficacy of this type of dosing…in other words will it work similarly to keep the cancer under control? I guess I’m willing to take this option as I’m not keen on being without the IBrance for two whole weeks, and being sick/miserable for one of those five weeks. Last month I was so miserable I was asking to reduce the 100mg to 75mg. My ONC however preferred me to stay on 100mg…so here we are.
I’ll keep you guys updated on how this alternative dosing is working and if my neutrophils stay at acceptable levels…and if I feel better overall throughout the cycle.
Life’s a crapshoot. Hope this turns out well and gives some of you an opportunity to feel better as well 🥰
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Dragonfly2
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Hi Dragonfly, thank you for sharing this information. I am on 100mg and on my 6th cycle and have felt exhausted. My neutrophils were just below 1 when I was due to start my new cycle but I started and have felt so weak and tired. To the point I just stopped taking them and will start again when my new cycle is due. I am going to talk to doctors at clinic about your 5 day on two day off approach because like you I feel so rough in the break. Keep us posted and best wishes.
I’m so glad this info may be helpful to you! My ONC is very clear about not resuming the meds unless my ANC numbers are above 1.0. Please do have that conversation…low neutrophils leave vulnerable…and fatigued! Yiu did the right thing about stopping 🥰
I will hopefully be starting ibrance in a couple of weeks and I’ve had issues with low white counts both while I was having chemo and while I tried kisqali, so I expect the same when I start this new drug.
Thanks for sharing this information. It’s good to know that options are being researched.
I’ve just switched to the 5 day on 2 day off schedule of Ibrance. Take the lowest dose as I can’t tolerate any more, and my ANC is always below 1 and has lately been hovering at .7 with some heavy fatigue hence the change in dose schedule. Taking an extra week off to recover does not seem to make any difference. I’m just 9 months into Ibrance with Letrozole and find that the emotional upheaval during the week off is the hardest part so I’m hoping the steady dose schedule evens things out and helps prevent the ANC from dipping so low. I teach middle school and am nervous about returning Monday with no masks required, but onc says to continue even with a low ANC as long as I’m not getting lots of infections. These are hard choices, I wish we had some better cards to choose from.
I was a middle school reading teacher, too! I thought about subbing but didn’t dare go in without masked kids. So I do feel your worry…I’m so sorry you have this extra concern. Taking two days off sounds ideal for you…”The mean half-life of palbociclib is 29 (+/- 5) hours (30), ribociclib is 32 hours (31) and abemaciclib is18.Jun 10, 2021”. This means you still have some IBrance in your body on Monday…and then you build up again for the next 5 days. This sounds so reasonable for someone who is sensitive to the med like you. I hope this helps you and keeps you well!
Your Oncologist is right about not starting until your neutrophils are up again but he wrong in not agreeing to the lower dosage. It is just as effective. That has been proven. He can check with Phizer. I wanted to switch to an alterantive dosage and was denied by by oncologist. I regret this decision even today. Be adamant and get a second opinion if necessary.
Thank you for the encouragement…you are so right about speaking up for yourself! I’ll be sure to share how this new schedule works out for me and for others who need this kind of change.
I truly hope this new protocol will work for you and get you back on track. To me it makes sense to do the dosing this way and it would keep the Ibrance in your system more consistently than taking a week or 2 off, as long as the neutrophils can remain stable. Please keep us posted. Sending you hugs and prayers.
I hope so too! I have always told my oncologist that my quality of life is of utmost importance to me. I never understood how they could give everyone the same Ibrance dose when we all weigh different amounts. I asked my doctor about that and she said well that is the dose and dosing schedule that is recommended and was tested.
I too looked at the alternate 5 on 2 off schedule, but ended up dropping Ibrance altogether. I have been studying the articles and research done by the group called The Right Dose. Most of our drugs are not trialed at lower doses--but one "maximum tolerated dose." The oncology world seems to think more is better--but this group points out that is not the case. They are concerned that patients also think more is better. The FDA is involved with this now too. At least they have trialed various doses of Ibrance. The lower doses of Ibrance are just as effective. Calculate how much you are taking in a month--via the 3 week on and one off vs, the 5 day on 2 off. I don't want to sit here and do the math--but I did calculate the various regimens when I was on it--for example the 2 weeks on and one off cycles vs the regular. I bet the 5 day on and 2 off is almost the same amount going in to your body. That should give you some peace of mind. Best to you! Kay Check out therightdose.org
Thank you for your encouragement and shedding more light on the dosages of Ibrance...I too feel that there is no value in maiming the patient when killing the cancer...its a marathon at this point so we must pace ourselves. As for the math on the 5/2 schedule: in a 28 day standard cycle you end up taking 21 pills, right? In the 5/2 schedule you use 20 pills..though you can incorporate them either in the next cycle or just discard them (feels so wasteful!) ...but the point is you keep a more even amount of meds in your body...oh well, we shall see if I can tolerate even this...stay tuned! Thank you again!
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