Alternative Ibrance schedule

[Mypathforward]

I am curious about various alternative schedules to Ibrance. I was doing 100 mg. 3 weeks on, 1 week off and found my 3rd and 4th week to be extremely difficult to get through with intense fatigue. I decided to try 5 days on, 2 days off and I am not experiencing extreme fatigue or low white blood counts. At first my oncologist was not on board but now.......my cancer is not progressing, my fatigue is still there but not debilitating like before, and my blood work is not showing adverse effects.....he is a believer. We all are not able to do the typical dosing. I take anastrozole daily.Wishing you all wellness.

[Nocillo]

I take it for 3 weeks on and 2 weeks off. It’s been working well. Knock on wood!

[13plus in reply to Nocillo]

That's the schedule I was on for 3 years at 75 mg

[Godbeforme]

I'm doing the 5/2 as well and so far so good. When I get tired I have found that an iron tablet perks me right up as I think my tiredness is caused by anemia, I've had that here and there throughout my life. I am having to take more medicine for blood pressure though as the ibrance has raised my bp. I took it for a few months a few years back and I had chest pains, I'll bet that's what happened, but I was stupid and instead of going back to the dr. and adjusting bp meds I just stopped the ibrance. My doctor told me several of her patients had their blood pressure go up on ibrance. Hope this tidbit helps someone somehow; wish they'd come on with the final report on the 5/2 study that ended 12/31/22; anyone heard anything about that? Edit: 2/5/23 I think it might be the letrozole raising my bp, I quit taking it in the morning with my bp meds and take later in the day, midway between morning meds and ibrance, it's a work in progress!)

[13plus in reply to Godbeforme]

Which study? Very interested to read it too. Do you know who was doing it? Or what the name of the study was called?

[Godbeforme in reply to 13plus]

took me a while to find it, I searched and searched on here, my email, etc. grrrrrrr ... finally found it under "my favorities" lol ... I KNEW I had saved it! WINNER WINNER chicken dinner! the 1st study completed in 2021 I believe, the 2nd study completed in 12/31/22 but results not out yet. I am on this 5/2 dosage and doing well on it. God bless you and heal us all in Jesus name, amen! clinicaltrials.gov/ct2/show...

[13plus in reply to Godbeforme]

haha, “your favorites”, go figure! I do the same kind of thing all the time!

Thanks so much for going to all that effort to find it though. I’ll take a read and look forward to seeing those results when they come out

[13plus in reply to Godbeforme]

I dug deeper into the links of the study link you shared above. And found more details. I’m going to share it in a whole new post for everyone a bit later but the gist of it was that the 5 on /2 off dosing was overall successful (potentially even more effective without such a long break compared to the 21 on /7 off protocol!

[Godbeforme in reply to 13plus]

oh thanks for that! I read the 1st study and couldn't really make heads or tails of it but some friends on here were successful with it and one of them being in the nursing profession so I was ready to jump on the bandwagon! when I mentioned to my onc his head was about to explode so I backed off as I don't have to argue with him, I will do what I feel is right for my body and follow Jesus' peace He left here with us! <3

[Raisinmama]

I made exactly the same switch and for the same reason. The 5/2 schedule was much more forgiving. Sadly, Ibrance didn’t work for me, so I am on to a new combo. My onc is now a believer in the 5/2 alternative.

[13plus in reply to Raisinmama]

May I ask where you're being treated?

[Mypathforward in reply to 13plus]

In Michigan.

[oilermama]

if that is working for you, go for it! I am glad that your doctor is willing to listen to you and how your body is managing the meds. Ibrance is hard on our bodies and adaptability is good. Keep us posted on how you are doing, please.

[Mypathforward in reply to oilermama]

Yes, it's working pretty darn well. Just started 5th cycle on Monday. My tumor markers are great. Only issues with blood work are my liver enzymes which are not unusual for me. Not enough to stop Ibrance. My oncologist said there is no research to support this approach and I volunteered to be his lab rat! I felt my quality of life was at 50%, why wouldn't I try to obtain better??? Am I 100%? No, not close but we all know MBC is a tough battle and we fight to get more time.....hopefully quality time!

I believe we need to try what works for us......not all our attempts are successful. I quit all MBC meds for 3 months in 21 as I had no progression and felt meds were worse than the disease......live and learn! CTs showed progression in lungs so I immediately went back on Ibrance and anastrozole and I am doing well. I was originally diagnosed with BC in 2003 and was diagnosed with MBC in 2019. I consider myself blessed.

Best to you all, Patti

[mariootsi]

My Ibrance schedule is 3 weeks on, 2 weeks off. I spoke with my onc about the 5/2 dosing and she would like to keep me on my present schedule even though I have low platelets from the Ibrance.

[Southside25]

I had problems on 21/7 schedule (thrush and low neutrophils) and had to talk my onc into letting me try the 5/2 schedule. Like others said here, much easier on my system, thrush went away and neutrophils came up to standard levels. I had already been reduced from 150 to 75 before I went to 5/2.

mariootsi, I'd keep pushing your doctor to let you try a 5/2 schedule. My argument was "if it doesn't work, you can put me back on 21/7". I was on this schedule for almost 3 years before the Ibrance stopped working.

[13plus in reply to Southside25]

You were on the 5/2 schedule for 3 years? I was on the 21 on/2 weeks off for 3 years and that was fine for me but really interesting to hear of this new dosing approach. It actually makes much more sense so it's great to hear that that kept you going for so long

[13plus in reply to Southside25]

Which State are you being treated?

[Southside25 in reply to 13plus]

Illinois, Chicago specifically

[Ppppopp]

Hi there, I have been on 125mg of I dance for 4 and a half years and definitely struggled at the beginning with being tired, now my body is use to it.

For the first 3/4 cycles my white blood cells were low and I was always scared I would not be given it.

Now 4.5 years on it’s just like clockwork!

Hope things get better for you soon!xx

[oilermama]

I know all about low blood counts and high liver enzymes... I just figure it is what it is, which may not be the best attitude but I am not willing to fuss with those pieces of information. I am five years into this and just glad to still be here.

SG

[Epinto]

Hi. In may of this year it will make seven years I am on ibrance 125mg . I have been on the same schedule 21 days on and one week off . I’ll do whatever helps and if your schedule works and is ok with your doctor, go for it!!!!

[Bettybuckets in reply to Epinto]

wow! Do you know of any thrivers who went on Ibrance and then it stopped working… went on something else for a while and then back onto Ibrance? I have heard that might be a thing…

[Mypathforward in reply to Epinto]

So happy to hear 7 years! That's awesome and while it isn't how we would have chosen our journey....we are warriors and deserve as much time as we can muster.....no matter our method! My best to you!

[13plus in reply to Epinto]

That is an incredible run on the one drug! ❤️

[bu9418]

My wife, diagnosed in 2020 with stage 4 metastatic breast cancer with bone mets used Ibrance from October 2020 - March 2022. She started on 125, then 100 then 75. the belief is that it caused her anemia. She spent a week in intensive care the last week of April 2022due to anemia. Her gastrologist believes that it was caused by the iBrance. But. let me give you the whole story. The combination of Letrozole and iBrance dissolved her breast tumors completely. Her March 2021 scans reported "It is as if the tumor was surgically removed" So it did work for her, until it didn't a bone marrow biopsy revealed complete replacement of the bone marrow with breast cancer cells. She went on taxol, had two adverse reactions, and was switched to docetaxol. Six months of weekly aggressive chemo. In November she finished up chemo. In december, around Christmas she felt lump(s) in her breast again. biospsy revealed at least 7 identifiable tumors, one at least 6cm. Next week, she is starting on ENHERTU. This is the next miracle drug. I pray it works. I pray for you too.

[13plus in reply to bu9418]

That initial breast cancer resolved story is interesting! I'm so sorry though that it didn't stay that way for her. Was it the doxetacol that she took fo r6 months? Aggressive chemo is very hard to tolerate Wishing your wife all the best with the enhertu. Did they ever do a detailed genetic breakdown of the latest biopsy to see if the cancer type has changed?

[Lynn-in-California]

No special schedule for me. I am on 125 mg. of Ibrance plus 2.5 mg. of Letrozole, and I've remained stable for over seven and a half years.

[13plus in reply to Lynn-in-California]

Amazing run!

[13plus]

That's fantastic that you found a dosing schedule that works better for you. I'm curious how long you've been on Ibrance, and how long you were on the initial dosing before you switched to the 5/2?

I took ibrance for almost 3 years on 21 days on/2 weeks off, which worked well for me but recently I started a trial taking Ibrance as part of the protocol again. I just asked the doc the other day if they ever considered the 5/2 schedule if my neutrophils can't tolerate what they're aiming for, 21 days on/ 7 days off. They apparently also prefer to do 21 days on/2weeks off instead (Upenn) if they have to. Seeing as I'm on a trial I can't just do my own thing but I got the feeling that they haven't ever tried that 5/2 dosing yet probably because it hasn't been studied.

I find it disappointing that more oncologists don't feel comfortable to experiment a bit if it really isn't working for the patient on the regular dosing! It's not like you're taking extra medication and really the dosing seems to make so much more sense for those whose neutrophils keep dropping too low (why risk pushing our systems to the limit continuously?) or, like you, the extreme fatigue just ruins your quality of life. Good for you for challenging the stars quo and having success with it! 🙌

[TexasLady2]

I have taken Ibrance 3 weeks on and 2 weeks off for three of the 7 years I have been on it and still the CT's show "No evidence of metastatic breast disease."