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Not sure about next step

Sundance4 profile image
12 Replies

Hi! This is my first post. I’m so glad I found this site. Everyone is so upbeat. It’s nice to know so much support is out there! Thank you!

I was diagnosed with mbc in September of 2019. I started IBrance and Anastrozole in November. The first month I was on 125 mg of IBrance. I felt great, but neutrophils were too low to finish cycle. I completed 2 cycles of 100mg. In the second month, I had low neutrophils again. Onc planned on having me continue with a 75 dose but my PET and CT showed some “healed” areas and some new growth. Blood markers are also up from first month of treatment. I’d like to try a 125 dose again, since blood markers really went down that month and scans showed some areas of improvement. Waiting for call from oncologist to see what her plan is. Anyone try a 5 on 2 off schedule? Not sure what next step is...anyone experience this?

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Sundance4
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12 Replies
Kiera49 profile image
Kiera49

I've been on ibrance 125 mg for 1 year now seems to be working. I haven't tried any other schedule than 3 on 1 week off. I wish you all the best. Tracey

Sundance4 profile image
Sundance4 in reply to Kiera49

Thank you!

Annadm profile image
Annadm in reply to Kiera49

Hi Tracey, are you also on Letrozole? I started Ibrance 125/Letrozole in December 2019. I feel so weak, tired, I have no energy to do anything. You dint feel like this? Thanks Anna

Kiera49 profile image
Kiera49 in reply to Annadm

Yes I am on Lerozole sometimes feel tired and arms ache and ankles but they are ok when I'm up and about, I have bought an exercise ball and dumbbells to make muscles stronger. All the best to you Tracey

Red1246 profile image
Red1246

I've been on Ibrance 100 mg and Letrozole since September 2019. After first cycle I went to 100 from 125 given low wbc count. This is quite usual I have found out from others on this site.

While I take the pill for 21 days and, depending on how quickly my wb cells improve, have a week - 3 off Ibrance. I've read different variations to the cycle: some take Ibrance for 2 days and then stop for 2 etc. Others one week on/one week off. It's trial and error it seems and I'd discuss with your oncologist. I do know that we all metabalize Ibrance differently and all strengths are supposed to be equally beneficial.

Hope this helps somewhat.

All best,

Red

Sundance4 profile image
Sundance4 in reply to Red1246

Thank you for the info!

mariootsi profile image
mariootsi

I've had trouble with low plateletes. I'm on 3weeks on, 2 weeks off.

I believe there is room for the oncs to have flexibility in our dosing schedule and I believe I have seen posts here from women on the 5 and 2 schedule.

I hope you find the right combo for you.

Sundance4 profile image
Sundance4 in reply to mariootsi

Thank you!

hdhonda profile image
hdhonda

Sundance, welcome to the board. I go to a local oncologist and one at a major cancer center. Neither recommended alternative dosing. I do know that some oncologist are ok with it. Best wishes. Blessings, Hannah

Sundance4 profile image
Sundance4 in reply to hdhonda

Thanks for the response! I finally talked to my oncologist about different dosing, and she said she was uncomfortable with changing dosage unless I was in a clinical trial. My onc is from a large university hospital and is very data driven. I have faith in her. When I was first diagnosed she responded to a question I sent her through MyChart at midnight! I loved that she was looking at my info at midnight! What dedication!

Welcome to this awesome group. After two years of low neutrophils and being three on three of my oncologist has decided to try week on week off. At the end of six weeks it’s the same amount of Ibrance but it’s kept at a steadier level and my neutrophils have stayed up the whole time. I’m due for my next scan in March so that will tell the tale. I have had stable scans with one new met to my skull over the two years. Last scan said progression but the radiation oncologist did not see any progression in my spine. He did one dose of radiation just to be safe.

Sundance4 profile image
Sundance4 in reply to

Thanks for responding Sarcie. I have to remember this is a marathon, not a sprint. Time will tell what the best recipe is. Prayers for good scan results in March for you!!

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