Ibrance Dosages: I Need Your Feedback

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Tina2
Tina2 Member Posts: 2,943

Have you reduced the original dosage since you started taking Ibrance? From what to what? And why?

I'm at the end of my 5th Ibrance cycle on125 mg. and have had several truly miserable weeks. Need your input, please.

Tina

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  • Simone80
    Simone80 Member Posts: 988
    edited August 2020

    I was reduced to 100 mg after about 17 cycles due to low wbc. It has made a big difference. My MO told me there has been studies that 100 works just as good as 125 mg. You may want to ask your MO about that.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited August 2020

    I've been on it about a year at 125. Each month seems to bring a different se, but then goes away. Except for the constant low grade nausea. I can't eat, don't want to eat. Not vomiting. Just yucky. On week off, all good.

    MO says my counts are always low, but he's not concerned. So when I see him next, I'll mention the nausea, he may drop it. We'll see.

    Some on ibrance are on 75 and doing well too.

    Check out the ibrance thread too.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2020

    MO reduced me right away after the first month due to a) low bloods (not THAT low - .9) and I was complaining about 'deep bone cold'. So much so that they tested my thyroid. When that came back fine it was straight to 100 where I have been since. I did a low blood number in May I think, which was a surprise, but that was the only month - bloods have since come back great. No more bone cold.

    I had a bit of a problem with mouth sores, but the peroxyl sorted those until I realized what I really needed to be doing was drinking a ton more water. I get fatigue usually on day 13-17 (not all those days, just in that range), and sometimes I get light nausea mid month as well. Sometimes Big D at the start of the month - but this month I think that was more due to a combo of the zoladex injection and lentil bolognese :)


  • Tina2
    Tina2 Member Posts: 2,943
    edited August 2020

    Thank you, Spookiesmom and Simon80.

    Yes, I will discuss my problems with my oncologist Monday. And yes, I've checked the Ibrance thread, but as you know, it is huge, and I'd like to get just these data points from anyone who will kindly provide them.

    Tina

  • KBL
    KBL Member Posts: 2,521
    edited August 2020

    I was on 125 for one cycle. My ANC did not recover well at all. They put me straight down to 75, and I still have ANC issue sometimes, but they've allowed me to continue. I just finished my 14th cycle. I was extremely fatigued on 125, but I just need a short nap usually daily on 75. It's definitely better for me.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2020

    I reduced from 125 to 100 after a couple cycles because of mouth sores. I was on 100 for quite a while, then went to 75 because of fatigue. I got my two years out of it. I did the usual schedule. I am a person who typically needs a lower-than-average dose of anything.

    I did worry that going to 75 shortened the time the drugs were effective, but my genomic testing revealed that a mutation had developed that would cause resistance.

  • Lee64
    Lee64 Member Posts: 184
    edited August 2020

    Hi, Tina

    I started on 125mg. and didn't make it through the whole cycle because my counts were so low. Next cycle started on 100mg. but counts were too low at the end of cycle. Now I am on 75mg. and doing fine. I started my 9th cycle on Aug. 21 after having to take an extra week off because of low counts. That's the first time that has happened on 75mg. and I hope it was just a fluke. I have very few side-effects and I hope I can continue on this drug for a long time.

    Good luck!

  • Chico
    Chico Member Posts: 196
    edited August 2020

    Hello Tina I have been on Ibrance & Letrozole for almost 4 years. I requested to drop down to 100mg a few months in although my bloods were mainly ok. The 3 Onc’s involved in my case at the time all agreed that this should really be the starting dose for most people. I strongly feel that weight, age etc etc have an influence on the dosage and dosing of these meds. In other words a high enough dose to work but not to floor us and cause us to keep taking breaks. Good luck to you & I do hope that Ibrance works for you. It has se’s but I really don’t want to change to anything else - except one day to immunotherapy 🤞

  • Tina2
    Tina2 Member Posts: 2,943
    edited August 2020

    Thanks, all who are participating in my informal dosage survey. I appreciate your help more than I can express.

    This morning I opened this thread to find several new posts, only to discover they had disappeared when I returned later for a less-hurried reading.

    Have any of you posted here, then deleted or substantially edited? I don't I actually think I'm losing it it, but then people who are never do, do they?

    Again, thanks. It is good to know you are out there.

    Tina


  • Tina2
    Tina2 Member Posts: 2,943
    edited September 2020

    Did anyone get the number of that 18-wheeler?

    After a debilitating fifth cycle of 125 mg Ibrance and then a two-week break, I'm starting on 100 mg today.

    Tina



  • Snow-drop
    Snow-drop Member Posts: 514
    edited September 2020

    good to get quick response to your questions Tina. I too moved to 100 because side effects were getting worse, I had shortness of breath, sharp pain in chest, and absolutely low oxygen in my blood, of course it is because of low rbc. Fatigue also was a big problem. Funny I did mentioned those to my MO but he didn’t say a word that they were se of ibrance, those times I did not check this forum quite frequently. Once I saw a post that someone reduced the dosage to 100!!!!! I said oh this can be happening..... I feel better with lower dosage now. I hope you do too.

  • Bestbird
    Bestbird Member Posts: 2,818
    edited September 2020

    You're "talking the Patient-Centered Dosing Initiative's language!"

    The PCDI believes that patients and their physicians should discuss available dosing options (except for endocrine therapies, which have only 1 dose) when patients start a new drug or have treatment-related side effects on the starting (maximum tolerated) dose.

    Here are some studies regarding Ibrance:

    A Phase II study that randomized 72 HR+ HER2- MBC patients to receive Ibrance in either a 125 mg or 100 mg dose in combination with physician's choice of fulvestrant or tamoxifen concluded that the 100 mg dose was associated with a lower rate of grade 3 or 4 neutropenia. Furthermore, both Progression Free Survival and clinical benefit were the same in both groups. Dr Hope Rugo was the lead investigator. https://www.targetedonc.com/news/reduced-palbociclib-dose-associated-with-lower-rate-of-neutropenia-in-hr-metastatic-breast-cancer

    In a slide entitled, "PALOMA-3: Effect on PFS of Dose Reductions due to Neutropenia" presented by Dr. Sara Hurvitz at Clinical Care Options Oncology on June 18, 2020, it was reported that the PFS observed between patients who had ≥ 1 Ibrance dose reduction vs. no dose reduction due to neutropenia was identical at 9.5 months.

  • Tina2
    Tina2 Member Posts: 2,943
    edited September 2020

    Best Bird,

    How fortuitous! I just ordered the latest edition of your book yesterday. I had been. a charter fan and remembered that you might give me some insight into how recent progression of long-extant lung mets could make me feel as if I had walked off a cliff. I think I read the information above in one of your latest PDFs.

    I will pm you.

    Tina

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