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Ibrance

I have been taken Ibrance with AI for over 2 years. I have bone only Mets when I first diagnosed as MBC. Ibrance worked very well in the first year and second and brought my CEA to 1-2 range. Since early this year, my CEA went up to 3, 4, and 5. My CEA lab yesterday is 7 and CA15-3 is 37. My CT/bone scan shows no changes on June 27. Is there anyone in the forum as similar experience? Does it mean Ibrance stops working for me?

Comments

  • olma61
    olma61 Member Posts: 1,016
    edited July 2023

    I am not on Ibrance because I’m her2 positive but I am bone only and my CA 15 3 has been in that 35 TO 39 range on and off since 2019. Funny that when I was diagnosed metastatic from the beginning, with actively growing tumors, both my CEA and my C15-3 were in a normal range.

    But anyway, my CA15 3 being slightly elevated, has not been a reason to change my treatment. Scans are always going to matter much more than tumor marker tests when it comes to determining your treatment. 37 is not really high, even though it’s a little bit elevated and I am still considered stable or NEAD

  • Bluesea20
    Bluesea20 Member Posts: 12

    Thanks your comments @olma 61. Did your CA15-3 elevate after treatment? My CEA and CA15-3 is steady going up since this year. They are double from 8 mos ago. That worries me. Does it mean something is changing and growing but not enough to show in scan? My oncologist always prefers to do CT/bone scan. Is it needed to do PET scan? I will do CT scan again in 2 mos.

  • olma61
    olma61 Member Posts: 1,016
    edited July 2023

    yes, I started seeing the higher CA 15-3 numbers after being on Herceptin, Perjeta and Anastrozole for 2 years and right after my radiation treatment to the spine. For awhile I was seeing an onc who used CA 27-29 instead of 15-3 testing, and I had only one 27.29 that was slightly above normal, it came right back down on the next test.

    Recently resumed with the CA 15-3 tests and they are consistently in that 35 to 39 range again. But I dont worry about it because tumor marker tests are known to be Inaccurate for some people and a Result in the 30s is not alarmingly high.

    These tests cannot be used to diagnose cancer, they only give an oncologist some insight when working with a patient already known to have cancer. And I dont think doctors worry very much until the TMs surpass 100.

    As for PET vs CT I prefer getting PET for bone mets because in the beginning I read my insurer’s manual to discover which forms of advanced imaging would be covered - and even they said PET would be preferred for bone mets! I think they give a fuller picture for bone lesions because they detect the metabolic activity, not just whether or not there are lesions are visible. Although, I think the nuclear bone scan does something comparable.

    I’ve also read (and my doctor confirmed) that cancer cell death can cause these slight elevations. So that’s actually something to celebrate, it would mean your treatment is working.

  • Bluesea20
    Bluesea20 Member Posts: 12

    @olma61. my oncologist said CT plus bone scan is best and I am not sure why this combination is better than PET. As I know the bone scan only can detect new spot but not metabolic activity. I am waiting for his explanations on tumor markers elevation.

  • mojos
    mojos Member Posts: 27

    RC Horowitz has a paid research opportunity for someone on Ibrance, ER/PR positive, Her2 negative and diagnosed in the last 3 years. For a one hour zoom interview with a person providing emotional support for you, or accompanying you to medical appointments or helping you make medical decisions, the stipend is $175. This is a reputable company and I have completed a project with them. Interviewed person can be a spouse, partner, sibling, friend or other. If you qualify and are interested in pursuing this opportunity, please private message me for contact info. Thanks. Mary Jane also known as mojos. Thanks.

  • brutersmom
    brutersmom Member Posts: 850

    Has anyone done alternate dosing. Something different then 21 on 7 off. I am on the lowest dose and 7 days is not long enough to bring my neutrophil number up. I am not sure how I feel being off 2 weeks every 21 days.

  • chicagoan
    chicagoan Member Posts: 939

    Brutersmom,

    I tried the 5 days on/2 days off for a while. I got sick for several weeks on that schedule so I dropped it. Cure-ious and Candy did the 5 days on/2 off with more success.

    My ANC is frequently below 1.0. However, my MO and I agree that I can continue since I am rarely sick and do not have frequent UTI's. When it dropped to .5 over the summer, I took a few extra days off and then resumed. My MO is of the opinion, based on numerous cancer patients using Ibrance, that the neutropenia under Ibrance is not the same as neutropenia on IV Chemo since our white cells are merely suppressed and not destroyed.

  • irishlove
    irishlove Member Posts: 420
    edited October 2023

    Checking for anyone that is part of Pfizer Patient Assistance Program. I called customer service about the letter I rec'd regarding patients who will and will not be able to apply for the next fiscal year, that starts in January (new rules and changes in income levels). She said the application should be in the mail any day. I've not seen it as of today.

    I'm still unsure about what financial papers to use to apply/requalify. Obviously the 2023 Federal Income tax returns will not have been due before the expiration of my financial aide (end of December). I asked customer service and she said sure you could use your Income Tax paperwork but I'm sure she misunderstood when I mentioned it would be the same filing year as I used to apply for aide in March of this year. Anyone can comment on this, I'd appreciate it.