High CA 15-3, scans not showing tumors, MO wants me on Ibrance

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2021

    Had my MO appointment yesterday after a month off all cancer meds due to my rash. Good news is that my blood labs are good. CEA is now in normal range. The CA 15-3 went up a few points, but I was worried it would double. Seeing it as measurement error. Bad news is the rash isn't all gone. I don't know what made the rash around my eyes worse. My MO also said my palms look red which I never noticed. I don't have any itchiness so that's good.

    I can restart Exemestane, but Ibrance and vaccine are on hold. Next appointment is in 3 weeks.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2021

    Saw my MO last Friday. After another 3 weeks off cancer meds, TMs rose a small amount. I restarted Exemestane on Saturday. My initial rash healed completely, but the remaining rash on my face has a different diagnosis. I don't recall (typical irritated skin rash), but the new ointments seem to help. Ibrance and vaccine still on hold though dermatologist said I could get the vaccine. MO and charge nurse want me to wait. I'll wait. I see dermatology again this Friday. I see MO in 6 weeks.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2021

    Saw my MO today. We hadn't seen my TM numbers yet, but he said he wouldn't be surprised to see my CA 15-3 go into the hundreds since I've been off Ibrance for 3 months. I'm so glad he was wrong. Got home and saw it remained stable! 🎉 CEA went up a little, but it was never as high as CA 15-3. I'll restart Ibrance 125 mg tonight and see him in a month. If my rash returns, I need to stop Ibrance.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2021

    Had MO appt after completing Ibrance after 3 months off. The appt was done before getting any blood work results. TMs dropped! Neutrophils tanked. Waiting for a reply on whether to delay the next cycle.

    After restarting Ibrance I had mild itchiness around my neck. During my off week I had some itchiness and redness in 2 areas. Good that I have a dermatology appointment tomorrow. MO said if the skin reactions continue he would switch me to another med. If my TMs drop into normal range, he would give me a med break. Said I'm not a normal case. Husband agreed too readily. 😒

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  • NCYogi
    NCYogi Member Posts: 47
    edited September 2021

    Hi Serenity,

    I just had labs done today too. Even though my TMs are in the normal range, my neutrophils tanked as well. i just had my week off of Ribo/Kisqali. I'll be curious to hear what your doctor decides about your next cycle. I'm holding for another week and will cross my fingers for both of us!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2021

    Hi NCYogi,

    He's ok with another week off of Ibrance. Yay!

    I've been taking extra time off Ibrance this year without it having much effect on my TMs. They're lower now than last year.

    🤞

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  • NCYogi
    NCYogi Member Posts: 47
    edited September 2021

    Thank you for letting me know. So if I end up with 3 weeks on, 2 weeks off on a regular basis, that's not the end of the world?? ;-)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2021

    My MO has said a number of times that I'm not a normal case. 😟 Your MO will monitor you to see what works, but you'll see other people here who have settled into a different schedule than typical.

    I just finished my 18th cycle of Ibrance. In the first year I would take a few extra days off at the most. My TMs were dropping pretty well. Who knows if they would have dropped faster this year if I kept to the recommended schedule. But I had a rash to heal.

    Hope you have great success with your current treatment!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2021

    TMs up a bit, but MO agreed to lower Ibrance dosage to 100 mg. I haven't been fasting, so I need to get that started again. Blood counts are good considering it's the beginning of my off week.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2021

    Day 14 in Ibrance 100 cycle and blood counts are good, but CA 15-3 is up a little concerning amount. CEA is down. Will wait to see what they are next time before panicking.

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  • BevJen
    BevJen Member Posts: 2,523
    edited December 2021

    Serenity,

    I'm glad that you are waiting to see. As we all know, so many things can affect our tumor markers that this seems a prudent course of action. Hopefully at your next lab pull that number will have come down. Fingers crossed for you!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2021

    BevJen - Thank you for your support! Worry was my immediate reaction, but took a deep breath and remembered it has been much higher. Hoping it's just a blip.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2022

    CA 15-3 is the same as last time at 83.4. CEA is up a little above normal. CA-125 was added last month and is normal.

    Apparently my fatigue report is significant enough that my MO is giving me a med break: a week off Exemestane and extra 2 weeks off Ibrance.

    He ordered a CT scan in 4 weeks. I can't remember when my last one was. It's in the first post. Given how many clear scans I had when my TM was insanely high, I'm happy not to have them that often. Have to remember that the techs get one try to get the IV before I ask for the nurse to access my port.

    Glad I still have some Ativan.

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  • YasirKhan
    YasirKhan Member Posts: 10
    edited February 2022

    Hi Serenity

    My prayers are with you, they way you are dealing with this continuous stress is incredible and a motivation for readers like me,

    Just a thought, why going for CT scan when we have access to nuclear medicine/ FDG PET CT scan? is it super expensive in your area? when my mother had a CT scan the radiologist simply wrote need MRI scan to confirm bone metastasis (so now wondering why the CT was done in the 1st place?),

    God bless

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2022

    Hi Yasir,

    Why CT scan? The protocol for Ibrance is to do a CT scan every 3 months. My CA 15-3 has been up to almost 1400 with clear scans (all types including PET/CT). I'm sure the PET/CT is more expensive, but I don't ever get billed for in-hospital services.My MO doesn't expect to find anything with the CT scan with my TM at 83, but he said the province requires one once a year. It's been almost 18 months, so he's pushing it. In the prior 2 years, I had so many scans I should've glowed. I'm glad for the break. With my TMs dropping and the pandemic raging, it makes sense.

    Why CT scan with MRI for your mom? I don't know. Probably depends on cancer type/symptoms/lab results. I used to have severe sciatica and was in constant pain. I had a few bone scans to check for mets. Sciatica and chronic pain stopped in 2017. The next year my TMs started rising, and most scans were CTs. My MO expected me to have pain once my CA 15-3 exceeded 50 or 60, but it hasn't happened so far.

    Hope that answers your questions somewhat. Let me know if you have more. Best wishes to you and your mother.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2022

    Good news: CTs clear. I have multiple unremarkable organs. Some fibrosis likely from rads. Some gallstones. “No evidence of metastatic disease".

    Bad news: TMs rose. CA 15-3 from 83.4 to 99.7 and CEA from 6.3 to 12.6.

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    🤨 Guess we lean towards good news.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2022

    Saw MO today. I had 4 weeks off and just completed a cycle. Did have a few mouth sores and itchy neck during off week. Neutrophils 0.88 at the end of off week. RBC is below normal.Getting another cycle off Ibrance. Will get 2nd covid booster during break. CA 15-3 stable, but CEA has 2nd big rise. My next appointment is in a month. 😐

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