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

I'm glad this new section has been created. I don't know where I fit in anymore. My CA 15-3 has been above normal for almost 2 years. It's been as high as 1386 and currently at 586. I've had multiple scans that haven't found any clear cancer. My latest scan was an abdominal MRI to evaluate an 8 mm lesion on my liver (seen on CT in Aug 2019) that was not present in Apr 2019. The results still weren't ready yesterday, so my MO asked them to read it (at 1 pm). Their response was "It's not straightforward." ??? My MO called this morning saying they didn't finish their reading until 7 pm. He actually disagrees with their findings. They think a spot in my bone needs more evaluation and my liver is ok. The bone area spot is where I've always felt pain from my sciatica that I've had before cancer, and it’s been scanned multiple times. I don't have pain if I'm careful. My MO wants me to start on Ibrance and Xgeva (need insurance authorization first).

Am I Stage IV? Does it make sense to add these new meds? Has anyone seen anything like this? All these scans and tests have been overwhelming.

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Comments

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    A little history:

    I completed active treatment Nov 2016 and started Tamoxifen Oct 2016.

    2018 - CA 15-3 rose from 34 to around 300, multiple scans

    2019/01/21 CA 15-3 395

    2019/01/23 CT

    2019/03/01 PET/CT

    2019/03/08 CA 15-3 618

    2019/04/02 CA 15-3 714

    2019/04/02 transvaginal ultrasound (doc also examined other abdominal organs via external ultrasound)

    2019/04/02 switch from Tamoxifen to Exemestane

    2019/04/04 CT

    2019/04/17 PET Bone - "No typical evidence of active metastatic bone disease on this study."

    2019/05/03 CA 15-3 934

    2019/06/14 CA 15-3 991

    2019/07/05 CA 15-3 1386

    2019/07/20 about this time started fasting twice a week (goal is 36 hours each fast) and almost always at least 16 hours minimum overnight fast

    2019/08/23 CT - "Suspected new solid liver lesion at dome of segment 7 measuring about 8 mm. The other liver lesions suggestive of a cyst is stable. MRI suggested."

    2019/08/28 CA 15-3 921 (CT scan report wasn't ready at appointment)

    2019/09/27 CA 15-3 811

    2019/10/18 MRI (abdominal) - liver lesion not cancer from radiologists, but MO disagrees

    2019/10/25 CA 15-3 586

    Edited:

    2019/12/05 Submitted drug authorization forms for Ibrance and Xgeva

    2019/12/13 Xgeva #1, 12/15 Ibrance #1 (125 mg) - more fatigue/joint pain, rash during off week, low WBC/ANC

    2020/01/10 CA 15-3 334, Xgeva #2, 01/12 Ibrance #2 (125 mg) - fatigue/joint pain, light rash, low WBC/ANC/RBC/HCT

    2020/02/03 CA 15-3 280, 02/10 Xgeva #3, Ibrance #3 (125 mg) - fatigue, mouth sores for almost 2 wks, low WBC/ANC/RBC/HCT

    2020/03/06 CA 15-3 270, 03/11 Xgeva #4, Ibrance #4 (125 mg) - fatigue

    2020/03/20 CT - (04/02) MO called. Nothing showed in my liver. There were sclerotic areas in my bone. He compared them to my past scans and thinks it's the bone lesions that caused the rise in my TMs. No blood work due to COVID-19.

    2020/04/09 Xgeva #5, 04/12 Ibrance #5 (125 mg) - fatigue, rash on neck

    2020/05/08 CA 15-3 162, 05/11 Xgeva #6 , 05/18 Ibrance #6 (125 mg) - fatigue, rash

    2020/06/12 CA 15-3 155, Xgeva #7, Ibrance #7 (125 mg) - fatigue, rash

    2020/07/10 Xgeva #8, 07/12 Ibrance #8 (125 mg) - fatigue, rash healing, few mouth sores

    2020/07/24 CA 15-3 162

    2020/08/07 Xgeva #9, 08/11 Ibrance #9 (125 mg)

    2020/08/20 CT - NED! In comparison to the CT pre-Ibrance, radiologist thinks cancer was in my sacrum which is what MO suspected from last CT.

    2020/09/04 Xgeva #10

    2020/09/08 CA 15-3 141, Ibrance #10 (125 mg)

    2020/10/07 Xgeva #11, 10/08 Ibrance #11 (125 mg) - take 2 weeks off

    2020/10/20 CA 15-3 127

    2020/11/12 Xgeva #12, Ibrance #12 (125 mg tablets), resume weekly 36-hr fasts

    2020/12/10 Ibrance #13 (125 mg)

    2020/12/22 CA 15-3 103, 2021/01/12 Xgeva #13

    2021/01/14 Ibrance #14 (125 mg) - fatigue, slow wound healing

    2021/02/02 CA 15-3 79, 2021/02/16 Ibrance #15 (125 mg)

    2021/03/16 CA 15-3 80, Xgeva #14

    2021/03/30 Ibrance #16 (125 mg) - extra 2 wks off suggested by MO

    2021/04/17 Moderna dose 1 - severe rash

    2021/05/11 Ibrance #17 (125 mg) - extra 2 wks off due to ongoing rash, 2021/05/14 Xgeva #15

    2021/05/17 CA 15-3 58, MO delayed

    2021/05/21 MO appt, stop Ibrance/Exemestane until rash heals completely, derm diagnosed AGEP

    2021/06/18 CA 15-3 61, rash on body healed, hold Ibrance/vaccine until rash on face all gone, can start Exemestane

    2021/07/09 CA 15-3 65, Xgeva #16, rash on face worse, new derm consult, new ointments, Exemestane restarted next day

    2021/07/16 derm follow up - 90% better

    2021/07/30 Moderna dose 2

    2021/08/23 CA 15-3 64, ok to restart Ibrance #18 (125 mg), 2021/09/02 Xgeva #17

    2021/09/20 CA 15-3 57, Ibrance #19 (125 mg)

    2021/10/18 CA 15-3 64, 2021/10/25 Ibrance #20 (100 mg), 2021/10/29 Xgeva #18

    2021/11/22 Ibrance #21 (100 mg)

    2021/12/06 CA 15-3 83, 2021/12/20 Ibrance #22 (100 mg)

    2021/12/20 Vaccine #3 - Pfizer - little lump and raised, itchy spots around injection site, much milder than Moderna

    2022/01/25 CA 15-3 83, pause Exemestane 1 wk, pause Ibrance extra 2 wk

    2022/02/07 Ibrance #23 (100 mg)

    2022/02/08 CT (chest, abs, pelvis - NED)

    2022/02/17 Xgeva #19

    2022/03/08 CA 15-3 100, CEA 13 , CTs clear, pause Ibrance 1 cycle, 04/04 Ibrance #24 (100), 04/11 Xgeva #20

    2022/05/03 CA 15-3 102, CEA 22 , pause Ibrance 1 cycle, 05/05 Vaccine #4 - Pfizer

    2022/05/31 MO appt

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    My lovely chart Sad

    image

  • BevJen
    BevJen Member Posts: 2,341

    I can imagine how you are feeling. Tumor markers aren't reliable for everyone, but those seem to be high numbers. Have you asked your MO about biopsy of the liver lesion or the bone issue? That might be more definitive for you. I would probably inquire about that before going on Ibrance. Also, Ibrance is normally given with an anti-hormonal -- does she plan on continuing exemestane with it? Or switching you to something else.

    Good luck.

  • spookiesmom
    spookiesmom Member Posts: 8,148

    After my cancer came back in January, had surgery and rads. Labs are good since, scans are good. MO says I’m stage 4, put me on ibrance and letrozole.

    Aside from being insanely expensive, ibrance isn’t bad. Be sure to ask your MOs office to help you with financial aid. I can’t do the AIs so am moving to faslodex. If this is what it takes to keep it away, I’ll do it.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019

    I can completely understand your dilemma.

    Any chance you could get a second or third opinion?

    Maybe there is someone out there that has an idea that hasn’t been considered or thought of yet?

    Tumor markers are so weird! I feel like they are so unreliable for people yet other patients swear that they do tell a story about how their cancers are progressing and find them invaluable.

    Please keep us posted, and hugs to you from me, Philly

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    Thank you for your responses!

    BevJen - My MO said I would continue Exemestane with Ibrance/Xgeva. I haven't asked about a biopsy, so I'll do that. Good idea!

    Spookiesmom - Glad to hear Ibrance hasn't been too bad for you. I have private health insurance (yes, even in Canada!) so we have to get their approval first. My co-pay is 20% with max family out of pocket at $800. Guess we'll hit that limit. :(

    LoveFromPhilly - I saw my BS and RO this summer. From what I hear, they've been discussing my case with other doctors. There's a tumor board at my hospital, and I guess no one has seen such high values with no clear sign of cancer. I hear “bizarre", “abnormal", “atypical", and now “not straightforward". I scream on the inside. Big hug back!

    I think I have a UTI that started earlier today. I'm not prone to UTIs, but this would be my second this year. Before this year I haven't had a UTI in at least 20 years. I don't want to think of cancer each time I hurt, but it's been difficult this year.

  • ssinuk
    ssinuk Member Posts: 63

    Your situation is so difficult and must be a huge strain. But I agree about biopsies. I think I’d insist before starting new therapy. You need more certainty about what you’re dealing with. And your markers are going down right? That’s good news of some mysterious kind!

  • ZZZAAAZZZAAA
    ZZZAAAZZZAAA Member Posts: 23

    any one experienced with high tumors ca15.3 2432 ???

    my mother 71 years and she have stage 4 and she take armosin 25 mg

    and mets in bone and 2 spot in liver thanks

  • Partyoffive
    Partyoffive Member Posts: 53

    Hi

    I’ve been Stage 4 for 61/2 years and have always had stable tm’s last dec they started creeping up and a year later and 5 pet,3 ultra sounds and 2 biopsies later I’m still stable but my tm’s are the highest they’ve ever been. I’m on tamoxifen the med I started on and don’t want to switch unless there is concrete evidence of a progression and my onc feels the same way. I had a 2nd and 3rd opinion and all agree tm’s are unreliable and the scans are what they use to confirm progression.

    Good luck

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    SSInUK - It definitely has been a strain. I'm waiting to hear from my insurance company for drug authorization. I sent the forms just last week due to procrastination. My husband thinks the spots are too small to biopsy, but I plan to ask my MO once I hear back from the insurance company. In the meantime I'm hoping the TM dropping has continued during my unplanned break in scans and tests.

    ZZZAAAZZZAAA - Have you posted on the bone or liver mets threads? I'm still new to this.

    Partyoffive - Thanks for sharing your experience. Thrilled your scans show no progression. ThumbsUp

  • ZZZAAAZZZAAA
    ZZZAAAZZZAAA Member Posts: 23

    SerenitySTAT yes it s me

    did you have expericiend with ca15.3 2432 ??? and doctor now says armosin it s doesn t work with my mother

    and he will try with another hermon and finaly if the hormon doesn t respond he will use chimo and my mother have 72 years and she doesn t have good health for chimo

    i m scaryyyy please tell me your experience if you have or any personne else ??

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    Your mother is over 20 years older than me. My experience with chemo would not help. She would not receive the same regimen.

    Try posting in the caregivers area. Perhaps you can find others who are helping an elderly parent.


  • ZZZAAAZZZAAA
    ZZZAAAZZZAAA Member Posts: 23

    SerenitySTAT yes but i want know any one experience with high ca15.3 2432 or more

    and she is down again ?? please if you have experienced with that tell me your history or if you know history of other personne tell m his story please i need to be calm

    please how you down your ca15.3 ? which treatement you taked t

  • Anewbreath
    Anewbreath Member Posts: 122

    ZZZAAA- I know this is all so stressful! I want you to know that my TM were high and after treatment they are back to normal. Initial diagnosis was 2008 and out of the blue I was diagnosed MBC in 2018 with bone and organ involvement. My TM were 1600 and I did weekly taxol and carbo for 6 months and my TM were down to 500-700?. I then started xgeva, ibrance and Femera. Each month my TM dropped about 10% and eventually back to normal range🙏 It can happen and you have received good advice here to get a biopsy. Maybe some chemo first and then Xeloda, Verzenio and Faslodex are good options. I’m praying she gets the TM under control.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    ZZZAAAZZZAAA - My history is detailed in the first 2 posts.

    Anewbreath - Thank you for sharing your experience. I'm glad your treatments have been working. :)

  • ZZZAAAZZZAAA
    ZZZAAAZZZAAA Member Posts: 23

    Anewbreath Anewbreath thanks for you you are my family and feel secure here thanks


  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    Just an update.

    After delays on my part, I finally got the drug authorizations to the insurance company last Friday. They quickly approved it on Monday and called yesterday to confirm. Today my MO's nurse called. They will send info to Pfizer who will cover what my insurance doesn't cover. Whew! She will also send the prescription to a specialty pharmacy that will deliver the Ibrance (probably start this week). My Xgeva shots will be done at the local clinic where I get my port flushed. Blood draw will be scheduled to be 3 weeks after I start.

    I'm already tired thinking about it. :(

  • ZZZAAAZZZAAA
    ZZZAAAZZZAAA Member Posts: 23

    Img 2155SerenitySTA… courage , my mom in faslodax now and doctor say to us we can take ibrance with but is very expensive in egypt and we can t buy it , and my mother doesn t have asurance in egypt ,so you are lucky to found the medecin pray to god i always do that for my mother

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    I don’t know if this will help, but here is contact info in Egypt for the company that makes Ibrance, so you can ask them if there is any help available with the cost of the drug.

    https://pharmaboardroom.com/directory/pfizer-egypt/

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    ZZZAAAZZZAAA - Thank you. I know how fortunate I am with the health care I have. I hope the link that ShetlandPony posted can help you get the Ibrance for your mother.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    The downward trend continues from a high of 1386. My CA 15-3 dropped from 586 to 334 in 2 1/2 months. I just completed 1 cycle of Ibrance (125 mg), so the new med can't claim all credit for the decrease. I start the next cycle at the same dosage.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    Updated chart:

    image

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    After 3 1/2 weeks my CA 15-3 is down to 280. It's the first day of my off week, and my counts are below normal. Cycle 3 remains at 125 mg.

    image

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    My CA 15-3 dropped a small amount to 270. I was worried that 2 weeks of mouth sores would result in an increase. Guess I'll take stable. Still have low counts. MO said to delay next cycle for a couple of days. Cycle 4 still at 125 mg.


    image

    ETA:

    image

  • Partyoffive
    Partyoffive Member Posts: 53

    Serenity

    My chart looks just like yours-after a year of my tm’s rising I switched to letrozale and 100 mg of ibrance in January. Last week my tumor markers were stable-I was disappointed I was hoping they would have gone down-and a lot but I guess stable is better then up. I have scans in April so I’ll have more definitive answers then. How do u feel on 125 of ibrance? My counts are good and I’ve had no issues with the 100 mg of ibrance so I was considering moving up the dose.

    Kristin

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    When I showed disappointment that my TM didn't drop more, my MO reminded me that it rose slowly at the beginning (30 to over 300 in a year). Now it's slowly dropping (hopefully). I have a scan later this month.

    I edit post 1 in this thread to track my treatments and side effects. I've always taken 125 mg, and fatigue has been my main issue. My counts started dropping immediately. My joint pain increased at first, but it's not really noticeable now. In the first cycle I had an unpleasant rash during my off week. It started on the back of one hand. Spread up that arm. Appeared in my lower back and legs. It was itchy. Since it started after the night when I missed a dose of antihistamine, I now take it religiously. Mouth sores have been bad this last cycle, but a frequent, diluted hydrogen peroxide rinse solved that. I'm hoping that my TMs can drop to normal and with clear scans, my Ibrance dose can be reduced or dropped entirely. Maybe you won't have the same effects because you've been on Ibrance already?

    Let me know how it goes.

  • Kirbygirl
    Kirbygirl Member Posts: 2

    I am in a similar situation in regards to medications. My staging has gone back and forth from Stage III to Stage IV because of lesions in my bones. When I was first diagnosed in July 2019 there was a lesion in my spine at C7, I was told I was Stage IV and I would follow Stage IV protocols. My neurologist stepped in and said that the assumption should not be made on a scan alone and since a biopsy on the area was out of the question, I was put on ACT treatment. After chemo was completed in Feb of 2020, a follow up CT scan showed 3 more bone lesions. Again I was told I was stage IV based on the scans. Because the new lesions were in areas that could easily be biopsied we went forward and the pathology results came back negative for tumor. At this time the proposed treatment is radiation, an aromatase inhibitor, a CDK4/6 inhibitor and a bone-modifying agent.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    It's not clear cut sometimes, is it? Glad your biopsies were negative. I just had a CT scan yesterday. My TM drop is significant, so I'm not sure what my CT scan will show or how the results will be interpreted. I see my MO in early April.

  • husband11
    husband11 Member Posts: 1,287

    What do you think initiated the downward trend from the peak it reached in July of 2019?

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534

    The only change I made after early July 2019 was in my fasting schedule. My overnight fast was usually 16 hours most nights. From mid July until I started Ibrance in December, I fasted 36 hours twice a week. This coincided with the biggest drop in my TM. I try to fast 36 hours during my off week now, but it's harder to do twice a week. Instead I fast about 20 hours a few days a week throughout the cycle. When I can take the tablet form of Ibrance I'll go back to fasting 36 hours once or twice a week. I'm not certain it's the fasting, but I like to fast, and I'm careful. If I feel I need to it, then I eat.