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

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  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    My CA 15-3 dropped from 270 to 162 over 2 months. Yay! Ongoing fatigue and rash on neck. Due to low ANC, MO said to delay cycle #6 (125 mg) by a week.

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  • BevJen
    BevJen Member Posts: 2,341
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    SerenitySTAT,

    Congrats on the TM drop. That's fantastic. I'm pretty sure I will be in for a treatment change later this month -- I have a CT scan on May 19th, video appointment with my MO later that same day with results, and now I've scheduled a videoconference with Dr. Cristofanilli at Northwestern the next day to get some input on what to do next. My ILC isn't showing upon on the CT scans, but those TMs keep climbing -- mine last month were at about 330 (My MO does CA27.29)

    Continued success with Ibrance for you! It doesn't seem to be holding me.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Thanks, BevJen!

    I know how unsettling it is for the TMs to rise and repeated scans not find anything. Hope you can get on a treatment that works very soon.


  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    My ANC is 0.94 after 9 days off Ibrance. My MO said that its real value is 75% of the WBC, so he's not worried about it.

    CA 15-3 is slightly lower at 155, but CEA is at its highest value. Still not as beyond normal as 15-3.

    Cycle #7 at 125 mg starts tonight. My next appointment will exclude blood tests.

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  • BevJen
    BevJen Member Posts: 2,341
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    SerenitySTAT,

    Nice drop on the CA 15-3. Wow! Weird about your CEA.

    Still haven't really discussed treatment change in any serious way with my MO -- she wanted me to finish out my scans and then we got close to my next appointment -- so next week will be the week to discuss, I guess. I've already sent her a series of questions. Like you, though, she thinks that my TM rise is due to bone involvement. The Ibrance is holding my liver mets, though, and those are the ones that scare me more. We'll see!

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Yeah, the CEA values are weird. My husband read that below 10 is still not bad. Plus it was trending down for months before. It's a blip for now.

    Glad your MO is not rushing to change treatments until she has all the results. Hope your scan results are good. Don't know about you, but this stuff is tiring!

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    I had my blood test yesterday during my 8th cycle of Ibrance (day 12). MO was OK with blood counts, so no change in Ibrance dosage. My rash that had spread is healing. My TMs are stable (small increase in 15-3, drop in CEA). He is scheduling a CT scan, but doesn't expect to find anything.

    With the pandemic, my hospital visits are much shorter. I don't wait for all my blood tests to be complete, and I don't wait to schedule my next appointment. My TM numbers were ready when I arrived home. The hospital will schedule my next appointment and CT scan and notify me by mail. My schedule is wide open.

    My only problem yesterday was when I pulled off the bandage from the blood draw. I must have nudged a nerve. I felt pain from my elbow up my arm into my head. Not fun at all.

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  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Met my MO this afternoon. My CT scan shows NED! It's my off week +1 day, and my ANC is 0.95. CA 15-3 dropped by 21 while CEA increased slightly (?). Ibrance #10 starts tonight.

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  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    It's day 12 of Ibrance. Had blood drawn and met with MO this morning. TMs are down from last check. Without waiting for blood counts, he wants me to delay the next cycle by 2 weeks to give me a break. Xgeva schedule changed to every 8 weeks. Not bad.

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  • BevJen
    BevJen Member Posts: 2,341
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    Wow, Serenity, looks like nice drops. Great.

    And a nice little holiday from Ibrance to boot -- I'd take it.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Yes, the extra week off will be nice. I'm glad he changed my Xgeva schedule. I'll endure the fatigue since the TMs are dropping. Hope they eventually go down to normal.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    It's day 12 of Ibrance. MO is pleased with blood counts. I'm having increased fatigue, hair thinning, and infrequent acid reflux since switching to the tablet form. He said I could take extra time off after the next cycle. When I returned home, all blood test results were ready. Had a big drop in CA 15-3! From 127 to 103.

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  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Blood work on day 19 of Ibrance 125 mg. ANC isn't too bad at 0.87. Both TMs down with CA 15-3 at 79 (from 103). 👍

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  • BevJen
    BevJen Member Posts: 2,341
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    Serenity,

    Wow, your markers ARE taking a huge dive. Guess your MO is happy with these numbers? I'm sure you are.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    BevJen - Yes, I'm very happy. There's a moment of dread as I wait for the results, but these last few tests have been big drops. This is the first time my CA 15-3 has been under 100 in a long time. Hope it keeps dropping. 🤞

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Saw MO this morning. At the end of the 4-wk cycle (125 mg), my ANC is 0.59. MO is not worried saying the actual value is 75% of my WBC (2.2) which would make my ANC well above the minimum 1.0. My TMs are stable. Guess I can't expect big drops each time. In the past few cycles I seem to be prone to mouth sores at the very end of week 3. A dab of peppermint oil or a peroxide rinse is enough to nip it in the bud. MO said I could take an extra 2 weeks off. 🎉

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  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
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    I'm not sure where to post this, so will post on multiple threads. I am so discouraged, depressed, angry as I explore getting different treatment options, including clinical trials. This is the third BC for me. Is each one "new" or did the original beat the treatment? I'm not sure if any of the treatments worked. Just talked to MD Anderson and they indicated they would not do anything different unless it was shown that the new treatment I just started fails. They would not consider me for clinical trials either. Is this generally the way it is with getting 2nd opinions on treatment options? Dec 2019 showed metastasis through skin, but nothing found in organs. Do I have to wait for it to show up in organs before other treatment is considered? That is so wrong. See oncologist today, will find out where Tumor markers are. No longer taking Ibrance, so will they go up? 9/2019 CA 27-29 25.6; 8/2020 43.1; 12/2020 50.4; 2/2021 48.3

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

    6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.

    12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs. Lymphedema getting very bad.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    I'm sorry that Ibrance has stopped working for you. I saw responses to you in some other threads, so I won't respond to all your questions.

    Do you have the TM results yet? Your marker isn't too far above normal. Has your rash changed since switching meds? It may take a bit longer to decide if the treatment isn't working.

    Have you seen a certified LE therapist? They won't do MLD on a rash, but they can help with exercises to work on your range of motion and check your skin. LE makes us susceptible to cellulitis. It's important to keep your skin moisturized. I would use aloe vera gel from the plant.

    If you can't see a therapist soon, I recommend Qi Gong to help with mobility. Plus it's calming.


  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
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    Still waiting for blood work for tumor markers. Swelling in arm has gone way down, and I think even some of the redness is going away. Part of the problem might have been blood clots. Had a Angio-Thorax CT Friday because of increasing shortness if breath, was sent to ER immediately, who removed 1 1/2 liters of fluid from chest cavity (not lungs). Put on blood thinner because of suspected clots. Due for a followup ultrasound to check on clots. I was wearing a very tight compression wrap since Wednesday. When I took it off, noticed swelling way down on Saturday and even better this Monday morning. . Holding off on LE pending status of any clots - concerned that if there are clots, massage could loosen them and let them travel/lodge where could cause very serious problems. I wonder if ultrasound can distinguish between blood clots and fibrotic tissue from lymphedema. LE cautioned on risks of cellulitus and possible sepsis from any infection.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Glad the swelling is down, but sorry to hear about the SOB, fluids, and possible blood clots. I'm not certain if the ultrasound could tell the difference between clots and fibrotic tissue, but I would think so.

    Keep checking your skin. I found a small cut on a finger on the LE side. Put antibiotic cream and bandaid on right away.


  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
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    Serenity - thank you for the remminder to check for cuts etc, which I do not do enough. When arm swollen,definitely more sensitive. Scratching which used to feel good, no longer does. I did put neosporine on one scratch

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Sometimes the need to scratch cannot be ignored. While wearing my regular compression sleeve, I run my wood comb over my whole arm from fingers to shoulder. Feels great!

  • dlittkemann
    dlittkemann Member Posts: 91
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    Hello!

    My markers were 500’s... Now 198. No scan for 6 mos so I’m due this month. So afraid tho. Praying this drop is positive but I see from some replies it doesn’t always mean a good scan???

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Hi dittkemann - That's a good drop! Are you taking any meds? I hope your next scan is clear. It is scary. TMs aren't indicative for everyone. Maybe your rise is due to something else?

  • dlittkemann
    dlittkemann Member Posts: 91
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    The rise was failing on 2 other drugs but this third one brought about this drop. The name has left me. Chemo brain is definitely a thing! Will look and post here tmrw. I just pray that drop does correlate w a good scan. At least no progression 🙏🙏

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Third time's the charm they say! Hope it continues to drop and your scans are good. 👍

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Blood labs only on day 7 of cycle. My MO appointment was delayed unexpectedly to Friday. Not bothered due to a rash that's slow to heal. I was worried about my results because of my rash and having my last 2 cycles each with 3 weeks off. Instead my results are great. My usually low counts are in normal range. One is high, but it's most likely due to my rash. My CA 15-3 is 58.4 down from 80.1! CEA steady at 5.3. Feel like celebrating! 🎉

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  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    It's never good to be medically interesting. I've been diagnosed with AGEP, a rare skin reaction from medication (combo Ibrance and Moderna).

    I already had a small rash from a bug bite when I got the Moderna shot during my Ibrance cycle. Then the rash spread even more. I delayed the next Ibrance cycle to heal, but I didn't wait long enough. After a week of Ibrance any rash that hadn't healed got worse. I saw my MO Friday. I stop all cancer meds until the rash heals completely and he sees me again.

    The nurse who called for a derm consult said they'd find me interesting. The dermatologist who prescribed topical ointments kept saying "interesting" as I gave her my rash history. She wasn't familiar with cancer meds, so I had to explain the side effects of Ibrance. She saw my counts look normal this week, but they're usually below normal range. My temperature has been normal, but still higher than my usual.

    Glad my TMs have dropped so much. Hope this break from cancer meds doesn't reverse it.

  • divinemrsm
    divinemrsm Member Posts: 6,233
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    Serenity, is the rash diminishing any since you’ve stopped the cancer meds five days ago? When is your next oncologist appt?


  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
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    Divine - Yes, the rash started improving after a few days off cancer meds. It's so much better now than when I restarted Ibrance, but it feels like I'm still fighting to keep it from spreading. The itchiness is driving me nuts. Going through lots of cream, aloe, and ointments.

    My next appointment is June 18. That's 4 weeks off Ibrance/Exemestane. 😧