Topic: Stage III and Verzenio

Forum: Stage III Breast Cancer — You are not alone. Meet others who have Stage III breast cancer.

Posted on: Jan 23, 2021 07:35PM

Posted on: Jan 23, 2021 07:35PM

GraceBer wrote:

I may need to venture into the mets forum for SE coping strategies, but I’m wondering if there’s anyone else who’s been put on Verzenio (vs Ibrance or Kisquali) to prevent recurrence? My MSK oncs and Yale onc (I switched to Yale this past summer) all agreed that I should be put on a CDK 4/6 inhibitor. We waited until this fall (regional recurrence that made me stage III - DXed July 2019), due to finishing treatments and me pushing it off further due to Covid, to start. And though I was originally going to be put on Ibrance I was put on Verzenio due to its positive data coming out of the trial.

Oof! Verzenio has been rough. The Covid silver-lining is that being at home all the time is convenient for my now daily attacks of diarrhea, but I’ve got to get it under control because I want to have a better quality of life (especially in the Covid After Times).

Immodium is pretty effective at stopping the diarrhea after one or two episodes, but it hasn’t been effective used as a preventative. So, I’ve turned to probiotics a week ago. I’m taking a daily capsule of Align and trying to eat some yogurt every day. So far, I’m seeing no improvement with the probiotics.

I’m trying to up my water intake and have supplemented it with the Liquid IV powder (basically, healthier Gatorade - electrolytes with more vitamins and less sugar). That’s helping me with dehydration and keeping labs looking pretty good.

i’m taking 150mg - the recommended dose. If I can’t find a better way to manage the GI side effects, I think we’ll need to reduce my dose.

Ugh! This sucks 😕


Dx 11/26/2013, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 12/20/2013 Lumpectomy: Left Dx 7/17/2019, IDC, Left, <1cm, Stage IIIC, Grade 3, ER+/PR+, HER2-, Surgery 8/21/2019 Lymph node removal Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall Targeted Therapy Verzenio Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 13, 2022 05:19PM mle42 wrote:

Kotchaj - got it. makes sense. hope you enjoy your week off and feel better!

I totally relate.... I have had more discussion about my bowels in the past month than I think the entire previous 40 years of life! =)

Dx 5/17/2021, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- Surgery 10/25/2021 Lumpectomy (Right); Lymph node removal (Right): Sentinel Radiation Therapy 11/30/2021 Whole breast, Radiation boost: Right breast, Lymph nodes Hormonal Therapy 1/1/2022 Arimidex (anastrozole) Targeted Therapy 2/17/2022 Verzenio Chemotherapy AC + T (Taxol)
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Apr 28, 2022 01:34AM mpv459 wrote:

I am on it and would love to be part of the study if the offer is still there. I am stage 3c with more nodes than sense. Did anyone have problems with mouth sores not going away while on this med. I have had lots of blood problems so hoping she will drop my dose.

mpv459
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Apr 28, 2022 01:35PM kotchaj wrote:

mle42-

Just saw your post about insurance. YES, it came through, yay!

I restarted my Verzenio this past Tuesday at 150 mg instead of the 200 I did prior. I was also able to do a dose reduction exchange with the pharmacy as they had already sent my next months' worth of pills. My doctor had to complete a form and send it in and then the pharmacy contacted me. You're allowed to return one full month of meds to them in exchange for the lower dosage. I was so thankful because there was no way I could take the 200 anymore and didn't know that was going to work with me needing the lower dosage. My pharmacy is Accredo that my insurance uses.

Chemotherapy 6/7/2021 AC + T (Taxol) Hormonal Therapy 6/15/2021 Arimidex (anastrozole) Radiation Therapy 2/9/2022 Whole breast, Radiation boost: Left breast, Lymph nodes Targeted Therapy 2/22/2022 Verzenio Dx IDC: Mucinous/IDC, Left, 3cm, Stage IIIC, Grade 2, 20/21 nodes, ER+/PR-, HER2- Surgery Lymph node removal (Left): Underarm/Axillary; Mastectomy (Left): Modified Radical Chemotherapy Other
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Apr 29, 2022 02:03PM mle42 wrote:

Oh good! I can’t imagine 200 mg. My onc keeps suggesting we reduce my dose, but my labs are mostlyfine so I’m really going to try to stick it out until at least the 3 month mark on 150 mg.

Dx 5/17/2021, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- Surgery 10/25/2021 Lumpectomy (Right); Lymph node removal (Right): Sentinel Radiation Therapy 11/30/2021 Whole breast, Radiation boost: Right breast, Lymph nodes Hormonal Therapy 1/1/2022 Arimidex (anastrozole) Targeted Therapy 2/17/2022 Verzenio Chemotherapy AC + T (Taxol)
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Apr 30, 2022 01:20PM txlorelei wrote:

Taking a half tablet of Imodium every morning seems to be working for me. I tried stretching it to 36 hours, but that was unsuccessful.

After nearly 2 months on the 100mg dosage, my blood counts are slightly low so my MO didn’t recommend any changes.

Unfortunately, my MO is leaving the cancer center so she introduced me to a new doctor this week. The visit was so fast I couldn’t get a good read on New Doc. I guess I’ll learn more at my next appointment.

Dx 7/7/2020, ILC, Right, 5cm, Stage IIIC, Grade 2, 26/26 nodes, ER+/PR+, HER2- Hormonal Therapy 8/12/2020 Femara (letrozole) Surgery 1/4/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right): Simple; Reconstruction (Right): Aesthetic Flat Closure Dx 8/25/2021, LCIS, Left, 1cm, ER+/PR+, HER2- Surgery 12/11/2021 Mastectomy (Left): Modified Radical; Reconstruction (Left): Aesthetic Flat Closure Radiation Therapy 1/3/2022 Whole breast: Lymph nodes, Chest wall, Right breast Targeted Therapy 3/3/2022 Verzenio Chemotherapy AC
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May 23, 2022 08:30PM blue22 wrote:

I started Verzenio last week.

How soon did most of you have side effects?

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2- Surgery 7/30/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal; Mastectomy; Mastectomy (Left) Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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May 24, 2022 11:47AM mle42 wrote:

Blue22, diarrhea was my first side effect and it showed up on day 5. I would recommend having imodium at the ready, but don't take it until the diarrhea starts or you will likely end up terribly constipated. Some people need to take the full dose of imodium (2 pills), I couldn't ever take more than a quarter dose (1/2 of one pill) without being constipated. So be prepared to play around with it. Good luck, I really hope that it treats you well!

I had been hoping that my side effects would get better over time, since it seems common for the diarrhea to ease up after 2-3 months. Unfortunately for me, after 12 weeks on the 150mg twice a day dose, diarrhea and other GI symptoms were getting worse, not better, so I asked to reduce to 100 mg. I had just gotten a refill of the 150mg pills and have plenty of those around, so I am trying to split the difference: 100mg in the morning and 150mg at night. And even with that small reduction (17% reduction in daily dose), just one week later things are already lot better. I still have some bad episodes a couple times a week, but it's not every single day, and my energy is also coming back! I'm so much more hopeful for a good quality of life for the next 2 years.

Dx 5/17/2021, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- Surgery 10/25/2021 Lumpectomy (Right); Lymph node removal (Right): Sentinel Radiation Therapy 11/30/2021 Whole breast, Radiation boost: Right breast, Lymph nodes Hormonal Therapy 1/1/2022 Arimidex (anastrozole) Targeted Therapy 2/17/2022 Verzenio Chemotherapy AC + T (Taxol)
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May 24, 2022 12:49PM kotchaj wrote:

Blue22, it was day 6 for me. I had to get Lomotil prescribed to help with my D once it started. That was another week later when that was prescribed. I also started at the 200 dose and it about did me in. The 150 feels much better even though I still have SE's. They're not as bad as before, but still pretty often and still not really able to pinpoint what causes it and what doesn't. I will say that I usually have a small glass of milk before bed each night and will have to stop that as it seems to exacerbate the D.

I do take one Imodium as soon as I have symptoms and follow up with a Lomotil. That helps me and keeps me from constipation.

Everyone is different as MLE42 says as to what works for them.



Chemotherapy 6/7/2021 AC + T (Taxol) Hormonal Therapy 6/15/2021 Arimidex (anastrozole) Radiation Therapy 2/9/2022 Whole breast, Radiation boost: Left breast, Lymph nodes Targeted Therapy 2/22/2022 Verzenio Dx IDC: Mucinous/IDC, Left, 3cm, Stage IIIC, Grade 2, 20/21 nodes, ER+/PR-, HER2- Surgery Lymph node removal (Left): Underarm/Axillary; Mastectomy (Left): Modified Radical Chemotherapy Other
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May 24, 2022 08:56PM blue22 wrote:

Thank you!

I had serious D with H/P + Xeloda. I tried Immodium, but that just gave me terrible constipation...

I have the Immodium at the ready if needed! I'm just worried it will hit me at the least convenient time....

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2- Surgery 7/30/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal; Mastectomy; Mastectomy (Left) Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Jun 2, 2022 12:14AM blue22 wrote:

I am now two weeks into Verzenio. I've had two brief episodes of D, took immodium immediately and it subsided.


Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2- Surgery 7/30/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal; Mastectomy; Mastectomy (Left) Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)

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