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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Mar 18, 2022 09:42PM mle42 wrote:

Well, one month down, 23 to go!

My blood counts have been trending down and are well below “normal” but thus far are still above the threshold where my doc says we would need to dose reduce. (I’m on 150mg now) Happily my liver numbers are fine - my liver got all dramatical during chemo but isn’t bothered at all by verzenio. Go figure! GI stuff is….. unpleasant. I think the super painful cramps are worse than the resulting diarrhea. Things have definitely improved since I started taking my morning pill after breakfast instead of before, but now I have episodes of cramps/diarrhea/fatigue at random times of the day instead of the 10am episodes I could set my watch by for the first week. But at least at this point it isn’t every single day, so I’m willing to stick it out for another month and hope things continue to improve.

Txlorelei, I hope you’re still doing well with it.

Kotchaj, did your insurance come through

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 9, 2022 08:35AM notascalmasilook wrote:

after 4 weeks off Verzenio (for another surgery) I am restarting it tomorrow. Curious if the fatigue and diarrhea will be as bad as it was before…. Trying to just think good thoughts. No use borrowing trouble.

Dx 7/2020, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 3, 4/12 nodes, ER+/PR-, HER2- Surgery Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left) Chemotherapy AC + T (Taxol)
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Apr 10, 2022 02:06PM - edited Apr 10, 2022 02:07PM by elle2

Ladies, thank you for taking your time to post on this thread. So many of us are looking for that next new drug that might keep us away from a reoccurrence in the future. As a 13-year survivor of DCIS, I was stunned by a new DX, and a new, more aggressive primary. But I have been following along with your posts and I feel hopeful that Verzenio may work at keeping BC at bay. I have several weeks of chemo ahead, but will adamantly request a discussion of Verzenio with my MO as part of the next phase. I hope you all will continue to post and let us know more about SEs and results! Thanks again

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Apr 11, 2022 08:22PM txlorelei wrote:

I've been on Verzenio for about six weeks. My blood counts on Friday were at the low end of normal and I'm having episodes of diarrhea every 2-3 days. My doctor decided to keep me on the 100 mg dosage for now.

Someone on these forums mentioned taking a half tablet of Imodium daily to keep things in check. I decided to try that but it's too soon to tell if it works.

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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Apr 11, 2022 08:52PM mle42 wrote:

Even with half a tablet of Imodium I was having real problems swinging wildly between diarrhea and constipation. I'm having more luck with Lomotil, which is less effective against the diarrhea but for me that's a good thing, it works just barely well enough against the diarrhea and doesn't push me into constipation, so I can take it every day. Unfortunately, most days I just feel..... gross. Bloated and crampy and poor appetite and very, very tired. And still with episodes of excruciating cramps followed by liquid diarrhea a few times per week. I'm at 7 weeks on verzenio now, and I think that if I'm still feeling like this at the 3 month mark I'll ask to reduce from 150mg to 100mg. But I just don't know. I also feel like if I don't do the absolute max to prevent a recurrence, I will always regret it. It's so hard to make these decisions. In the 1 month window between radiation and starting verzenio, I was starting to feel like myself again, and not think about cancer every day. Now with these side effects, it really weighs me down, while at the same time everyone in my life thinks that I'm "done" with cancer so I feel like I'm supposed to act like I'm OK.

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 12, 2022 11:39AM - edited Apr 12, 2022 11:39AM by homemom

runnergirl - sorry for the late reply, I didn't add this to my favs. I live in Florida but I have not looked into the surgery. There is the bypass they do at the initial lymph removal now, but it isn't where they take it from another part of the body. They take nodes that are not removed,and create another passway somehow to the nodes that were removed parts that are left, if that makes sense? So I guess there are the "ends" of the affected nodes that they can attach to the nodes that weren't removed, creating path for the fluid build up to flow out.


I may ask my MO about it when I go, if not maybe contact the PS that did my surgery.

Dx 3/31/2014, IDC, 2cm, Stage IIB, Grade 1, 3/29 nodes, ER+/PR+, HER2- Surgery 4/15/2014 Lumpectomy; Lumpectomy (Left) Surgery 5/6/2014 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): Tissue Expander Chemotherapy 5/30/2014 AC Chemotherapy 7/25/2014 Taxol (paclitaxel) Radiation Therapy 10/16/2014 Hormonal Therapy 12/15/2014 Arimidex (anastrozole)
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Apr 12, 2022 05:06PM kotchaj wrote:

Well, I've been on Verzenio two weeks at the 200mg dose. OOOF! I had my two week appointment today and to say that the last two weeks have been rough is an understatement. My oncologist today took me off for a week and has added Lomotil and Questran. The big D has been HUGE. I tried taking medication before I took Verzenio in the mornings, right after, waiting until I ate, etc. I still ended up needing fluids today. Port was removed two weeks ago tomorrow. Blew a vein right out of the gate today. Sorry for the poor me post, but man this has been rough. The oncologist did say that when I restart next week if the symptoms don't improve, they will reduce dose me. I'm also on Arimidex so I feel like he has me on a mega dose for the hormone inhibitor plus this. I want this to work for me, but I'm feeling a bit down today. I guess the silver lining is I will be able to eat Easter dinner. I've been afraid to eat due to the immediate horrible side effects.

Chemotherapy 6/7/2021 AC + T (Taxol) Hormonal Therapy 6/15/2021 Arimidex (anastrozole) Targeted Therapy 6/15/2021 Verzenio Chemotherapy 8/31/2021 Other Radiation Therapy 2/9/2022 Whole breast, Radiation boost: Left breast, Lymph nodes 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
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Apr 12, 2022 08:32PM beginagain22 wrote:

kotchaj,

I’m sorry you’re not feeling good. I hope you and the docs find the magic sequence that can get you some relief

Surgery 3/18/2022 Cryotherapy (Left); Cryotherapy (Right); Lumpectomy (Left); Lumpectomy (Right); Lymph node removal (Left): Sentinel, Underarm/Axillary; Lymph node removal (Right); Mastectomy (Left): Modified Radical, Nipple Sparing, Partial, Radical, Simple, Skin Sparing; Mastectomy (Right): Modified Radical, Nipple Sparing, Partial, Radical, Simple, Skin Sparing; Prophylactic mastectomy (Left); Prophylactic mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Hormonal Therapy 5/1/2022 Arimidex (anastrozole) Surgery 5/25/2022 Dx IDC, Left, 2cm, Stage IIA, Grade 3, 2/10 nodes, ER+/PR+, HER2-
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Apr 13, 2022 12:08PM mle42 wrote:

Kotchaj, I'm sorry it has been so rough! I'm having a hard enough time with 150mg, I can't imagine trying to manage on 200mg. I wonder if your oncologist explained why you are on such a high dose? According to the Lilly website for Verzenio, 200mg is only suggested if given as a single agent, and 150mg is the standard dose if combined with endocrine therapy like arimidex.

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 13, 2022 04:18PM kotchaj wrote:

mle42- It was explained to me by my oncologist that even though I'm also taking Arimidex, because of the 20 lymph nodes that were positive for cancer, he wants me on the higher dosage for as long as I can handle it which was apparently two weeks, ha! I will try again after this week off, which by the way, today already made a difference. Instead of over 10 episodes, I'm down to two today. I never thought that most of my conversations would center around poop at this point in my life, lol. I have to laugh about it because I don't have any fluid left in my system to cry at this point in time...

thank you all for the kind words. They mean a lot to know that I am not the only one who is trying to get through this.

I also noticed that my signature was wrong. I'm stage IIIC.

Left, 2cm, Stage IIIC, Grade 2, 21/20 nodes, ER+, PR-, HER2-

Chemotherapy 6/7/2021 AC + T (Taxol) Hormonal Therapy 6/15/2021 Arimidex (anastrozole) Targeted Therapy 6/15/2021 Verzenio Chemotherapy 8/31/2021 Other Radiation Therapy 2/9/2022 Whole breast, Radiation boost: Left breast, Lymph nodes 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

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