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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Jan 25, 2022 08:08PM homemom wrote:

Juju-mar Yes and no. Seems this is a very promising treatment and may keep you from having to stay on Arimidex for 10 year like me. Maybe you'll be considered "cured" after 5 years like HER2+ patients.


I'm focusing on my diet now. I'm looking to go more plant based and mediterranean. We all have our fingers crossed! :)

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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Jan 26, 2022 06:09PM notascalmasilook wrote:

homemom my MO is planning on 10 years of arimidex for me with concurrent verzenio for the first two years…

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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Jan 27, 2022 08:11PM homemom wrote:

NotAsCaSILook - I guess on second thought, maybe not. I know you can't be too careful, so I'm embracing it. I'll probably be terrified when it's 10 years and I have to go off of it.

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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Jan 27, 2022 08:38PM homemom wrote:

Juju-mar - I saw on another thread you mentioned that you got that lymphovenous bypass surgery. I am struggling with lymphedema and the only surgery I've heard about is the one where they take lymph nodes from another part of your body and transfer them which can cause lymphedema in that area, so I've forgotten about that idea.

What was your surgery like? I assume that you've not developed lymphedema since you're diagnosis and treatment was recently. It took almost two years for me to show any signs of lymphedema. It's a constant battle and I wonder if this would help

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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Jan 28, 2022 07:38AM juju-mar wrote:

HomeMom,

My lymphovenous bypass was done at the same time as the mastectomy. The plastic surgeon was only able to reroute 2 channels. I do not have lymphodema in my arm, but have some fluid that is hanging around in the chest and side area. I do see a PT for some cording in my underarm area and she has shown me how to help my lymph nodes drain. I wear a sleeve on my arm daily, I use an 8 chamber pump daily for an hour and as of yesterday started wearing a compression tube top (leftover from surgery) to help move the fluid out from my chest. I'm 9 months post op and for the most part feeling normal. I exercise daily and am beginning to lift some weights. My PT told me to keep moving. I'm sorry to hear you developed lymphodema 2 yrs out...

Juli

Dx 8/27/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/4 nodes, ER+/PR+, HER2- Chemotherapy 10/27/2020 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 6/14/2021 Whole breast: Breast, Lymph nodes
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Jan 28, 2022 12:25PM homemom wrote:

Juli I have always exercised. I walk about 3-4 miles most days and go to the gym. I just started trying weight lifting, I've been afraid to until now. My weight is good and I drink nothing but water all day. I like it so it isn't a problem. The only think I have a problem with is giving up my red wine on the weekend. I'm no lush, but I do like a couple of glasses on Friday night!


With all the nodes they took out of me it is hard to believe any surgery would help, but I should at least look into this.

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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Jan 28, 2022 06:00PM txlorelei wrote:

I met with my MO today, and as I expected, she wants me to start Verzenio after I finish radiation in 2 more weeks. She will start me on the lower dose to minimize side effects.

For those who have had diarrhea, how long did it take for it to become manageable?

Also, she mentioned that because it's an unusual drug, that many pharmacies don't stock it and have to send it through the mail. What has been your experience?

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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Jan 28, 2022 06:55PM notascalmasilook wrote:

Txlorelei

From my perspective, the diarrhea is a side effect onto itself! It took weeks…. Months… to find the right way to address it for me. If I miss a dose of meds, or am considerably late on a dose It stillhas huge ramifications. My blessing has been the COVID pandemic. Being able to work from home I'm literally outside my bathroom. Working in an office would not have been an option for at least 3/4 months. It is considerably worse in the morning.

As for delivery - mine are mail delivered. That's the best part. They are stupidly expensive. Even after insurance. But they have a program that'll cover the copay - so I pay nothing. (But they can still milk my insurance company)


For me - It's the idea that this drug severely reduces chance of recurrence. I can balance the crappy (pun intended) side effect in exchange for decent quality of life 2o+ hours a day

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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Jan 28, 2022 07:38PM mle42 wrote:

My MO also just prescribed verzenio, I'm planning to start it in a few weeks. I know it has to go through my insurance company's specialty pharmacy and I'm sure lots of pre-approval steps before that. I'm nervous about the SEs but motivated to make it work, and reduce my risk of recurrence. I'll be starting on the standard dose (150 mg) but my doc says we will reduce dose if necessary.

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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Jan 28, 2022 08:09PM juju-mar wrote:

I started at 150mg in November. The diarrhea was pretty severe at 6 weeks, so we dropped to 100mg twice a day. I had luck with Imodium a few times a week. I'm now only needing it maybe once a week or once every 10 days. The diarrhea is mostly gone. I haven't noticed any other side effects. I too work from home and am so glad for that. My insurance covers the cost. I only have a $10 copay. It's mailed to me every 2 weeks. You'll get blood draws every 2 weeks for the first 2 months, then monthly for another 2 months, then whatever your MO recommends. If we have to have BC, I'm so glad there are new treatment options.

Juli

Dx 8/27/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/4 nodes, ER+/PR+, HER2- Chemotherapy 10/27/2020 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 6/14/2021 Whole breast: Breast, Lymph nodes

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