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Topic: Abemaciclib Verzenio for Stage IV

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Posted on: Jan 1, 2018 05:03AM - edited Jun 18, 2018 12:19AM by zarovka

zarovka wrote:

Luckylegs and friends on Abemaciclib - I am bumping the Verzenio discussion in the hopes that more people have started abemaciclib. We need to get a community going. I have not started abemaciclib but it is on my short list. Like many I am very interested in how people do on this treatment do, both as a monotherapy and in combination with hormone suppression and other treatment. I am hoping that this thread can capture the experience of everyone on Abemaciclib in whatever combination. This is a very important treatment option that we all need to be evaluating.

I would expect more people on the drug given the significant advantages of abemaciclib over the first generation CDK 4/6 inhibitors. However, the FDA has approved abemaciclib for only limited indications. We have not established its use as a first line treatment nor as something to switch to from Ibrance. At the same time, they haven't made it clear that the drug can and should be used after Ibrance. As a result, the setting for using abemaciclib is supremely unclear.

I believe abemaciclib can be used either instead of or after palbo/ribo depending on whether you view abemiciclib as another class of drug or the same class of drug with significant improvement. One can make arguments for either strategy. If you've already done palbo/ribo, it is certainly worth trying abemaciclib. If you haven't done palbo/ribo, the current guideline that you start with the first generation CDK 4/6 is reasonable, but not necessary IMO. A lot depends on the side effect profile you can tolerate the best as the drugs have significant differences in side effects and also whether you are at risk of brain mets. Abemaciclib is better at crossing the blood brain barrier.

The following summary of abemaciclib data taken from a thread started by Constantine on Inspire. I moved his entire discussion from three posts because it's that good. Thank you Constantine.

ABEMACICLIB (VERZENIO)
Preliminary data from a phase I study of abemaciclib [SABCS 2014] in patients with five different tumor types including HR-positive metastatic breast cancer, with I note a median of seven prior systemic therapies (outliers out to 11 lines) found an objective response rate of 19% and a disease control rate (including stable disease (SD) under RECIST definition of >24 weeks of ) of 81% for HR-positive MBC patients. This Phase I study was expanded to evaluate abemaciclib plus fulvestrant in HR-positive MBC [ASCO 2014.] with patients having a median of four prior systemic therapies (and outliers out to the eight line), finding an objective response rate of 62% confirmed PRs.

A subsequent Phase I study [Tolaney et al, J Clin Oncol 2015;33(Suppl 1).] of abemaciclib in combination with different endocrine therapies for HR-positive MBC (median lines of treatment = 3, with outliers out to 8) demonstrated a disease control rate (CR + PR + SD) was 67% for those on abemaciclib + AI therapy, and 75% for those on abemaciclib + tamoxifen.

The phase II MONARCH-1 trial evaluated abemaciclib MONOTHERAPY in HR-positive, HER2-negative MBC patients with a median of 3 lines of prior therapy for advanced disease, including a median of 2 lines of chemotherapy (as opposed to endocrine or biological therapy) for advanced disease, yielding an objective response rate (ORR) of 17.4% and a clinical benefit rate (CBR) of 42.4%.

What's important to remember about MONARCH-1 is that many women in the study had already received multiple lines of endocrine treatment (median 3 - 5 previous lines in the metastatic setting, with outliers beyond that), developed resistance and were refractory to all of these treatments, AND progressed, many of whom also received chemotherapy, and these results were for MONOTHERAPY in a heavily pretreated population, which as I determined through examination of historical controls with any other agent achieves at best only 10 to 20% clinical benefit rates - half of that achieved by single-agent abemaciclib, and with responses of short duration.

Hence, the collective results of these trial, including MONARCH 1 (MONARCH-2 (with letrozole) and MONARCH-3 (with fulvestrant) are exceptionally exciting breakthrough in breast cancer therapeutics.

BREAKTHROUGH SURVIVAL
In addition, for me, the overall survival (OS) of these heavily pretreated MBC patients was 17 months, and that compares to historical control I review from all clinical trials to date, as significantly better than other survival results, which are usually are at best 13 months. Thus, consider that for the current champ, eribulin chemotherapy in this setting, the EMBRACE trial achieved a median overall survival (OS) was 13 months, we clearly have here a major advance and improvement in overall survival in the highly challenging later-line settings (past at least 3 lines of therapy).

HIGH TOLERABILITY
The major limiting constraint with all CDK4/6 inhibitors to date, like palbociclib (Ibrance), is their most common adverse effect, that of myelotoxicity via neutropenia (low WBC neutrophils), with palbociclib (Ibrance inducing some degree of neutropenia in over half of women on it, with associated dose interruptions and sometimes dose reductions, a toxicity that so fat from the available data seems to also afflict ribociclib.
But abemaciclib (Verzenio) evades a good deal of this because although strictly a CDK4/6 inhibitor, it is more specific in inhibiting CDK4, that is it is CDK4-selective, and myelotoxicity including neutropenia is primarily associated with CDK6, making the incidence of neutropenia on abemaciclib significantly lower and more manageable.

CLINICAL LESSONS ON ABEMACICLIB (VERZENIO)
And unlike palbociclib (Ibrance):

1. abemaciclib has strong single-agent activity in HR–positive MBC,
2. has durable response in later line settings,
3. a good tolerability profile with reduced neutropenia, and
4. to date the highest OS in these challenging heavily pretreated settings of any oncotherapeutic agent, whether endocrine therapy, chemotherapy, or biological therapy.

SOME NUANCES
1. The ESMO-reported MONARCH 3 Trial found an response rate of 48.2% for all patients, BUT for the subgroup of patients with measurable disease, a response rate (ORR) of 59.2%, these being the highest ever response rates achieved to date for ANY endocrine therapy in breast cancer.
2. And although data needs to mature further for survival outcomes, it is anticipated based on exploratory analyses that PFS will weigh in at an improvement of close to 12 months, again an extraordinary gain.
3. In addition, Verzenio was most effective in challenging populations like those with visceral metastases (especially liver) and those with rapidly recurrent (short disease-free-interval (DFS)) patients.
4. Finally, 16 patients across two of the three MONARCH trials were NED (complete response (CR)), likely to increase once the MONARCH-3 data matures, more still I anticipate when results are reported from the MONARCH PLUS and other trials.

DIARRHEA AND ITS MANAGEMENT
To put the adverse events into a bit of perspective, although it is true that with Verzenio, all-grade diarrhea was between 86 - 90%, yet serious (Grade 3+) incidence was 13 - 20% but this is aggregated across the trials, and note further that diarrhea incidence is concentrated during the first month, and more narrowly the MTO (median time to onset) of the first diarrhea event was 6 days, lasting a median duration of just 6 days for Grade 3. Furthermore, for the most recent MONARCH-3 RCT, grade 4 diarrhea was zero, and grade 3 diarrhea was just 9.5%.

An aggressive proactive regimen of:

- high-dose loperamide/Imodium (4 mg but NOT ever de-escalated down to 2mg (and up to 16 -32 mg daily);
- "Big Pink" (Petpto Bismol Extra Strength) used in "priming" mode (started on day 4 and also used for immediate relief during loperamide dosing;
- budesonide (Symbicort) for recalcitrant cases;
PLUS "adjunct interventions:
- high-dose probiotic (28 billion microorganism count in two divided doses), and
- electrolyte powder (most of the refractory diarrhea was analyzed to be secondary to disturbed microflora and electrolyte imbalances)
- at least 12 8 oz glasses of fluid daily, 8 of which should be electrolyte-enhanced

brought the rate of diarrhea-related drug omission or dose reduction down from 22% (MONARCH 1 and 2) to under 1 - 2% in the cohorts run by my research teams in India and the Middle East.
NOTE: We found that the adjunct interventions of Big Pink, high-dose probiotic, electrolyte rebalancing, and assured fluid intake were at least important as the conventional agents, and in cases that seem intractable, converted to success, given that therapy-driven diarrhea inevitably causes GI tract flora, and electrolyte, imbalances, aggravated by inadequate hydration. Also critical was "through-and-through" loperamide dosing: 4 mg at each episode, but NOT de-escalating - as current protocols do - down to 2 mg after first (that de-escalation regimen we found indifferently effective, with large numbers of failures.

And although not reported to date, I note that in the MONARCH 3 trials the incidence of ANY grade diarrhea dropped to just 2% (courtesy of data provided by Levi Garraway at Lilly).

ACTIVITY IN LOBULAR CARCINOMA
The trials largely fail to report to date differential invasive-type stats, but the impression from conversations with some principals is that lobular breast cancer subjects are unlikely to experience significant decrement, and I also extrapolate from some hints surrounding the PELOPS (Palbociclib and Endocrine Therapy for LObular Breast Cancer Preoperative Study) Trial another CDK4/6 inhibitor palbociclib (Ibrance), as well as from some molecular considerations (the p27 gene is a key regulator of certain types of progression (G1 to S-phase) and it appears that lobular carcinomas tend to have higher p27 which in a complex way under contextual effects can have either positive or negative effects on phase progression), but we have to await sub-group analysis to report on this issue explicitly. I am cautiously confidant of little differential outcome, which I think may be confirmed across the general class of CDK inhibitors. In addition, both the lobular and the ductal groups appear to have benefited from the addition of palbociclib (Ibrance) in the PALOMA-/TRIO-18 Trial, but I note that the difference observed in PFS in that trial is likely to be an artificial artifact of the small patient in the subgroup with lobular carcinoma arm (n = 18/19) compared to n = 117 in the ductal subgroup, so this is a small sample size effect not a robust finding, an impression in agreement with that of the principal investigators (Richard Finn and UCLA and colleagues). As we learn more about lobular BC and abemaciclib in particular, I will offer further clarifications.

DEGREE OF DIFFERENCE - IBRANCE v VERZENIO
Given the dramatic 14-fold (!) greater CDK4 activity in abemaciclib (Verzenio) compared to palbociclib (Ibrance) and ribociclib (Kisqali), as MONARCH 3 lead author Angelo Di Leo has established and noted in interview, and other consequent fundamental molecular pathway differences, I view these as only shared-class (CDK), but therapeutically distinct, agents, more like the difference between third-generation capecitabine (Xeloda) versus first-generation 5-FU although these are both fluoropyrimidines.

So: More different than same as witness also the high degree of relative invariance of efficacy and durable response in later-line treatments for Verzenio compared to that of Ibrance (see my original posting, above). These differences are sufficient warrant for me to classify palbociclib (Ibrance) as a first-generation CDK inhibitor, and abemaciclib (Verzenio) as a second-generation CDK inhibitor. The devil - as always - is in the details.

CNS (BRAIN) ACTIVITY
We have preclinical data [Raub et al. Drug Metab Dispos. 2015] of the cross-BBB (blood-brain barrier) capability of Verzenio, as witness the remarkable benefit in GBM (glioblastoma, being even non-inferior to temozolomide (TMZ), the standard of care in cross-BBB activity, and this although not a human clinical, was an in vivo, not just in vitro, study. And the Dana-Farber JPBO human clinical trial (I3Y-MC-JPBO) under Sara Tolaney is investigating single-agent abemaciclib in patients with ER+/HER2+ brain metastases, where I fully expect clinically relevant CNS benefit to be confirmed, with first phase interim results reported in June at ASCO 2017 showing 2 patients (8.7%) out of 23 having confirmed partial response (PR).

I should point out that there has been some provisional data on palbociclib (Ibrance) having potential cross-BBB activity in brain metastasis, but I hasten to note that strong in vivo data show a 10-fold greater cross-BBB activity for abemaciclib than palbociclib, with abemaciclib brain levels being more efficient at substantially lower doses than palbociclib and also active for longer duration, and finally abemaciclib was active as monotherapy, palbociclib was not.

Finally, as to leptomeningeal metastases, no explicit data bears on this question directly, but as to date all agents active in brain metastases have also been active in leptomeningeal metastases, activity would be expected.

THE ISSUE OF SWITCHING
It remains an open question whether patients who have progressed on or after another CDK inhibitor like palbociclib (Ibrance) may derive significant benefit from continuance of CDK4/6 inhibition by using a following CDK inhibitor like abemaciclib (Verzenio), with many in-progress trials like TRINITI-120 (and NCT0185719319 and NCT0263204521, among others) exploring the issue. But there is some plausible extrapolation from some preclinical data which has suggested non–cross-resistance among CDK4/6 inhibitors. A Barts Cancer Institute study reported at SABCS 2016 found that some palbociclib(Ibrance)- and ribociclib(Kisqali)-resistant cell clones were sensitive to abemaciclib (Verzenio).

For patients now on Ibrance (or Kisqali) but who have NOT PROGRESSED , is it motivated to switch to abemaciclib (Verzenio)? This is an issue that needs to be thrashed about candidly with your oncology team and is a highly individual decision, but my own sense at this time is that it may be more optimal in the long run to stay the course, and consider abemaciclib (Verzenio) for recourse upon progression either off-label until the FDA expands its approval, or on one of the many abemaciclib (Verzenio) clinical trials available.

I would however entertain some specialized exceptions in which a switch now, off of Ibrance or Kisqali, onto abemaciclib (Verzenio), might be motivated; for example:

1. If a patient is experiencing repeated difficult-to-manage neutropenia, occasioning multiple drug interruptions or reductions (neutropenia being dramatically less with abemaciclib (Verzenio)), but the patient must weigh the associated countervailing issue of higher incidence - but still manageable I would argue - diarrhea on abemaciclib (Verzenio).
2. If a patient is in advanced later-line setting (say, more than 5 to 7 lines or so of treatment in the metastatic setting already completed), where it is suspected that abemaciclib (Verzenio) may be somewhat more consistent and durable in response and benefit in such challenging contexts. This is a difficult one to judgment-call, and I would tend to want to weigh each patient's circumstance and their complex treatment history and individual pathology to assist in the decision, since we have no hard data to be dispositive on this decision.

Yes, these are arguable and have to be intensively debated (as in a tumor board setting), but they are not wholly unreasonable. Outside of these exceptions, however, I do not see sufficient motivation to prematurely abandon Ibrance or Kisqali, as these have strong track records of efficacy and should be push to progression.

FDA APPROVAL

Abemaciclib is currently approved ...
1. as combination therapy with fulvestrant (Faslodex) for the treatment of women with HR+/HER2- advanced or metastatic breast cancer who experience disease progression AFTER ENDOCRINE therapy.

2. as monotherapy for the treatment of women with HR+/HER2- advanced or metastatic breast cancer who experience disease progression AFTER ENDOCRINE therapy AND prior CHEMOTHERAPY in the metastatic setting.

(Z) MO's have latitude to prescribe outside of these indications and there are strong arguments for doing so. My MO appears to have wide latitude to prescribe Abemaciclib and get insurance approval in other settings.

EXPANDED ACCESS:
Abemaciclib continues to be available through Lilly's attractive Expanded Access Program (EAP):
https://clinicaltrials.gov/ct2/show/NCT02792725?term=abemaciclib&rank=24
which is active and recruiting currently in several US locations (California, Florida, Minnesota, Missouri, Texas, and West Virginia), more being added. However that is for patients who have not as yet progressed on a previous CDK inhibitor like palbociclib (Ibrance), that is, for "switchers" who may want to explore the improved benefits of abemaciclib (Verzenio) over Ibrance (assuming the patient meet the other trial criteria); but not for patients who have already progressed on Ibrance.

RECHALLENGE

In several cases I have known, I counseled that although someone progressed on Ibrance, to reintroduce it after a hiatus of 3 - 6 months, and in many cases this washout appeared to resensitize the tumor cells to Ibrance, which upon re-introduction was newly effective. It is a variant of a trick I have counseled and seen working not infrequently with other agents like capecitabine (Xeloda) where after progression on it, I advised a trial on a new metronomic schedule (low-dose, continuous, daily, capecitabine) and seen again it newly effective despite previous progression, just by this shift I schedule (there is some provisional data for this, but not decisive). But these are beyond convention and reserved for highly special circumstances.

MARKERS THAT PREDICT RESPONSE TO CDK 4/6 INHIBITION
I am not convinced that there is any biomarker - protein or otherwise - that reliably identifies responsivity to CDK inhibitors, and Fabrice Andre of the Institut Gustave Roussy and colleagues, as reported in their presentation at ASCO 2017, were unable to identify any such biomarkers of response: neither Rb levels, p16 protein levels, Ki-67 cell proliferation, CDKN2A, CCND1, nor even ESR1 gene expression, all the usual suspects, and others, had any response-predictive value whatsoever. To date the only established biomarker for response to CDK4/6 inhibitors, remain hormone receptor positivity (HR+). Of course not everyone responds, but response rates remain historical high - and higher than any other treatment to date - and as long as one is HR+, one has the potential to benefit from a CDK inhibitor.

Constantine Kaniklidis
Director, Medical Research, No Surrender Breast Cancer Foundation (NSBCF)
Oncology Reviewer, Current Oncology [journal]
Society for Integrative Oncology (SIO)
Member, European Association for Cancer Research (EACR)

Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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Aug 10, 2021 12:32PM SeeQ wrote:

Prairiesea - the documention says the big D usually starts between day 6 and 8, and mine was right on time. I believe I double dosed immodium (per MO and specialty pharmacy instructions) multiple times in the first few days. Urgency was an issue and was slightly preceded by cramping. Metamucil helped, but don't take it too close to the Verzenio - and it's available in capsules and 'thins' (like a very dry chocolate cookie) without aspartame. The situation improved a little over time. Then, after about a year it got much worse again ( bouts that lasted 3-4 days with immodium not helping much). I requested a dose reduction and it helped tremendously. Prophylactic use of Imodium - the MO recommended it. You can use the liquid form to fine tune your dosage, if you need to (and I wonder if it works faster?). Now, I just take it prohpylactically occasionally (e.g. long car trips) and it works. As others have said, some people don't have any problem, some people have a worse problem. I would advise being prepared for the worst and hope you don't need it.

Diagnosed de novo Stage IV; numerous liver mets; single small breast tumor identified 4 weeks later Dx 6/2/2020, IDC, 6cm+, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 7/2/2020 Arimidex (anastrozole) Targeted Therapy 7/9/2020 Verzenio
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Aug 10, 2021 12:46PM SeeQ wrote:

nnc - "I was curious if any of you know if there is skin, hair and nail fragileness and dryness, if any changes in perineum skin irritation." Yes, yes, and yes. :( I think I've lost 1/2 to 2/3 of my hair and what's left is dry and frazzly. My nails are bad (ridgy and dry), but they do better if I keep them moisturized. I tried the cuticle cream (can't remember the name, except that it has 'hoof' in it), but I couldn't tolerate the cocunut smell. I use Nivea Creme.

I blame most of the joint pain on the anastrazole - but I don't see that in your profile.

Re: alcohol - I asked my MO about this, especially with regard to liver mets. He said while some might say no, his approach is to try to maintain quality of life the same as it was as much as possible - so, an occasional beer/wine, or two, is okay. I haven't seen anything that says alochol is contraindicated for Verzenio.

Diagnosed de novo Stage IV; numerous liver mets; single small breast tumor identified 4 weeks later Dx 6/2/2020, IDC, 6cm+, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 7/2/2020 Arimidex (anastrozole) Targeted Therapy 7/9/2020 Verzenio
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Aug 10, 2021 04:04PM Loriwithgod wrote:

I started taking Verzenio along with Femara when I was first diagnosed with stage IV in October of 2020, age 55. I was tired at the beginning but feel pretty much myself now. I workout about 2 hours every morning, socialize and host a lot of parties. I poop out at parties earlier than I used to but no big deal. ...speaking of poop...my diarrhea is continuing to be a problem but improving. I have had a few actual accidents not making it to the bathroom, missed some morning engagements because i was not ready to leave the house, and felt fatigued due to water loss. It is really my only symptom of my cancer battle. My Dr prescribed Diphenoxylate for the diarrhea. This has helped a bit but not totally. In general my life is back to normal. Just some loose stools in the morning but improved. The Verzenio and Femara are working remarkably. My cancer markers were cut in half every month and now down to 13. Liver mets are gone and lung and bone mets have shrunk significantly. I don't want to change meds because these seem to be working so well.

Dx 3/2016, IDC, Right, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 10/2020, IDC, Right, Stage IV, metastasized to bone/liver/lungs/other, ER+/PR+, HER2- Surgery Lumpectomy; Lymph node removal: Underarm/Axillary Chemotherapy
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Aug 11, 2021 08:15AM nnc wrote:

Thanks SeeQ for the helpful reply! I lost all my hair from Taxol treatment and then started Verzenio so hair is sparse and no eyebrows or eyelashes but make-up works wonders on my eyes and wear hats rather than wigs most of the time. I've tried the nail hoof product and CND solar oil nail treatment but my nails are still fragile . I am grateful that I have survived 9 years with metastatic cancer. Verzenio is way better than Taxol regarding quality of life, so as others on this blog have mentioned, I am glad it is keeping the cancer in check and is allowing me to live a fairly "normal" life. I just turned 70 which was a goal I set for myself so now I have to change the marker up to 75!

Dx 1985, DCIS, Left, Stage 0 Dx 1998, Right, Grade 2, ER+ Dx 8/2012, Stage IV, metastasized to bone/other, PR-, HER2- Hormonal Therapy 8/25/2012 Femara (letrozole) Hormonal Therapy 7/1/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/20/2015 Faslodex (fulvestrant) Targeted Therapy 7/20/2015 Hormonal Therapy 1/1/2017 Aromasin (exemestane) Radiation Therapy 2/1/2017 External: Lymph nodes Targeted Therapy 3/1/2017 Afinitor (everolimus) Radiation Therapy 10/18/2017 External: Bone Chemotherapy 9/1/2018 Taxol (paclitaxel) Targeted Therapy Verzenio
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Aug 11, 2021 09:31AM prairiesea wrote:

Thanks SeeQ.....and Loriwithgod and nnc for your good news, as well as ideas for SEs, about Verzenio. Came at exactly the right time as yesterday I had a flurry of calls from Oral Chemo nurse and pharmacy from whom I'll be getting Verzenio delivered Thursday. By then I'll arm myself with Immodium (I think they send that too, though), metamucil, probiotics and electrolytes and hope that all works. Definitely if this can knock back the cancer that has ravaged my bones I'll be very grateful whatever the SEs...... I'm sure I'll be back for more uplifting moral support, so appreciated. Happy for all of you to hear about your nearly normal lives, that's great.....on to new age goals!

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Aug 11, 2021 10:37AM SeeQ wrote:

nnc - yes, while I'm sad to have lost volume in my hair, I'm happy to still have what I do. My eyebrows and lashes also thinned, but a make up pencil fixes that! :) Nine years is great - keep that roll going!!

Diagnosed de novo Stage IV; numerous liver mets; single small breast tumor identified 4 weeks later Dx 6/2/2020, IDC, 6cm+, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 7/2/2020 Arimidex (anastrozole) Targeted Therapy 7/9/2020 Verzenio
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Aug 11, 2021 10:58AM star2017 wrote:

The diarrhea has hit now, but it's manageable (I'm on day 8). I haven't had to take anything, but I feel the stomach discomfort and head to the bathroom just in case. Usually it's a false alarm, but yesterday and today I've had to go twice.

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/16/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/28/2017 AC + T (Taxol) Surgery 4/17/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy 6/18/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio
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Aug 12, 2021 10:53AM - edited Aug 12, 2021 12:14PM by star2017

Hi all,

For those of you taking 150mg who had diarrhea that was manageable with Imodium, did you stick with the 150 or drop the dose in the hopes of reducing the diarrhea and Imodium use?


Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/16/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/28/2017 AC + T (Taxol) Surgery 4/17/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy 6/18/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio
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Aug 12, 2021 11:30AM Husband11 wrote:

Good news. My wife just finished another blood test and all markers continue to improve. Lower liver enzymes, lower tumor markers, and for the first time in years, her hemoglobin is in the normal range. She continues with her unauthorized modification to her prescription by taking Verzenio 150 mg 2x one day, 1X the next, along with exemestane and (unauthorized) enobosarm 9mg daily.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Aug 12, 2021 12:02PM SeeQ wrote:

Husband11 - great news!!

Diagnosed de novo Stage IV; numerous liver mets; single small breast tumor identified 4 weeks later Dx 6/2/2020, IDC, 6cm+, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 7/2/2020 Arimidex (anastrozole) Targeted Therapy 7/9/2020 Verzenio
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Aug 12, 2021 04:28PM SusaninSF wrote:

So happy for you and your wife, Husband11!

Mets to brain, lung, liver, eye, femur bone. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin)
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Aug 13, 2021 12:18AM Kabuki wrote:

Does anybody have nausea and vomiting with Verzenio? I have had 4 episodes of nausea and vomiting this past week. I'm just finishing up week four. I have some minor abdominal pain on my right side and my oncologist thought that this is diverticulitis. He didn't seem to think that the Verzenio is causing the vomiting.

He thinks that the diarrhea has caused diverticulitis and that I may have to go off the Verzenio for a few days and go to the hospital for antibiotics.

I just started the Verzenio and my liver is covered with mets. Too many to count and the largest is 10 cm. I really don't want to stop treatment. This really sucks.

Dx 6/2009, IDC, Left, 6cm+, Stage IIIC, Grade 2, 3/7 nodes, ER+/PR+, HER2- (IHC) Dx 7/2021, IDC, Left, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- (IHC) Targeted Therapy Verzenio Radiation Therapy Surgery Mastectomy: Left; Reconstruction (left): DIEP flap Chemotherapy AC + T (Taxol)
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Aug 13, 2021 01:16AM SusaninSF wrote:

Kabuki,

I have never heard of nausea and vomiting with Verzenio but it may be a rare SE. Diverticulitis is easily diagnosed with a colonoscopy. Perhaps you could get a colonoscopy before stopping Verzenio.

Sorry to hear about your liver situation. Any discussion of getting Y90? Maybe the women on the liver thread would have some ideas.

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin)
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Aug 13, 2021 01:24AM Kabuki wrote:

Thanks for responding, Susan. The Pet scan did show diverticulitis. I think that I have too many mets for Y90.

Dx 6/2009, IDC, Left, 6cm+, Stage IIIC, Grade 2, 3/7 nodes, ER+/PR+, HER2- (IHC) Dx 7/2021, IDC, Left, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- (IHC) Targeted Therapy Verzenio Radiation Therapy Surgery Mastectomy: Left; Reconstruction (left): DIEP flap Chemotherapy AC + T (Taxol)
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Aug 13, 2021 01:28AM - edited Aug 13, 2021 01:28AM by Kabuki

My oncologist did say that he could lower the dose or switch to Ibrance but I don't want to do either being only in the 4th week. He did mention that Verenzio has a slight increase of tumor response compared to the other two and that he prefers Verzenio.

Dx 6/2009, IDC, Left, 6cm+, Stage IIIC, Grade 2, 3/7 nodes, ER+/PR+, HER2- (IHC) Dx 7/2021, IDC, Left, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- (IHC) Targeted Therapy Verzenio Radiation Therapy Surgery Mastectomy: Left; Reconstruction (left): DIEP flap Chemotherapy AC + T (Taxol)
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Aug 13, 2021 01:43AM SusaninSF wrote:

Kabuki,

Did the scan show that you have infected diverticulitis? Uninfected diverticulitis shouldn't be treated with antibiotics. If you do have infected diverticulitis you should take antibiotics ASAP. My Mom almost died from infected diverticulitis and ended up with a colostomy bag for a year.

More hugs, Susan

Mets to brain, lung, liver, eye, femur bone. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin)
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Aug 13, 2021 01:52AM SeeQ wrote:

Kabuki - I didn't have nausea, but I had strong food aversion and zero appetite (both of which improved over time). I know there have been others in this thread with nausea, and I'm thinking most ended up trying a dose reduction? You might read through some of the earlier pages (a couple references to it on p.59)

I can't remember if I said this before, and I apologize if I'm repeating myself. I started with an MRI showing an 11.8 cm mass and numerous other mets in my liver. My GE said "pretty much the whole liver" but right lobe only. Verzenio got me to NED in 7 1/2 months. Each drug works differently in different people, but that's my experience.

Worth noting - my tumor markers spiked (quadrupled) after a month of treatment and took a 2-3 months to start dropping, but my first follow up PET-CT showed great response.

Re: local treatment, I was not a candidate for microwave ablation due to tumor size. About the time I was pushing harder for y90 consideration, I reached NED.

Diagnosed de novo Stage IV; numerous liver mets; single small breast tumor identified 4 weeks later Dx 6/2/2020, IDC, 6cm+, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 7/2/2020 Arimidex (anastrozole) Targeted Therapy 7/9/2020 Verzenio
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Aug 13, 2021 04:21AM star2017 wrote:

Nausea is listed as a side effect of Verzenio. I had mild nausea in the first few days I took it, but it went away on its own. I hope yours eases.


All, the diarrhea has picked up for me. I really don't want to take Imodium every day. Did those of you who experienced diarrhea reduce your dose or just live with it? I'm scared to reduce my dose but feeling pretty weak and miserable from the diarrhea.


Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/16/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/28/2017 AC + T (Taxol) Surgery 4/17/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy 6/18/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio
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Aug 13, 2021 09:05AM Husband11 wrote:

My wife gets nausea from Verzenio. They have her on a drug that she takes from time to time when it happens. I can ask her if you would like.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Aug 13, 2021 10:19AM prairiesea wrote:

Star, I'm really sorry to hear that you are suffering so much from diarrhea. I can't answer your question; I just took my first pill so don't know how it will affect me yet. I hope others do answer. I would just say that a) the nurse who did my teaching-session on Verzenio said definitely let them know if I was having to take immodium all the time (like toward the 8 maxiumum of the prescription dosage), they would want to consider a dosage change then and b) there are a number of other recommendations in this thread to try, both in the header original post and from other participants in the thread, like metamucil, which seems to work better for some than immodium, probiotics, electrolytes to improve your needed minerals while you have diarrhea. I'm planning to stock up on all of these today. Might be worth a try and make you feel better and be able to take less immodium? I do hope it gets better.

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Aug 13, 2021 01:03PM Sadiesservant wrote:

Kabuki, I'm no longer on Verzenio but had terrible nausea when I first started, to the point that I was finding it impossible to eat or drink anything. I did vomit once or twice as well. I was on the highest dose so had a dose reduction which took care of it. I knew there was no way I would be able to carry on if I stuck with the full dose since it's not like chemo where you at least get a break between cycles. (I was part of a marketing research survey for Verzenio before it came out and laughed at their promotion of the fact that you could take it every day. Not sure why that is a plus!)

Star, don't be afraid of dose reductions. I had several and got 15 months out of Verzenio/Faslodex after being on Faslodex alone for almost two years. In my case it was the nausea and then my creatinine levels started going up too much. The doses they set are based on the maximum that patients can tolerate often and not the dose required to control the disease. Bestbird has recently been involved in a study about this. Physicians have a tendency to start at the strongest dose which may not be required for efficacy or the best from a patient quality of life perspective.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine)
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Aug 13, 2021 01:21PM star2017 wrote:

Thanks, all. Today's been better so hoping I can manage. My mo is usually very responsive but hasn't responded to my questions about my side effects. I know she's out of town next week (and maybe this week too), but I figured someone from her team would check in. They are usually very quick to reply. I'll give them a call today with an update and ask for recommendations, since we're going into a weekend.


Not sure why today is better, but I was more deliberate today about taking this on an empty stomach and waiting at least n hour to eat. Maybe that's helped.

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/16/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/28/2017 AC + T (Taxol) Surgery 4/17/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy 6/18/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio
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Aug 14, 2021 10:11AM Spouse4Life wrote:

That is great news Husband.

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Aug 14, 2021 08:19PM ChathamLady wrote:

I’m sure it’s been asked and answered before but I haven’t had any luck searching so please forgive me for asking again

how long have you been on / we’re on Verzenio before it failed you?

What was next.

I’ve been on it 6 mos. 150 mg 2x a day. Managing the side effects.

Thanks in advance

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Aug 14, 2021 08:45PM Sadiesservant wrote:

Hi Chatham, as I mentioned above, 15 months for me but I was heavily pretreated on hormone related treatments. I know there are others who got much more time.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine)
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Aug 15, 2021 08:20AM ChathamLady wrote:

Thank you for quick reply. Prayers for you!

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Aug 15, 2021 02:27PM Kabuki wrote:

Thank you all for your responses. The nausea and light headedness were so bad the past 2 days that I could only lay on the couch. Even reading gave me headaches. I may ask for a dose reduction. I am only hesitant bacause of the extensive liver mets. I get my first scan in 2 weeks so I think that I will hold off.

SusaninSF, The Cat scan showed diverticulitis but it did not elaberate as to where it was located. I have not had a fever and just mild abdominal pain. The pain was the only symptom. My oncologist said to watch for a fever. I guess a fever would be a tell tale sign of infection. I never had intestinal problems before this.

It does seem like I have more nausea and vomiting than the average patient taking Verzenio. I have always been very sensitive to meds and usually function on the lowest dose. Nausea and Vomiting is a common side effect for me. I cannot handle any of the opiate family meds. Even vicodin and codeine will make me severely nauseous.

As for Y90, I am newly diagnosed (4 weeks ago) with extensive liver mets so I think that Verenzio is the first protocol treatment. Dr Melisko did say that treatments would pretty much be the same wherever I go as oncologists all pretty much follow the same protocol.

Husband 11, Yes, I would be interested in what your wife takes for nausea. Thank you. I take Zofran. It works about 50 percent of the time.

SeeQ, I am so happy for you that you were able to acheive NED with Verenzio. You give me hope. May you have many more years!

Sadiesservant, That commercial is weird. Unlike the others you can take Verenzio every day! Yep, just what we want....more pills to take. Non of the Verenzio commercials show the actors running for the toilet. Now that would be more realistic.

The 2020 commercial is better. It states that Verenzio is the only one of its kind that helps you live significantly longer when taken with fulvestrant. So it's claiming that it's superior when compared to the other two on overall survival.

Star2017, After 4 weeks the diarrhea is not as severe but I still have problems with it. My oncologist has prescribed Lomital which works but is the opposite end of the spectrum as it will constipate me for 2 days.


Dx 6/2009, IDC, Left, 6cm+, Stage IIIC, Grade 2, 3/7 nodes, ER+/PR+, HER2- (IHC) Dx 7/2021, IDC, Left, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- (IHC) Targeted Therapy Verzenio Radiation Therapy Surgery Mastectomy: Left; Reconstruction (left): DIEP flap Chemotherapy AC + T (Taxol)
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Aug 15, 2021 08:43PM emac877 wrote:

Hi ChathamLady - I have been on Verzenio for 21 months now. I started it with faslodex shots, switched this past February to exemestane but went back to faslodex because I found the exemestane side effects intolerable. I was declared NED on the Verzenio in May of this year so I am hoping to get a longer run on it.

I can't remember who asked but I have stayed on the 150 mg dose since the beginning. I did not get debilitating diarrhea but have always had a few intermittent bouts. I have noticed the last six months or so I seem to have more sensitive bowels than before Verzenio. It hits a bit more frequently now with very little diet change overall.

Dx 2/8/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/22/2018 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Chemotherapy 6/8/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/26/2018 Whole-breast: Breast, Chest wall Dx 12/4/2019, IDC, Stage IV, metastasized to bone Radiation Therapy 12/23/2019 External: Bone Surgery 12/31/2019 Hormonal Therapy 1/6/2020 Faslodex (fulvestrant) Targeted Therapy 1/7/2020 Verzenio Hormonal Therapy 12/9/2020 Aromasin (exemestane) Hormonal Therapy 6/23/2021 Faslodex (fulvestrant)
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Aug 16, 2021 08:43AM kaufmanscsi wrote:

Wonderful news!

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Aug 16, 2021 03:22PM Loriwithgod wrote:

There are several people I want to reply to but will put it all in one response. I have been on verzenio(150 mg 2x a day) Since Oct 2020. Felt Fatigue and Diarrhea at the beginning. Fatigue is gone but Diarrhea is still a problem. I feel like at least once a week it was like a colonoscopy prep...REALLY bad. Even had a few accidents when I couldn't make it to the bathroom. My oncologist prescribed Diphanoxylate 3 pills each is .25 mg. That has been some help. What has surprised me is the hair issue. I thought since I had been on Verzenio for 10 months with no problems I had dodged that bullet. Well just in the last couple of months my hair on the side of my head has gotten kinky (I have really short hair...maybe an inch long on the sides at the most). I also have a patch that is uncomfortable when touched. Now I think I am noticing it slightly falling out. I did not mind being bald at all when I had chemo but the idea of my hair thinning really bothers me...actually more than anything else I have dealt with. Curious if anyone else experienced their hair getting curly before falling out.

Also as far as the alcohol issue. My doc said for me to just live life as normally as possible. I have 2 glasses of wine every night and sometimes 3 at social events. I love to host parties and have 10-20 people over for dinner about 4-6 times a year! I have liver mets. So far the alcohol does not seem to have any negative effects on anything. Actually my liver mets are now undetectable.

Dx 3/2016, IDC, Right, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 10/2020, IDC, Right, Stage IV, metastasized to bone/liver/lungs/other, ER+/PR+, HER2- Surgery Lumpectomy; Lymph node removal: Underarm/Axillary Chemotherapy

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