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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 16, 2021 04:20PM emac877 wrote:

Lori - the hair challenges have been the hardest on me emotionally. I had long curly hair going into cancer. Post taxol I was completely bald. It has grown back curly but since being on Verzenio and hormone therapy I have become very thin at the top and that area grew back straighter, frizzier with more of a wave than a curl. This got significantly worse when I combined Verzenio and exemestane. It's not quite as bad with Verzenio and Faslodex injections. I am accustomed to curly hair and it's challenges but what has been the most difficult is that striaghter, frizzy wave at the top. My sides are as curly as they every were so that has created some interesting styling challenges.

I've spent probably hundreds on various products claiming to reduce frizz or regrow hair. To be honest, I've seen very little difference that any of them have made. I had cut my hair short like yours thinking it would be easier but it's not for me, particularly with the top more straight and frizzy so I am in the arduous process of growing it out. I am taking Viviscal Pro for that because I do seem to notice faster growth on that. End goal is to be able to pull it back in a short pony or top bun and try to hide the thin area.

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 05:40PM kaufmanscsi wrote:

Hi all. I've been on Verzenio for 2 weeks now for liver mets (also got Y90 about 3 weeks ago) and I just feel miserable. Intense fatigue, diarrhea, nausea and no appetite. After I eat, I feel worse. My MO is reducing dose to 150 in am and 100 in pm. I still feel like it's too much. I'm getting depressed and feel like I'm stuck between a rock and a hard place. Can anyone tell me "it gets better"? BTW, I've had stage 4 for 13 years and I've been on every drug under the sun...especially for HER2+ targeted drugs. Most recent biopsy showed it changed to HER2-. Thanks for any hope you can offer.

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Aug 16, 2021 05:46PM kaufmanscsi wrote:

Loriwithgod -

You give me hope. I just started on Verzenio and can't even walk down the block let alone work out. I'm pretty depressed with my side effects and I'm isolating. I just asked for a dose reduction and even though it's small, thinking it might help? Thanks for your inspiration.

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Aug 17, 2021 07:43AM - edited Aug 17, 2021 08:20AM by star2017

kaufmanscsi -- I'm sorry that Verzenio has hit so hard. I'm just a couple days behind you (day 14 today). The diarrhea hit about 6 days in and has gotten progressively worse, except for day 10, which was magically totally fine, and I can't figure out what I did differently that day (except that I had taken the Imodium the evening before). Imodium does help me, but I don't want to take it daily and there's still a lot of stomach pain. Perhaps it's unrealistic to try to go through treatment without some daily dose of GI meds. My energy level is lower too, and I'm definitely worried about the school year starting (I'm a teacher and parent of young kids). It's just going to be a much more demanding schedule. Part of me hopes being busy and on a stricter routine will help, but I'm definitely worried about the GI issues hitting at inopportune times. I go in for bloodwork tomorrow. If all is well, I may try to stick it out for a few more weeks before asking for a dose reduction. Let's see what the doctor says. I don't know how I can do this daily. I hope the dose reduction, tho small, makes a difference for you. Please keep us posted.

Loriwithgod -- I only started Verzenio recently, so I haven't experienced the hair thinning yet, but I do remember that same discomfort when my hair fell from chemo. I hope that the hairloss isn't too bothersome, and that the hair regrows. Your photo is stunning; I am sure you look lovely. Don't hesitate to bring up your concerns with the doctor. Maybe s/he can point you to a nutritionist or product that would help too.

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 17, 2021 11:34AM prairiesea wrote:

Kaufmanscsi and Star, so sorry to hear about your struggles with Verzenio.... I definitely relate to the teacher worries, Star. I start teaching college clases next week. Fortunately from home....I'd be even more worried if I had to be in person, so I hope you are able to manage. I'm only on day 5, no serious GI issues yet. But, has anyone experienced rashes or hives? Small outbreak on upper chest this morning, itching when I woke up. Seem to be relieved by topical Benadryl but am concerned if they get worse. I stopped taking the probiotic capsule I had started a few days ago to try to ward of diarrhea, to see if that's it. Wondering if I should be calling clinic for so minor a rash or wait and see.

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Aug 17, 2021 11:46AM - edited Aug 17, 2021 11:51AM by ChathamLady

Thank you. I've been on verzenio for 6 months. Diarrhea under control for the most part with diet but still proactively take immodium if I'm going to out for awhile. Definitely hair thinning. Biotin slowed it down already - also use nioxin shampoo which helps. Growing back but very slowly and like a Brillo pad. If it keeps mt stable though I'll take it! Best of luck to everyone on this drug. Stay strong

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Aug 17, 2021 11:54AM Kabuki wrote:

I'm in my 5th week. The diarrhea did get better for me, however, I still have it. I found prescription Lomital to help much better than Immodium especially with the cramping.

The big problem I have with Lomital is that it is a narcotic and it zaps all the energy out of me. And these days I don't have much energy. But, I am able to eat fruits and vegetables with Lomital which I couldnt with Immodium.

The first 3 weeks were unbearable. Even water turned into diarrhea. I was miserable and it was a full time job trying to keep myself hydrated.

The diarrhea would start in the morning shortly after my first dose of Verenzio so I started taking the doses at 12pm and 12am. That way I can go out and get stuff done without having to worry about severe cramping and needing to find a bathroom when I'm away from home.

I also have problems with nausea and vomiting. The vomiting was every night around the same time. Now I'm frequently nauseous but only vomit about 3 times a week.

I feel very weak and am not able to stand for long periods of a time due to severe light headedness. I don't know if it's the Verenzio or tumor load. My oncologist thinks it's because of malnourishment. I could only digest bread and crackers so I have not been sustaining my nutritional needs.

Hope this helps.

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 17, 2021 06:21PM kaufmanscsi wrote:

@star2017 misery does actually love company. It helps to hear I'm not alone. I wish you the best with the school year. I only work very part time. I can imagine being worried about the diarrhea in school. I talked to my oncologist who wants me to do 150 in the am and 100 in the pm and if that doesn't work, to go to 100 twice a day. I am leaning toward just jumping right to that. I don't think I can function otherwise. I have lost too much weight and am too fatigued, otherwise. Starting to get depressed and isolated. I took a break last night and this morning from 150 mg and it's amazing how much better I felt today. (it works so quickly) I was able to get dressed, work, eat, and do chores. I am sad to start again tonight. Let's stay in touch.

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Aug 17, 2021 06:36PM kaufmanscsi wrote:

Loriwithgod -

I'm glad to hear fatigue improved for you! I know on my last drug, Navelbine, my hair began thinning and it was really upsetting. Yes, I agree, more so than when I lost my hair from chemo (on several occasions). I don't know why that is. I'm sure it will happen to me, too. I took Biotin the last time but not sure it made any impact. Someone told me collagen is good, too? Anyway, sending you positive vibes and hope that you know that you helped me. Thank you.

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Aug 21, 2021 01:18PM - edited Aug 21, 2021 01:18PM by prairiesea

Star, Kaufmanscsi and Kabuki, I hope that you are managing with the Verzenio side effects, especially with Star's teaching. I reached the one-week mark and had a bout of the expected diarrhea, plus enhanced nausea, like clock work according to the likely onset of SEs. Two presecription immodium seemed to stop the D, plus I ended up needing a bunch of anti-nausea drugs that day, which seems to have put me at the other end of the lower GI spectrum of problems. We'll see, also haven't been eating a heck of a lot, but try. Also this weird rash at the base of my neck has endured, but that seems to be responding a bit to antihistamines, which is what my ONC recommended. Start the new term Monday, we'll see how it goes.

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Aug 21, 2021 06:01PM star2017 wrote:

Prairiesea, hope the side effects ease up soon. I've had some hectic days so chose to take 1 Imodium pill before breakfast prophylactically. What a difference! I've felt so much better, and may maintain this routine.

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 21, 2021 07:41PM prairiesea wrote:

I'm glad you are feeling better, Star!

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Aug 22, 2021 09:14AM Eftychia wrote:

Hello

I have just started verzenios and femara due to stage IV, metastatic breast cancer to the bones, lungs, and brain. I'm 47 years old and I feel terrified.

Thank you for posting. Your story gives me hope 🙏🌹

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Aug 22, 2021 05:49PM - edited Aug 23, 2021 03:38PM by WenInWI

Hello Loriwithgod,

I also started to experience hair and nail changes after about 15 months on 100 mg Verzenio and Letrozole, and a low fiber diet I had been instructed to follow for diarrhea control, but which was nutrient deficient. I also developed low albumin and low protein levels with lower leg edema. My hair became very dry, kinky, and frizzy on about 1/4 of my head and my nails developed marked ridges, with vertical cracks or splits and one nail became spoon shaped. At 18 months I switched to a high protein nutrient dense diet, no longer low fiber, and started using Imodium more regularly. I'm now at 25 months on Verzenio. I'm taking 1 Imodium every day and 2 on some days. My bowel function has become more normal and my hair and nails have improved. The nail that was spoon shaped is almost back to normal. My leg edema is also getting less. I saw a GI specialist very recently and had a fecal elastase test for malabsorption syndrome due to pancreatic insufficiency. Result was normal. However, I believe I was loosing protein in my loose and frequent stools (the GI doctor dismissed this idea). I believe my high protein diet and better bowel control with Imodium is why I'm seeing improvement in hair, nails, and edema symptoms. My next blood work, including albumin and protein levels, is in about 2 weeks.

Dx 7/2016, ILC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 6/2019, ILC, Left, Stage IV, metastasized to bone/liver Targeted Therapy 10/26/2021 Ibrance (palbociclib) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Hormonal Therapy Femara (letrozole) Surgery Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy Verzenio
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Aug 23, 2021 01:30AM SeeQ wrote:

Eftychia - I'm sorry you find yourself in this group no one wants to join, but welcome. You'll probably start to feel a little calmer as you settle into your treatment plan. Hopefully, it won't be too long before follow up scans show proof the treatment is working.

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 23, 2021 10:11AM prairiesea wrote:

Eftychia, welcome, but sorry that you have to find yourself here. You will find support and good advice here. You are certainly dealing with a lot! But hopefully, as SeeQ says, the treatment will be effective and you will settle into a routine after awhile. You might want to check out some of the other threads specific to the various mets you have, they are all helpful.

Halfway through week 2 I seem to be managing D fairly well with Metamucil, though it's hard to get the second dose of it in at the end of the day.....I generally take Verzenio around 8 AM and 8 PM, then letrozole 9 PM, and it's difficult anymore to stay up to 11 PM to take a second metamucil. I may try to take it late afternoon two hours BEFORE the verzenio.

My main worries at the moment are rashes at the base of my neck and now my leg. The leg one worried me as I've had several bouts of cellulitis in the last year, and it is warm to the touch. But upping my amount of antihistamine seemed to help....which it probably would not have if the rash were bacterial. However this makes me very sleepy. I'm wondering how long I should try with the antihistamines before I go see someone to take a look. Not sure, either, that it's the Verzenio since I've start other things at the same time to deal with the D, like probiotics and metamucil. First rash started before I took metamucil, so hoping it's not that. But I really want the verzenio to work.....I would hate to have to give up on anther standard first-line treatment so early, just after I had to abandon Ibrance...... Anyway, anyone else experience rashes?

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Aug 23, 2021 10:35AM star2017 wrote:

I didn't get a rash but acne flared up on my face right when I started the Verzenio. I've got it under control now, but I definitely seem to be having more issues than I normally do.

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 23, 2021 08:50PM - edited Aug 23, 2021 09:07PM by nnc

I have rashes (eczema) infrequently but particularly when I am stressed - and it can be very bad. I was put on a very high dose of reactine 20 mg twice a day (non drowsy anti-histamine) and topical corticosteroid when this happens.

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 24, 2021 10:24AM prairiesea wrote:

Thanks for this nnc. Did the eczema seem to be related to Verzenio? I hope the antihistamine worked. Hard to really identify what my rashes are. I've moved from Benadryl (or rather the Walgreens equivalent) to Claritin because I can't afford to be half asleep. The largest rash has shrunk but they are both still there. As long as they don't get bigger I'll wait and see what Onc says next Monday. If they look more worrying I'll go into convenient care and have them make sure this isn't cellulitis instead, though that doesn't usually show up on one's neck.....

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Aug 24, 2021 06:54PM nnc wrote:

Hard to know if eczema/dermatitis was related/exacerbated by taking Verzenio- my oncologist referred me to a dermatologist - it was everywhere, warm and itchy. It happened the week of a big reunion of 30 years - so I guess I was too excited! Currently on a 1 week break from Verzenio my neutrophils are 0.82 - hopefully they will go back up so I can restart. Unfortunately this happens quite often but I am told the Verzenio stays in your system so taking a week break is okay. And certainly everything is stable so so far so good. I did find out lately I have a rib fracture which is healing that it was due to bone weakening from radiation I had 5 years ago. I swear the more you look into your body the more things you find.

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 24, 2021 09:13PM prairiesea wrote:

That sounds rough. I'm glad you were referred to a dermatologist. I might ask for that too. I read back through some of your recent posts on this thread and am very heartened by how well you've done on Verzenio. I hope it continues. Also am hoping it will work for me....just on the second week but so far the diarrhea has been minor, so if I can get past this rash thing I'm rather optimistic. It does seem to have worked for a lot of people's bone mets. Sorry to hear about the rib fracture...those can really hurt.

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Aug 26, 2021 03:37PM sammiesunshine wrote:

Hello, I am new to the forum and wondered if anyone had issues with getting lightheaded and feeling like they would pass out. I have 3x gotten really hot, lightehead and passed out twice. No rhyme or reason. Thanks!

Dx 5/2017, Left, Stage IV, metastasized to bone/liver, ER+ Immunotherapy Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Targeted Therapy Chemotherapy AC + T (Taxol) Surgery Mastectomy: Left
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Aug 26, 2021 04:15PM SeeQ wrote:

sammiesunshine - passing out does not sound normal or okay (to my layperson ears) and I would check in with the MO To be safe. Massive, sometimes seemingly unending hot flashes I blame on the AI that I take with the 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 26, 2021 06:05PM star2017 wrote:

sammiesunshine, I never passed out, but I did have that feeling in the first couple of days, immediately after taking Verzenio. It settled after those early days, but I agree that you should let your doctor know.

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 26, 2021 06:07PM star2017 wrote:

I saw my MO today and got my fulvestrant shot. MO thinks that if I need a daily dose of Imodium to get by, then it's worth lowering my dose of Verzenio. We're going to experiment this weekend without the Imodium and then see what the plan is depending on how I react. I appreciate her considering this change if needed.

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 26, 2021 11:03PM - edited Aug 26, 2021 11:03PM by prairiesea

Star....glad your MO is thinking about dosing alternatives to daily immodium. I have been somewhat luckier, I think, in that I only had one bout of bad diarrhea. One thing you might consider....after that episode, I started taking metamucil as recommended by several on this thread. I have had some loose stools but no watery D since (sorry, maybe too detailed). I generally take two capsules around midday (2 hours after my last medicine, as suggested by packaging), and 2 capsules at night. No immodium since the 2 that I took after the D episode. The metamucil might be worth a try, but a dosage change also makes sense if you need daily immodium.

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Aug 26, 2021 11:07PM prairiesea wrote:

Sammiesunshine...I have occasionally felt a little lightheaded since starting Verzenio, but never to the point of fainting or feeling like I would faint. I agree, I'd definitely notify your doctor about that.

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Aug 27, 2021 07:54AM sammiesunshine wrote:

Thank you for the info. It happens in the morning, so I was wondering if it is nutrition related and maybe I didn't have enough in my system. I normally take my verzenio on an empty stomach and when it's happened it has been about 2 hours after. The strange thing is that I always take it without food. Does anyone have good books or websites for nutrition? It seems like there is always someone saying this food or that is not good. So confusing.

Dx 5/2017, Left, Stage IV, metastasized to bone/liver, ER+ Immunotherapy Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Targeted Therapy Chemotherapy AC + T (Taxol) Surgery Mastectomy: Left
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Aug 28, 2021 01:16PM nnc wrote:

My neutrophils have dropped from .82 to .65 so I am still holding my Verzenio. I think my hair is growing which is a bit worrisome as hope that doesn't parallel cancer growth. I will have blood done again in 4 days and wait a day for the results and that will be 14 days off Verzenio so hopefully my neutrophils will be at 1 or greater and I can resume my treatment.

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 28, 2021 08:01PM Sadiesservant wrote:

Hi nnc, I know some have thinning hair on Verzenio but I had no signs of hair issues so I wouldn’t worry about the growth. I am confused by the neutrophils though. Verzenio doesn’t typically impact the neutrophils. Hope they come back up!

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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