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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 02:03AM - edited Jun 17, 2018 09:19PM 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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Oct 12, 2021 12:06PM prairiesea wrote:

I appreciate seeing more discussion on this thread. I also moved from Ibrance to Verzenio becuse of low ANCs of every dose on Ibrance....but now have low ANCs on Verzenio too. Now my onc just wants me to stay on the highest dose and be careful. I'm torn, want to have the most effective treatment possible but also not be worrying about every pathogen that will inevitably cross my path. Ideas????

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Oct 12, 2021 12:41PM - edited Oct 12, 2021 12:43PM by WenInWI

I'd like to share what has finally worked the best for me dietarily with regard to controlling side effects from Verzenio. On the suggestion of another recent poster I have been following a low FODMAP diet. This has reduced my intermittent stomach pain to almost never/none and it has also reduced epsodies of loose stools (I still use imodium). I never had any problems with high FODMAP foods before starting Verzenio, but clearly do now. It's an easy diet to understand with lots of info available on line. When I want to know if a specific food is high or low FODMAP I just type in the food name + FODMAP and the answer comes up immediately. There is also an app that can be downloaded. Some of my favorite foods are now off limits (ex: apples) but there are many other tasty safe foods (ex: blueberries). The best bread product I've found is sourdough spelt flour bread made by Berlin Bakery. If not avialable locally, they will ship.

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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Oct 12, 2021 01:42PM WenInWI wrote:

prairiesea..... I've not had low neutrophils so far while on Verzenio, so not sure if following a low FODMAP diet would have a correcting effect. I do have low albumin and low protein and the low FODMAP diet has had NO correcting affect so far.

One idea I've read about for strenghening the innate immune system, which I beleive includes neutrophils, is to do Contrast Showers. There's info online and on YouTube re contrast showers. The basic protocol is: 4 minutes of hot (102F-110F), followed by 30 seconds (no longer than 1 minute) of cold (55F-70F), for a minimum of 3 cycles. I do the three cycle protocol about 3 times a week. I do just one cycle every day.


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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Oct 12, 2021 09:11PM emac877 wrote:

Prariesea - I have been on Verzenio for almost 2 years at the 150 mg/BID dose. Initially I did have a low ANC. At one point it was so low that my onc at the time considered stopping it but the next month it was within tolerable levels. I have found after trending my levels that my ANC has steadily gotten better the longer I have been on the drug. I was also concerned about pathogens as I work in healthcare and this pandemic started shortly after I started Verzenio. I've done well just being smart about it without getting too paranoid. I wash my hands when I come home from the store, I carry hand sanitizer in the car, that sort of thing. I also intentionally choose dietary immune boosters like garlic, honey and citrus in my diet. I've heard intermittent testimonials about cold showers and cryotherapy techniques. I absolutely hate to be cold so I can't speak to the efficacy of that but what I've done seems to be working...knock on wood as we head into flu season ;-)

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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Oct 22, 2021 08:45PM - edited Oct 22, 2021 08:47PM by nnc

My neutrophils are still low after almost 2 years on treatment and with my reduced dose of 100 mg in am and 50 mg in the evening. I am off for one week and will do a blood test again. Hoping it will be be high enough to stay on the Verzenio. I think with years of chemo treatment my blood cells are low and all these treatments only make it more precarious.

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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Oct 25, 2021 05:38PM emac877 wrote:

Wouldn't you know it I had to go and say something about how great I had been doing and just this month had a drop in my ANC back to lower levels. Not so low that my MO would call and alter my dose but low enough to be watchful. This past week I have also started up with the GI upset again. Haven't had the spontaneous cramping and running to the bathroom in a while. That has been intermittent the last few years but for the last several months has been a consistent thing. I used to have no trouble unless I ate something super spicy or fatty now even a turkey sandwich will set me off. Not sure if these things are all Verzenio or just a cumulative effect of treatment overall. I only see my MO every four months so I am adding to my list of things to ask about.

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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Oct 26, 2021 12:46AM Maaaki wrote:

Hi, I am on verzenios for almost a year after one year of kisqali and small progression. It seems to work well for my disease, but with time my blood cells are getting lower, not only neutrofils but also erytrocytes. So also I think it is cummulative effect. Did you experienced the problem with anaemia as well

Dx 2013, DCIS/IDC, Right, 1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Dx 5/2017, Stage IV, metastasized to bone/liver, Grade 1, ER+/PR-, HER2- Surgery Mastectomy: Right; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Chemotherapy Surgery Hormonal Therapy Aromasin (exemestane) Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy External: Bone Targeted Therapy Kisqali Surgery
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Oct 26, 2021 05:31AM SeeQ wrote:

emac - your GI upset sounds like my normal on Verzenio. I recall HopeandGratitude saying her diarrhea worsened after about 2 years on Verzenio. I don't know what dosage your on. For me, the D started to be unmanageable at about the 1 year mark, but a dose reduction to 100mg helped a lot.

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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Oct 27, 2021 10:24AM emac877 wrote:

SeeQ - I guess it's just the gift that keeps on giving. I have to really watch my fluid intake also because I tend to have alternating constipation if I am sitting too much or not getting enough fluid and then everything will change course. I just am not sure what changed with my system but I see my MO in December so I will have to ask about a dose reduction.

Maaaki - I do think there is some cumulative effect. I had a drop in my neutrophils and my erythrocytes also. It seems to vary a little bit but this last round almost all of my blood counts were low.

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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Oct 27, 2021 11:48AM Husband11 wrote:

Maybe we were reckless in trying this, but it seemed to help. The Onc told us that once we went with a reduced dose, if it didn't work anymore, we were done with the drug. So, we wanted something we could do on our own, without telling the Onc. So, my wife takes 2 150's one day, and one 150 the next, resulting in a 25% dose reduction. She has seen no loss in effectiveness, and seen reduction in fatigue and increase red blood cell counts, but she is also taking 9mg enobosarm daily as well, so its hard to say which of the two made the improvements. Her side effects, like nauseau, are still there, but not as frequent.

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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Oct 27, 2021 05:07PM star2017 wrote:

If you haven't already, do try Metamucil. I took 150mg of Verzenio, but had frequent diarrhea. Imodium helped but so did the Metamucil. My MO didn't want me on daily Imodium, and her nurse didn't think the Metamucil would provide consistent help because it's usually given for constipation. Anyway, I've found myself frequently constipated since switching to 100mg. The Metamucil has really helped. I hope it does for you 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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Oct 27, 2021 06:47PM nnc wrote:

Neutrophils still low but I guess my oncologist is going by the rules anything under 1.0 I take a pause and or reduce the dose, so I went from .78 to.9 after taking a pause for one week. This is on 100 mg in am and 50 mg in pm. I have been on Verzenio for 22 months. I started at the highest dose and have had several adjustments or lowering of doses. My pivot nurse says I can still reduce the dose further as long as the medication is effective. I will wait and see what happens next. I would like to stay on Verzenio. I am more constipated now that the dose is so low. So metamucil seems like a good solution for diarrhea or constipation!

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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Oct 28, 2021 02:57PM luce wrote:

Husband: I’d started on high dose, later reduced, when that started to fail )according to tumor markers), I went back to max dose and milked a few more months out of Verzenio. Also, when THAT started to fail, I added Plaquenil (hydroxychloriquine), and that reversed the trend in tumor markers and would presumably have given me more time on Verzenio also, but I couln’t tolerate SE’s. Where do you buy enobosarm? Is it pure? Do they sell to US? Thanks

Dx 12/12/2016, ILC/IDC, Left, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Oct 28, 2021 03:10PM Husband11 wrote:

We bought the ostarine / enobosarm from Science Bio. I felt they were to be trusted as they have all their batches 3rd party tested for strength and purity. They are located in the US. They are getting out of the Sarms business, so they only have to sell whatever they have left in stock. I have also heard that Chemyo is a good source and also tested for strength and purity.

What dose and regimen did you use for the hydroxychloroquine and what side effects did you suffer? I have a stash of it that I ordered from India before the pandemic.

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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Oct 28, 2021 04:39PM - edited Oct 28, 2021 05:27PM by luce

husband: thanks for that info!

I used 200mg twice a day. That was the effective-for-me dose. My SE'a were severe anorexia and insurmountable food aversions. Vegetables are my favorite foods and I hated them on hydroxychloriquine. It totally took my appetite away AND made me a super taster. Which isn't super at all. Also severe diarrhea, unspeakable STOMACH (not intestinal/diarrhea pain, but additional) pain. I lost 15% percent of my bodyweight and had severe sarcopenia. While many people tolerate hydroxychloriquine fine, I wouldn’t mess with generics. I’d get the authorized generic, which is brand-name Plaquenil marketed differently. I think SOME of the SE’s would’ve been less on that. Proceed with caution: due to its long half-life, it took three months for me to improve after I discontinued

Dx 12/12/2016, ILC/IDC, Left, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Oct 28, 2021 08:28PM prairiesea wrote:

Thanks for all of this....I have had limited time to check in lately and hadn't noticed this thread had been so active. Thanks emac, maaki and all about the neutrophils, I'm sorry yours are also low, but relieved my MO is not alone in staying the course. I would second Star's suggestion of Meta Mucil. I tried it at the beginning but wasn't sure it was working as my bouts of diarrhea got more frequent. After a 3 day break from Verzenio to let my neutrophils come back up in late September I tried again to see if taking more would help. I'd only been taking 2 capsules 2 times a day. I found 4-5 capsules 2 times a day kept the diarrhea episodes to once a week, which is manageable. Am definitely feeling more fatigued too, though....I do think, even though I've only been on treatment (Ibrance first, now Verzenio) for 7 1/2 months, that it's cumulative. But recent scan shows partial response, and my back pain has improved considerably, so I'm fortified to keep going.....

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Oct 29, 2021 08:38AM Husband11 wrote:

Here is an interesting summary of previous trial data on the use of high dose estrogen as a treatment for heavily pretreated patients. I thought this might be of interest, as so many of the women on here have been previously treated with AI's, and that apparently primes sensitivity to high dose estrogen treatment. As well, it has worked on women who are ER/PR negative.

The use of high-dose estrogens for the treatment of breast cancer (maturitas.org)

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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Nov 5, 2021 05:22AM nnc wrote:

Curious if anyone knows if vaccines would influence ANC? I've had 3rd COVID vaccine and flu shot . I have been off Verzenio for 18 days and they went a bit higher .9 last week and this week it is .7. Seems strange ANC are lower than previous week as Verzenio should be pretty well gone from my body by now.

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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Nov 25, 2021 09:20AM Husband11 wrote:

How much and how often / time of day do you take the Metamucil for helping with verzenio stomach problems?

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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Nov 25, 2021 06:24PM star2017 wrote:

1-2x day


By the way, my nurse kept insisting it wouldn't work even when I told her it did help. Because it's meant to help with constipation, she wasn't willing to consider how it might help for diarrhea. Anyway, there's no harm in trying it out.


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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Nov 25, 2021 07:18PM Husband11 wrote:

Thanks, my wife is going to try it.

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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Nov 26, 2021 11:17AM SeeQ wrote:

Husband11- she may have to experiment with the dosage, more or less to find a comfortable balance. Gas X (simethicone) can help with potential bloating or cramping.

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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Nov 26, 2021 04:24PM prairiesea wrote:

Husband....I have had good results with Metamucil. I take the capsules--4-5 twice a day. However sometimes that tips me toward constipation, in which case i skip one of the doses for a day or two. I think she probably needs to find her own rhythm with it; it took me awhile. Hope it helps.

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Nov 27, 2021 08:57AM Husband11 wrote:

Thanks again. She is trying it, one teaspoon of the powder in water, twice a day. Hopefully it calms her bowels. She is feeling less bloated today. It's puzzling the way it comes and goes. Makes you almost superstitious, in that you question everything you take in, wondering if that was the cause.

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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Nov 27, 2021 09:08AM star2017 wrote:

Yes, and I'm not sure if it's about what we eat or about the build up of the medication.

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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Nov 27, 2021 12:29PM SeeQ wrote:

I really feel like I can eat most things, as long as I don't overdo it (e.g. bacon), and I don't do it every day (e.g. cruciferous vegetables or raw veggies/salads).

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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