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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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Jul 27, 2021 09:41PM Kabuki wrote:

Thanks for responding Star2017 and SeeQ. The original clinic 11 years ago that made all the mistakes is the same organization but was at a different site. That site is shut down and the office staff is gone. This time around is so much harder as I felt that I was in good health when I was first diagnosed 11 years ago. I was able to work during chemo and radiation. Now, I sleep 16 hours a day and am exhausted and sick for the few hours that I am awake. I can’t stand for long and cannot do the smallest of chores. I’ve turned into an invalid.


The on call nurse that I spoke to yesterday told me that they had not received my Pet scan so the oncologist was unaware of the new cancers found.I can’t understand this as I got the scan at the same hospital that this clinic is a part of. I’m able to go in and pick up the results and CD 48 hours after scans.

The nurse navigator returned my phone call today and said that she will have the oncologist call me. She also had the scheduler at UCSF set up an appointment for me. She gave me a choice of in person or video chat. I would rather in person but choose video chat. It’s an hour drive and I’m having diarrhea and vomiting issues. It’s a full time job to try and stay hydrated. Having access to a nurse navigator is a God send. They didn’t have one 11 years ago.

SeeQ,

I appreciate you sharing your history. It gives me hope.

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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Jul 27, 2021 09:51PM star2017 wrote:

I'm so sorry, Kabuki. I would also be frustrated that these different doctors can't share imaging and results if they're part of the same system. I hope you feel better and get the attention and support you need.

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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Jul 27, 2021 10:09PM SeeQ wrote:

Kabuki, I was sleeping long hours like that in the beginning - it gets better (I still sleep a little extra, but not like that).

Metamucil (psyllium) may help with the big D (read earlier pages in this thread for discussion). It was a real game changer for some. Make sure to space it 2 hours from when you take your meds

The are some who really need a dose reduction - I'm assuming they started you on 150mg, 2x a day with an AI or similar. I stayed at full dosage until after NED, and then the D was worsening (after a long period of improvement). I was never nauseous, but was absolutely NOT interested in food in the beginning. I had to force myself to eat a little when it was time.

I'm glad you have a nurse navigator - that may close the communication gap for you. I hope you get some answers soon. Sending a cyber hug your way.

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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Jul 27, 2021 11:41PM emac877 wrote:

Kabuki - I agree with Star2017. What you are saying doesn't sound right at all. I thought starting Verzenio labs should be checked every two weeks for the first month at least and then monthly. I have been on it a year and a half and still get monthly lab draws and visits with my MO. Definitely is odd that your MO hasn't been updated on the PET but you have. It sounds like a horrible system. Even in good ones, things get missed. Unfortunately we need to advocate for ourselves or get help. Is there a navigator or a family/friend that can help you with any of this?

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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Jul 28, 2021 01:14PM Kabuki wrote:

Emac877,

I read on the Lilli site that labs should be done every 2 weeks for the first 2 months and every month thereafter.

I am not scheduled for labs until September 7 after the Faslodex injection. There is no scheduled oncologist appointment.

I see my GP tomorrow morning and will speak to him about it. They have grossly deviated from the standard of care on the labs and this can have serious repercussions. Verzenio can have serious side effects and patients need to be closely monitored.

This is the kind of negligence that made me leave them 11 years ago. I went to PMC in San Francisco and was well looked after. My stress level was through the roof. My oncologist at PMC has now retired. The level of caring and competence between the office staff at both clinics was night and day.

I’m going to call the nurse navigator this morning and try to get an appointment. I need answers

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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Jul 28, 2021 01:26PM star2017 wrote:

Kabuki, Is there another practice you can go to? Are you able to go back to PMC?


I know how daunting it is when your MO retires. Mine just retired last year, and it took me a little time to feel comfortable with the new MO. However, she is very thorough and responsive. We are in an area with a lot of medical options, so I would switch if I noticed that kind of neglect you have experienced. Do you have options close by?

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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Jul 28, 2021 02:31PM Kabuki wrote:

Star2017,

Unfortunately, I don’t have the same insurance so PMC is out. The only other options near me are switching to Kaiser or another insurance plan. I have an HMO. If I switch plans, I can no longer see my GP or cardiologist who are both good.

I don’t know if my plan would let me go to UCSF.


I left a message on the nurse navigator’s voicemail that I want an appointment with the oncologist. She’s pretty good about getting back to me.

I plan to have a very candid talk with him and my GP tomorrow. Verzenio is a very common medication in cancer clinics. There is no excuse to screw up labs like this.

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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Jul 28, 2021 02:50PM star2017 wrote:

I agree, Kabuki. I hope you get the care you deserve.

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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Jul 28, 2021 03:47PM emac877 wrote:

Kabuki - I agree, that sounds negligent and there's no reason for it. My oncologist retired this month and I was heartbroken because she is wonderful. The clinic I go to has another very good competent oncologist I will be transferring to but it will take a bit to be comfortable and the anxiety over it is very real. I hear a lot of good things about UCSF. I hope you are able to go there. Insurance is such an albatross around our necks. I am in hopes your navigator can help. I would agree, Verzenio is one that you should be closely monitored on. I can't imagine a competent practitioner not seeing you before September if you are just starting Verzenio.

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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Jul 28, 2021 08:07PM SusaninSF wrote:

Husband 11,

I received my order of Enobosarm from Chemyo. I am also on Verzenio+Exemesthane. When your wife started on Enobosarm, did you stop the Exemesthane? Also wondering how to figure out the dosing. The bottle says 25mg/ml but that can't be correct since 25mg=.025 ml. The bottle is 50ml. Your wife is on 9mg so that's .009 ml? Do you use a smaller than normal syringe to dose such a small amount?

Thanks for your help with this.

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin)
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Jul 28, 2021 10:00PM - edited Jul 28, 2021 10:03PM by Husband11

Susan,

My wife continues to take the aromatase inhibitor as prescribed.

The 25 mg/ml refers to the concentration of the enobosarm in the carrier liquid. It is not pure enobosarm, but watered down such that each ml of the liquid contains 25mg of the active ingredient.

Our enobosarm is 30 mg/ml, so she takes 0.3ml daily. (0.3ml x 30mg/ml =9mg). Yours, being 25mg/ml, you would need to take 0.36 ml daily. (0.36ml x 25mg/ml= 9mg) So a little over 1/3 of an ml or cc is what you want. Does it have markings on the dropper for fractions of an ml? If not, I would get a 1ml insulin syringe, as those have good fine markings.

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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Jul 28, 2021 11:00PM SusaninSF wrote:

Husband11,

Thanks for your prompt response! Great explanation.

My syringe has .1 ml markings as well as tiny sub-markings for .02 mls so I can measure 0.36 well.

She takes that dosage every day?

Best, Susan

Mets to brain, lung, liver, eye, femur bone. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin)
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Jul 29, 2021 09:55AM Husband11 wrote:

Yes, she is taking the 9mg every day. She dilutes it in a glass of water as it tastes funny taken straight.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Aug 1, 2021 03:23AM davon67 wrote:

Over the Twenty-Five years that I have had RA, I have, I believe taken most of the drugs created for the disease. All have resulted in normal side effects or contraindications. World Herbs Clinic RA FORMULA is definitely the most effective treatment for me and the only one which works. I only used it for two months. Am currently living Pain-free.

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Aug 2, 2021 04:05PM Moderators wrote:

davon67, that's really great to heart that you found something that has helped and continued to work. Can you share a bit more about yourself, and your breast cancer?

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 2, 2021 08:38PM Going2BeatThis wrote:

I have been experiencing more fatigue than usual. Am on Letrozole since mid February and 150mg Verzenio twice a day since mid March. My PT scan in mid June showed that many of my bone mets have resolved themselves and my MRI showed that the lesions in my skull were getting smaller. My last blood tests mid June showed that both my CA 15.3 and CEA continued to go down. My next brain MRI is not until mid September. My MO says that fatigue is not unusual and is going to talk to me about decreasing the dosage. Am having mixed feelings about doing so. Want to continue seeing decreases n both my makers and lesions.

I know everyone reacts differently but am wondering if anyone has any experience with decreasing their dosage and having their makers go up? Is anyone taking one dosage in the am and a different dosage in the pm as prescribed by their MO?

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Aug 3, 2021 11:18AM - edited Aug 3, 2021 11:19AM by Husband11

Goingtobeat this, my wife was experiencing a lot of fatigue from her 150mg 2x daily verzenio. She wanted to try a lower dosage, but her onc was reluctant. We were also warned that if you do down in dosage, you can't go back up. So, knowing that she gets tumor markers taken fairly regularly, we on our own, without telling the Onc, switched her to 2 pills one day and 1 pill the next day. She also started a, shall we say, grey market drug called enobosarm (ostarine). Her tumor markers began to fall further. Between the last two tests her tumor markers fell 30 and 40 percent. Her energy levels are much higher. She can now out walk me. So, I can't say for sure if it was the 25% reduction in overall dosage by taking 3 pills over 2 days instead of 4, or whether it was the enobosarm, but she is experiencing much more energy, and falling tumor markers.

We figured with the 3 pills over 2 days instead of 4, we could always go back up to 4 pills, if her tumor markers started to rise.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Aug 3, 2021 03:37PM Cure-ious wrote:

Husband, Very interesting idea to add in Enobosarm and see what happens to tumor markers, and especially encouraging that it may actually be helping! I am not sure if my cancer subtype would respond to Enobosarm, but have been thinking it would be great to have a bit of bone and muscle help after all these years of anti-estrogens...

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Aug 3, 2021 04:20PM Husband11 wrote:

It would be impossible to credibly state that it is the enobosarm causing the recent drop in tumor markers, and her increased energy, but it certainly seems to have done no harm, and it might be responsible, and having her wear me out on evening walks is quite the pleasant surprise. She says she feels so much better now. She got up this morning and went for a bike ride! Went out in the garden and picked peas and tomatoes.

I try to evaluate speculative therapies on the basis of:

1. Evidence of benefit;

2. Absence of risk of harm; and

3. Cost.

If it's cheap, and doesn't exhibit risk of harm, then it doesn't have to have a lot of evidence of benefit. But if it is expensive, or worse, risky, there needs to be a lot of evidence of benefit. The enobosarm isn't cheap, but it does have a very low risk of harm, and has prospect of benefit in terms of both the cancer, and strengthening the body. It is also good that the effective dose is fairly low.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Aug 3, 2021 10:55PM Cure-ious wrote:

Husband, Plus she can always decide to drop it if any problems develop. The key is feeling better, more energy and maybe doing your body some good, in addition to beating back the cancer. The Enobosarm, as you know, is activating AR so it can counteract the ER signaling in the cancer, but in addition doing a bunch of other stuff for bone and muscle. Like endocrine therapy, I don't suppose you would want to take it with chemo, so if we want to try it, its best done at some early stage point, or in-between treatments... I hope they do a gazillion trials on this so we know what combinations work best for it.. Thrilled to hear she is feeling so good, that is supposed to be the goal here

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Aug 3, 2021 11:07PM - edited Aug 3, 2021 11:12PM by Cure-ious

I did something similar, but for my dog- she developed a rare anal cancer, aggressive, surgery couldn't get it all. It came back 16 mos later, they said no point to do chemo, it would just make her sick and she wouldn't get more than a couple months benefit. She was panting like crazy all the time from lung mets.

There was big discussion here at the time about the anti-cancer activity of Fenbendazole, a dog dewormer that has a strong chemo activity when tested on cultured cancer cells, so we decided to give her that. Had to mix it in butter and then cream cheese to hide the smell. Scans were prohibitively expensive, so we just decided to treat symptoms- after giving it to her for several months, the difficulty breathing went away. We took her off the drug, a few months later trouble breathing came back again, so we did quite a few months of the drug. She has a visible tumor on her tail but her breathing again became fine. Because she is getting older and somewhat frail, in March 2020 I decided no more chemo, let "nature take its course".

Well, that hasn't happened! She's here with me right now, breathing is fine- we actually recently took her back in for a vet visit, they had assumed she'd died. They gave us an appetite stimulant since she's lost quite a bit of weight, and suggested we go back on the Fenbendazole since she's been off more than a year! Well, she'll be 14 in Nov (was just 10 when first diagnosed!), and having lots of other old-lady problems, so I don't think I will bother her with Fenbendazole- nevertheless at this point I think she will die of old age, nothing to do with that tumor on her tail... Very happy to have had her with us the past two years..

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Aug 4, 2021 10:10AM Husband11 wrote:

That's great about your dog and the fenbendazole. Lots of people trying it. I know some of us on here tried it, but didn't get any results with breast cancer.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Aug 4, 2021 02:15PM Moominmamma wrote:

For all those interested in how long on Verzenio and previous CDK4/6 inhibitor, I was on Ibrance/letrozole for 27 months, and switched to Verzenio and Faslodex in January 2021. No problem with insurance re switch. My tumor markers had been steadily rising for about 9 months, and I had increasing stranding and nodularity of the omentum concerning for peritoneal carcinomatosis when my Onc decided to switch. He said that Verzenio is quite different from Ibrance, targets the CDK4 much more than does Ibrance, hence a new treatment. So far, scans show no progression from September 2019, and maybe a slight improvement in size of nodules in my stomach. Tumor markers continued to rise slowly after some fluctuation after switch. I am in Chicago for several months and seeing a new onc at Northwestern, who said they don’t do tumor markers, just looks at scans regularly for treatment purposes. I feel better on the Verzenio/Faslodex though more tired. On both CDK4/6 inhibitors I have to be careful what I eat because of stomach pain and gas, which I think is all due to the treatments.

Dx 8/2007, DCIS, Left, Stage 0, Grade 1, ER+/PR+, HER2- (IHC) Surgery 9/10/2007 Lumpectomy: Left Surgery 9/17/2007 Lumpectomy: Left Dx 5/30/2012, IDC, Left, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (FISH) Surgery 7/12/2012 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Dx 9/15/2018, Left, Stage IV, metastasized to bone/other, Grade 3, 1/1 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy 10/2/2018 Femara (letrozole) Targeted Therapy 10/6/2018 Ibrance (palbociclib) Hormonal Therapy 1/1/2021 Faslodex (fulvestrant) Targeted Therapy 1/11/2021 Verzenio Radiation Therapy 3DCRT: Breast, Lymph nodes Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab)
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Aug 6, 2021 06:32PM star2017 wrote:

Hi all,

I'm on day 3 of Verzenio, and it's going well for the most part. Did any of you experienced acne-like break outs on your face? This is pretty unusual for me, and I was wondering if it could be the Verzenio.

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 7, 2021 12:18AM - edited Aug 7, 2021 12:23AM by prairiesea

I am starting on Verzenio sometime soon (150mg with letrozole.....V is ordered, but I suspect insurance and setting things up with a specialty pharmacy is holding things up). I am trying to curb my worries about SEs and not borrow trouble. However, in two weeks I will be teaching university classes three days a week. If and probably when the Big D hits, I am kind of worried about what this will mean. Fortunately I set up online teaching for this term last Spring when I was in the midst of diagnosis and didn't know what was coming in the future. Now I'm switching from Ibrance, which tanked my neutrophils/wbc on every dose. I am wondering....can I take imodium (reluctant...didn't realize it's actually a mild opioid, a class of drug i've been trying to avoid) or a some natural version of psyllium husk powder (not sure about the aspertame in Metamucil) prophylactically to avoid problems in the middle of a 90 minute to 2-hour class session??? Suggestions from folks with experience on Verzenio would be much appreciated.

Edited to add....I have been very grateful for reading the experiences on this thread already. Grateful for all of you who have shared your experiences already....which is how I know about psyllium as a possible control for SEs.

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Aug 7, 2021 04:58AM - edited Aug 7, 2021 05:00AM by Mermaid007

Hi Emac

Sorry for late response.

I was on Faslodex for 6 months then we added Verzinio, the combination lasted 2 years. I was on the lowest dose possible 50mg as I was unable to tolerate a higher dose. So I got a good run with it. Hope it continues to work well for you too xx

Debs
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Aug 7, 2021 11:01AM star2017 wrote:

prairiesea -- I asked the same question about prophylactic use of Immodium, and another poster recommended waiting to see how I react to Verzenio. I'm on day 4, and while there has been some stomach discomfort, I have not had to run to the bathroom suddenly or more frequently. I was very nervous, but the side effects haven't been bad for me so far. I'm a teacher too, so I understand your concern. I hope starting Verzenio goes smoothly for you.

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 7, 2021 12:16PM Moominmamma wrote:

I had this regularly on letrozole and ibrance. Used topical acne meds! I blamed the letrozole but maybe it was Ibrance.Hasnt happened very much on faslodex/verzenio combination, now on it 7 months.

Dx 8/2007, DCIS, Left, Stage 0, Grade 1, ER+/PR+, HER2- (IHC) Surgery 9/10/2007 Lumpectomy: Left Surgery 9/17/2007 Lumpectomy: Left Dx 5/30/2012, IDC, Left, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (FISH) Surgery 7/12/2012 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Dx 9/15/2018, Left, Stage IV, metastasized to bone/other, Grade 3, 1/1 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy 10/2/2018 Femara (letrozole) Targeted Therapy 10/6/2018 Ibrance (palbociclib) Hormonal Therapy 1/1/2021 Faslodex (fulvestrant) Targeted Therapy 1/11/2021 Verzenio Radiation Therapy 3DCRT: Breast, Lymph nodes Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab)
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Aug 7, 2021 07:07PM prairiesea wrote:

Thanks star2017. That's good to hear; I hope the GI side effects continue to be tolerable for you!

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Aug 10, 2021 09:39AM - edited Aug 10, 2021 11:42AM by nnc

Hi still doing well on Verzenio 100 mg twice a day - 20 months into this treatment. I have blood tests every month, see my oncologist every 2 months and have ct scans and bone scans every 4 months. So far the Verzenio has shrunk the tumour in clavicle area (this is very visible and palpable so is a good indicator of treatment effectiveness that I can monitor), the bone mets seems stable and small in size. I have muscle mini cramps everywhere but most troublesome in abdomen, sporadic diarrhea but definitely manageable and my diet is pretty unrestricted at this point. I was curious if any of you know if there is skin, hair and nail fragileness and dryness, if any changes in perineum skin irritation. Having joint pain which is a mix of age, osteoarthritis and bone cancer and side effects of Verzenio I would think. I have peripheral vascular problems as skin in lower legs are discolored and shiny - don't know if this is effect of previous chemo taxol or Verzenio. Have lymphedema from mass under axilla to right arm so suffering in this heat with having to wear compression sleeve and stockings. I was wondering if any of you are allowed alcohol - I generally do not drink much or may have a drink with friends which of course hasn't happened during covid but my oncologist has said alcohol is not allowed while on Verzenio.

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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