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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 2, 2021 03:44PM SusaninSF wrote:

The site for Enobosarm only accepts crypto-currency or bank transfers. It also said, "SARMs products are being discontinued and will no longer be restocked once sold out."

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)
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Jul 2, 2021 03:47PM - edited Jul 2, 2021 03:55PM by Husband11

SusaninSF: The dosage of 9mg was determined in a clinical trial that compared 9mg to 18mg. They found both doses worked, but they got better results with the 9mg. One must be very careful in sourcing Ostarine, as it is often faked or under doses. There are a small number of companies that have a really good reputation, with independent testing of their product. From what I've read, in the USA, the best brands were Science Bio and Chemyo. We bought Science Bio. They are ending their sales of sarms, and will only have to sell what they currently have in inventory.

We either paid by credit card or e transfer. Can't remember which. We certainly got the product.

Haven't ordered from Chemyo, but they have a good reputation, 3rd party testing, and they do accept credit cards.

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 2, 2021 03:58PM SusaninSF wrote:

Ordered from Chemyo since they had a credit card payment option through MESH.

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)
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Jul 3, 2021 04:23PM - edited Jul 3, 2021 04:24PM by WenInWI

Dear Shetland Pon,

Thank you for your response and feedback. Perhaps my low albumin and low protein resulted more from the chronic diarrhea than the nutrient deficient low fiber diet?? Like you I started taking SL B12 and after one month my level improved and I feel better. I also eat fermented foods, but in small amounts (1 -2 TBS) - more than this seems to provoke diarrhea. I sometimes take psyllium powder for the soluble fiber (as several women report doing), but I'm still not sure if it helps or not. The brand I use is Yerba Prima as recommended by Consumer Labs which rates it as low in lead. My oncology pharmacist says to space psyllium or any fiber supplement by two hours before or after medication to avoid reduced absorption of the medication. I also take a probiotic and switch between brands to get different combinations of organisms. I think the probiotics have helped with the diarrhea. I just got the OK from the oncology pharmacist to take OTC pancreatin (amylase, protease, lipase) digestive enzymes. Pancreatin is porcine derived. There are also fungus derived digestive enzymes that include more than just amylase, protease, and lipase but the pharmacist will not give the OK to these because they lack sufficient information about them. I just started the pancreatin, so will see if it helps with my low serum albumin and low protein. I do not think the pancreatin has made the diarrhea worse. I like your idea of eating papaya as a source of a natural digestive enzyme. Thanks again for sharing.

Wendy

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 Surgery Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy Verzenio Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast
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Jul 5, 2021 02:11AM SusaninSF wrote:

Cross posting with Liver thread;

Scans showed stability so Verzenio must be working! Subcapsular liver tumor that I'm still not certain is cancer changed shape but not volume, 1.8 x 1.1 cm previously 2.4 x 0.8 cm. Anyone else see this kind of shape change in just two months?

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)
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Jul 5, 2021 08:52AM SeeQ wrote:

SusaninSF - I don't know about shape change, but my largest liver tumor shrank to about half the original size in 3 1/2 months (13.7cm to 7.9cm on PET-CT).

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 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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Jul 5, 2021 12:10PM SusaninSF wrote:

SeeQ,

That's fantastic! Thanks for sharing.

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)
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Jul 5, 2021 06:32PM elenas401 wrote:

Hi Susan: Hope Verzenio is working for you and the shape change is a good sign I started Verzenio almost a month ago. My insurance didn't want to cover it because I had already been on Ibrance a couple years ago but the drug co. is getting it for me. I see that you too had been on Ibrance in the past. Did your onc. feel that it would work for you on a different way that Ibrance did? Some think that a "holiday" from that type of drug can make you responsive to it again.

Dx 1/2017, Right, 6cm+, Stage IV, metastasized to lungs, Grade 3, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Chemotherapy Chemotherapy Taxol (paclitaxel)
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Jul 6, 2021 09:49PM star2017 wrote:

Hi everyone, I finished radiation today, and the plan is to start abemaciclib in a few weeks. It's been helpful reading about your experience. I'm nervous about the side effects, but hoping we can manage them.

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 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 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Verzenio Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant)
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Jul 7, 2021 06:57PM SusaninSF wrote:

Thanks, elenas401!

Last year, I had the same experience with my insurance company, BCBS of MA, refusing to pay for Verzenio since I had already been on Ibrance. Strangely, they said they would pay for Ribociclib which is more similar to Ibrance. This year, I switched to Cigna and they approved Verzenio. I didn't think of asking the drug company to give me the drug. Great move!

I didn't have a lot of confidence that Verzenio would work but it's my only remaining non-IV choice. Someone mentioned that it might work if you have been on Piqray in between. So far, so good.

star2017,

I found the advice at the top of the thread to be very helpful. Diarrhea is usually the worst SE with Verzenio. It is also the worst in the beginning and many people, like me, adjust to it after a couple of months. These days, I take 2 Imodium in the morning and I'm usually good. If I have diarrhea, I take another 2 pills. I also have to avoid acidic or spicy food. Dairy seems to be hard to tolerate.

Wishing you the best!

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)
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Jul 7, 2021 10:36PM - edited Jul 7, 2021 10:40PM by WenInWI

Star2017,

I'll chime in on diarrhea control while on Verzenio. Like SusaninSF I found the advice from Constantine Kaniklidis at the top of the page very helpful - much more helpful than the advice I got from my MO team. I was told to follow a low fiber diet, but this turned out to be terrible advice. I now eat normal food that is nutrient dense. Like SusaninSF I avoid spicy and acidic foods. I gave up all caffeine - coffee, tea, etc. (BTW, I was told by the oncology pharmacist that chamomile tea is contraindicated while on Verzenio). I tolerate lactose free dairy just fine or take a lactaid tablet. As others have reported I take a probiotic supplement, but plan to transition to fermented foods only - things like sauerkraut, kefir, yogurt. I take powered psyilium sometimes (it's a soluble fiber), but still not sure if it helps with the diarrhea. I take one imodium either daily or every other day. And it's important to stay well hydrated. The best to you.

Wendy

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 Surgery Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy Verzenio Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast
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Jul 12, 2021 06:05AM Mermaid007 wrote:

Hello,

Just to say I was on Verzinio and it worked for 2 years. The tummy issues were a real problem but I was told to research “ FODMAP" which stands for "fermentable oligo-, di-, mono-saccharides and polyols" If you google that it tells you what foods are high or low in fodmaps. So for example spinach, strawberries, carrots, blueberries are low fodmap so ok to eat, but cabbage or peaches are high fodmap so not ok. It's not restrictive as plenty of nutritious foods are low fodmap. It's designed to help people with IBS and it's to do with how our gut breaks down certain foods. Have a read as it really was a game changer for me while I was on this drug.

Also you can ask for dose reduction if it's very bad.

Hope you get a long time out of it, I was sad to have to come off it.

Xx

Debs
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Jul 12, 2021 08:03PM emac877 wrote:

Mermaid007 - you bring up a good point. I've been on Verzenio for a year and a half and knock on wood am doing well on it an maintain NED status. I'm curious, how long have people been on Verzenio? I couldn't seem to find a consistent average amount of time. You mentioned 2 years. I am hoping to get at least that and hopefully more since I have done well on it.


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 Surgery 12/11/2019 Radiation Therapy 12/23/2019 External: Bone Targeted Therapy 1/7/2020 Verzenio Hormonal Therapy 6/22/2021 Faslodex (fulvestrant)
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Jul 13, 2021 06:32PM SusaninSF wrote:

I'm wondering how long people have been on Verzenio if they were previously on Ibrance. I was on Ibrance for 20 months. Not expecting the same kind of duration of response for Verzenio.

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)
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Jul 15, 2021 06:06PM - edited Jul 16, 2021 08:30AM by WenInWI

I'm also interested in learning how long people have remained stable on Verzenio. My oncologist told me "on average 2 years". I've been on 2 years now (just started week 105). My next scans aren't until Sept which is a 4 month interval since last scans.

I found this statement on the website Drugs.com regarding how long women took Verzenio in clinical studies: "In this study done by the manufacturers, Verzenio allowed patients to live longer without their cancer getting worse. Verzenio, when added to an AI, delayed disease progression for over 2 years (a median of 28.2 months) compared to 14.8 months when using an AI alone." (AI = aromataze inhibiter)

Mermaid007, thanks for the suggestion to look into FODMAPS for dietary suggestions.

I had recently added collagen supplement for it's gut healing effects, but just read that collagen is not recommended for breast cancer survivors: https://marnieclark.com/are-collagen-supplements/. Ugh! I will stop the supplement.

I got the OK to try digestive enzymes (protease, amylase, lipase only). I started a low dose OTC and feel my stomach pain is less. Maybe it's been pancreatic pain, not stomach pain? Hope the digestive enzymes help correct my low albumin, low protein and "floating stools"....and most importantly don't cause harm. I see a GI doctor end of the month.

Everyone's comments are so helpful.

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 Surgery Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy Verzenio Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast
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Jul 18, 2021 03:24PM Spouse4Life wrote:

Husband. I purchased Ostarine from Chemyo for my wife and there were no issues. I had questions about shelf life and storage. They were quick to respond that shelf life was 2 years, and simply store at room temp. My wife hasn’t started yet, as we are awaiting another round of tumor makers, but I’m curious if you are dosing continuously or cycling? My understanding is that it should be dosed continuously like an AI. Any early freed back? Results, side effects, etc

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Jul 19, 2021 11:04AM - edited Jul 19, 2021 01:23PM by Husband11

"Husband. I purchased Ostarine from Chemyo for my wife and there were no issues. I had questions about shelf life and storage. They were quick to respond that shelf life was 2 years, and simply store at room temp. My wife hasn't started yet, as we are awaiting another round of tumor makers, but I'm curious if you are dosing continuously or cycling? My understanding is that it should be dosed continuously like an AI. Any early freed back? Results, side effects, etc"

She is taking 9 mg per day, continuously, and has seen an unexpected drop in tumor markers last month. No negative side effects, her energy levels are significantly increased and she is doing more physical activity and has less fatigue. Can't say for sure its the enobosarm / ostarine, but it certainly hasn't done any harm. Her liver enzymes are within normal range, with the exception of ALT that is slightly elevated. That, was something we anticipated might happen with the enobosarm, so we aren't concerned.

Target dosage per day is 9mg, as the study showed that 9 mg was actually slightly better than 18 mg, and had less side effects. That is a pleasant change from most cancer treatments where they dose high. 9 mg is a very mild dose in the bodybuilding world. Lower than anyone would recommend for optimal results in building muscle or performance enhancing. Another good thing, as enhanced "athletes" are often extreme risk takers.

The beauty of this substance is the good chance of it helping, low risk, negligible sides, and the fact it strengthens the body and bones. After years on aromatase inhibitors, something that fights osteoporosis is a good thing.

As the liquid enobosarm is a little funky tasting, my wife puts the drops into a glass of water and drinks 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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Jul 19, 2021 11:49AM Spouse4Life wrote:

Thanks...I suspect we will be starting this quite soon as well.

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Jul 19, 2021 01:05PM - edited Jul 19, 2021 02:00PM by star2017

Hi everyone. I am due to start Verzenio this week. Do you recommend waiting to see what side effects hit, or do most people take the imodium as a preventive?

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 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 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Verzenio Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant)
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Jul 19, 2021 05:00PM WenInWI wrote:

Hello star2017,

I might wait until first symptoms, at least initially. My oncology pharmacist told me diarrhea would typically start at 3-7 days after starting Verzenio and after about a week of management should improve. I didn't follow Constantine Kaniklidis's protocol, noted in the message at the top, but it seems pretty reasonable to me now in retrospect, including his suggestions for adjunct interventions like probiotics. I think I was overly timid with the imodium at the start because I worried about ending up with constipation, but that never really happened to any extent. I have always responded well to imodium and this has been reassuring....it seems to take effect within a few hours. I do experience abdominal cramping just prior to my bowels emptying - once empty then the pain stops.

I only recently become more aware of the problem of stomach pain, feels like "acid stomach", as distinct from abdominal pain associated with diarrhea. I had no stomach pain the first 18 months, but do now. It's mild and intermittent. I use TUMS, ginger tea, and if I'm really uncomfortable Pepcid AC 10mg.

Good luck with the Verzenio. Hope it goes well for you.

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 Surgery Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy Verzenio Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast
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Jul 19, 2021 06:52PM SeeQ wrote:

Star2017, there are some people on this thread that never had a problem with the big D, others that had pretty severe cases, so I would wait. You'll just have to see how your body reacts. I have used GasX in addition to the Immodium, and that helps with the cramping. Immodium plus includes the same active ingredient as GasX.


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 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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Jul 20, 2021 01:44AM Hopfull2 wrote:

Hi everyone, so for ladies asking how long ppl last on Verzenio, I only lasted 5 months on it. Came off of it July 1st. As I have some prosthesis on in my bones and now some liver mets, so. I did not get very much time in it. I was in Verzenio with letrezole. Who knows, maybe it was the letrezole combined w it that didnt help. So I will be moving on to afinitor with faslodex. Good luck ladies and husbands. Hugs.

E🌺41yes.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/7/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Dx 7/2020, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 9/7/2020 External: Bone Targeted Therapy 1/19/2021 Verzenio Hormonal Therapy Zoladex (goserelin) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Bone, Brain
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Jul 20, 2021 10:18AM SeeQ wrote:

Hopfull, I'm so sorry about your progression and relatively short run on Verzenio. It's so frustrating that these drugs work so well for some, and not so much for others. Best of luck on your next line of tx.

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 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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Jul 21, 2021 05:39PM star2017 wrote:

I had bloodwork done yesterday and was waiting for the ok to start Verzenio. Just heard that my liver function seems off and they want to run more tests.


I'm scared.

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 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 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Verzenio Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant)
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Jul 22, 2021 11:57AM Lili75 wrote:

Hello Husband 11,

I understand that your wife had Ibrance treatment for many years and now is changing. I am looking for testimonies of people who took Ibrance and then changed. My onco told me that if Ibrance doesn't work anymore, I will be given Chemiotherapy. It seems to have other alternatives. I have also other questions posted in the topic: "How long with Ibrance?" Is it possible to share your wife experience to help me and other women in the topic "How long with Ibrance?" ?

You seem to be a great support for your wife which is admirable!

Thanks a lot!

Surgery 11/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Dx 11/12/2017, LCIS, Left, 1cm, Grade 1, 0/2 nodes Hormonal Therapy 12/8/2019 Arimidex (anastrozole), Zoladex (goserelin) Dx 12/9/2019, 1cm, Stage IV, metastasized to bone/liver/lungs, ER+/PR+, HER2- Radiation Therapy External: Bone Targeted Therapy Ibrance (palbociclib)
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Jul 22, 2021 12:41PM Husband11 wrote:

Lili75, I will have to get back to you with the precise answer as to how long she was on ibrance & letrozole before her tumor markers started to consistently rise, then she switched to verzenio and exemestane. I know it was at least 2 years, but I will have to wait until she is home to ask her exactly how long. The verzenio plus exemestane slowly lowered her tumor markers. Imaging never showed progression, but we feared that was coming. After some time on the verzenio plus exemestane, we lowered her verzenio to 1 pill on day, 2 pills the next, and added in enobosarm, and have seen several months of consistent drops in her tumor markers, the latest being most dramatic of 30 and 40 percent drops.

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 23, 2021 03:26AM - edited Jul 23, 2021 03:27AM by Lili75

Husband11: thanks very much! If I understand well, the onco decided to switch treatment from Ibrance to Vernezio because tumor markers increased (to what extend, what was the peak?) before imaging showed progression. It is valuable information because other oncos wait for imaging progression before changing treatment.

Surgery 11/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Dx 11/12/2017, LCIS, Left, 1cm, Grade 1, 0/2 nodes Hormonal Therapy 12/8/2019 Arimidex (anastrozole), Zoladex (goserelin) Dx 12/9/2019, 1cm, Stage IV, metastasized to bone/liver/lungs, ER+/PR+, HER2- Radiation Therapy External: Bone Targeted Therapy Ibrance (palbociclib)
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Jul 27, 2021 01:05PM Kabuki wrote:

I have a question about labs. I’m not scheduled for any lab work. Today is day 14 for Verenzio. I thought labs were supposed to be every 2 weeks initially. I have my 2nd and 3rd injection of Faslodex scheduled and don’t see the oncologist until September. I had a Pet done last week which he has not even looked at yet. Should I be concerned? There is a bone met and a large tumor on the portal vein and vena cava that he is not aware of yet.


This brings back bad memories from my initial diagnosis about all the mistakes that were made. I had to be my own advocate and double check everything or the system would fail me. I had a friend drive me 75 miles to get my port implanted only to find out that the onc’s office never sent a referral and that the procedure wasn’t authorized. I remember countless visits to the lab only to find no authorization and paperwork and having to be sent away. At least the cancer center now draws their own labs.

The phone for medical offices are also a problem. They are all answered by voicemail with a complex system to navigate. Sometimes I get disconnected.

It’s only the beginning and I’m so overwhelmed and exhausted

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) Radiation Therapy Surgery Mastectomy: Left; Reconstruction (left): DIEP flap Chemotherapy AC + T (Taxol) Targeted Therapy Verzenio
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Jul 27, 2021 01:11PM Husband11 wrote:

Lili75 wrote:

Husband11: thanks very much! If I understand well, the onco decided to switch treatment from Ibrance to Vernezio because tumor markers increased (to what extend, what was the peak?) before imaging showed progression. It is valuable information because other oncos wait for imaging progression before changing treatment.

Lili, I think the Onc would not have been able to get her Verzenio if there was concrete evidence of progression. I think the Onc was likely able to justify it on the compassionate patient basis as the switch being because my wife had low blood counts on palbo / ibrance. I suspect that was the technical justification, but not the real motivation.

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 27, 2021 01:16PM star2017 wrote:

Kabuki, I'm not sure about the Labwork, tho I think my mo said she'd check labs every two weeks initially. It's very strange that the doctor hasn't checked your PET! Is there any other cancer center near you or another doc you can see at this practice?

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 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 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Verzenio Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant)

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