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
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.
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.
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).
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.
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.
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.
Abemaciclib continues to be available through Lilly's attractive Expanded Access Program (EAP):
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.
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.
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)
Posts 2041 - 2070 (2,268 total)
May 13, 2021 05:27PM Going2BeatThis wrote:
Deamo1, I drink a lot of water and take Bio K Plus Probiotics (1/2 the bottle in the morning and 1/2 at night). It has helped immensely. Never experienced any diarrhea or stomach problems. Have been on Verzenio for almost 2 months. Good luck
May 13, 2021 09:02PM Moderators wrote:
Welcome, Going2BeatThis! We're sorry you find yourself here, but we're glad you've joined our community. And thank you so much for sharing your experience with Verzenio! Hearing firsthand from other members can be so helpful.
May 15, 2021 09:09PM ChathamLady wrote:
Please realize that everyone is different. I was petrified to start vercezio. It came with 3 boxes of anti diarrhea meds in the starter kit and that put my over the edge. Guess what? I’m in my 4th month and it’s been very manageable. First month was tough but after that watching my diet; knowing my trigger foods; I’m taking maybe 2-4 immodium a week. You could be same or better or worse. If it’s bad talk to your doctor. The dose can be lowered. Good luck
May 18, 2021 12:06AM emac877 wrote:
Thank you both. I have been quiet for a few days on here, a combo of going back to work and the recovery from that and trying to wrap my mind around my PET scan results. I got them back a week ago and the PET scan shows "Multiple hypermetabolic bone lesions on prior exam have healed, now showing no abnormal uptake." What?!!! Does this mean I'm NED?! I have so many questions. I had an area in the right breast near where my original tumor was that shows "diffuse" uptake and the impression reads that findings "could relate to recurrent malignancy or posttreatment findings" and suggests a correlation with a skin biopsy. The CT portion of the study didn't find a tumor but shows thickened skin.
I was out pulling weeds and left my phone in the house when my doctor called so I missed talking to her about this, dang it! I have a message back in to her office. I don't know. Part of my brain is exploding with joy thinking the Verzenio has worked and my bone mets are gone and at the same time, I keep waiting for the other shoe to drop. Does that even make sense? It's amazing news either way. I will update when I find out for sure what all this means. At the latest I have an appointment on June 1st with my RO to discuss these findings.
May 24, 2021 05:02PM Going2BeatThis wrote:
Saw my MO last week. We discussed my fatigue which she believes is attributed primarily to the Verzenio. She is recommending decreasing from 150mg twice a day to 100mg twice a day. Have an MRI and PET scan scheduled for next month. So far my markers are moving drastically in the right direction. Considering that I have only been on Letrozole for 3 1/2 months and Verzenio for 2, I am very happy that my body is responding so well to the protocol. Can’t wait to see if my scans show that the metastasies have shrunk or disappeared.
May 24, 2021 09:04PM HopeandGratitude wrote:
Going2BeatThis-sounds like everything pointing positive!!! Let us know. I have been on 100 mg 2x/day for a year after being on 150 for 6 months. Got to be too much when I had to add faslodex and xgeva and switch to exemestane.....but still on it!!!!!
May 26, 2021 09:51PM - edited May 26, 2021 09:53PM by WenInWI
I've been on Verzenio for 98 weeks. Started out at 150mg, but within short period of time dropped to 100mg due to diarrhea. Scans have remained stable. Was told to follow a low fiber diet to help control diarrhea, plus take Imodium. I followed this diet for 18 months, lost appetite, lost weight, and my albumin and protein levels started to drop. Late January finally changed back to more normal diet with emphasis on protein (meat, poultry, fish), eggs, lactose free diary, whole grains, vegies, fruits nuts, seeds. My diet is now very good, I take imodium 2 mg every other day, and started probiotic. I no longer have diarrhea, but some days have 2-3 formed stools per day. Even with this improved bowel function, my stools are still not normal - they are sometimes pale, and always float. This is not normal. My albumin level remains below normal and I have mild leg edema as a result. B12 was found to be below normal (improved with SL supplement), Vit D level is low normal even on 5000 iu/day. I suspect malabsorption problem. I have mild intermittent stomach pain that I manage with TUMS and Pepcid AC at times. Had endoscopy with normal findings. My oncologist wants me to switch to Ibrance because of the stomach symptoms and low albumin. I'm reluctant due to the neutropenia side effect for Ibrance. I called Lilly Company to ask if Verzenio can cause malabsorption and nutrient deficiency - answer was basically "No". Has anyone else developed nutrient deficiency on Verzenio? Any suggestions?
May 27, 2021 12:31AM SusaninSF wrote:
I'm on 150 mgs in the am/100 mgs in the pm. I vacillate between diarrhea and constipation. I don't think that high fiber is a problem if it is soluble fiber. For example, many on this board and that I know here take Metamucil (psyllium) every day for diarrhea. Oatmeal can also help. Insoluble fiber such as wheat bran or vegetables can cause diarrhea.
My albumin levels are also persistently low. Eating eggs is supposed to help since egg whites are almost pure albumin.
If you haven't been on Ibrance yet, I would suggest the switch. I did well on Ibrance for two years with no noticeable side effects. Verzenio is much harder on the body. Of course, we are all different and our reactions to different treatments can be very different.
Hoping you find the right course.
May 27, 2021 03:20AM Hopfull2 wrote:
hi ladies. I hope you are all doing well. I’m still on Verzenio. Doing good. With the exception of a few bad tummy issues now n then but nothing crazy. I will be going on vacation soon and hope my stomach doesn’t act up. Especially with the food there. My stomach is dec. more sensitive now. I hope you all a beautiful week.
May 27, 2021 10:34AM WenInWI wrote:
Thank you for your response. I think I'll try metamucil and see if it helps. I'm just blown away by your cancer history, all that you've been through and survived. Helps put my Dx and fears in better perspective.
Jun 22, 2021 09:44PM - edited Jun 24, 2021 10:52AM by WenInWI
I have an awkward question regarding bowels/stools, often put into the category of TMI. But it's important to me and I hope someone will answer. My question to those of you who have been on Verzenio for awhile and gained some control of the diarrhea: Do your stools always float, even stools that are solid and formed?
Background: I've been on Verzenio 100mg twice/day almost 2 years now. I followed a low fiber diet for 18 months as advised by my MO team as a way to control the diarrhea. It didn't help much. I also used Imodium. I ended up with low albumin, low protein, low B12. I think these changes may have resulted from the prolonged nutrient deficient diet. For the past 6 months I've been eating a very nutrient rich diet with added probiotics. My B12 improved after starting a SL supplement. But my albumin and protein have not improved. I use Imodium every other day and usually do not have outright diarrhea. So my bowels/stools have normalized to the extent that they are now soft but formed most of the time but they are often bulky, pale or yellowish, and always float. I think this indicates a malabsorption problem (i.e. not absorbing protein and fats) so I've asked my Primary for a GI referral. My question again to those of you who have been on Verzenio for awhile and gained some control of the diarrhea: Do your stools always float, even stools that are formed and solid?
Jun 23, 2021 03:57PM emac877 wrote:
I think that's a legit question and I wonder if it doesn't present differently for everyone. I think for the most part I tolerated Verzenio well. I do have loose stool occasionally, and mainly in the morning. You are right, that does float and have a yellowish tint. I had always assumed it was from the Verzenio because it started about the same time I started Verzenio a year and a half ago. I was never prescribed a diet change but chose to be more vegetarian and focus on known cancer fighting foods like mushrooms and cruciferous vegetables and added herbs like turmeric and garlic to my cooking. I also added flax seed to fruit smoothies and oatmeal. Because of that reduced animal product focus I add nutritional yeast to most meals, not just because it's good but also a great source of B12.
I can tell you on days that I eat less fiber stool typically does not float but is almost always soft and formed. If I eat too much fat, spice or fiber the bathroom and I are well acquainted. I think so much of it is diet and individual systems. I don't think consulting a GI doc is a bad idea. You might try to find protein foods that your system tolerates. Vital Protiens has collagen supplements that dissolve well in coffee or smoothies. They make vegetarian and fish based versions if your diet doesn't include bovine based products. I use those in my smoothies and focus on fish and beans when I can tolerate them as sources of proteins. The new research on Soy is that it it may even act as an aid to the CD4/6 inhibitors and so I use soy in my diet a lot to as a protein source also. Hope that helps.
Jun 23, 2021 06:25PM - edited Jun 23, 2021 06:26PM by WenInWI
Thank you for your thoughtful and thorough response. I did just add collagen to my daily diet as it's supposed to help heal the GI tract lining. Now I'll take a look at nutritional yeast. Every time I consider adding a supplement to my diet I run it past an oncology pharmacist who looks it up for contraindications and interactions with Verzenio. The pharmacists have been mostly reluctant to "approve" any supplement use, but I think collagen is more of a protein food than a supplement. Thank you again.
Jun 26, 2021 04:09AM Hopfull2 wrote:
hi. I hope everyone is doing well. I’m still on Verzenio , I just had a ct scan yesterday. Fingers crossed I’m stable and I get a bone scan soon. I’m grateful to have made it this far. I’m feeling good these days. Just trying to gain my weight back and hopefully my hair continues to fill in from the radiation some fell. God bless
Jun 26, 2021 10:25AM SeeQ wrote:
in your pocket for the ct results Hopefull. When do you find out?
Jun 26, 2021 04:25PM Hopfull2 wrote:
thanks Seeq,,, so i just got my results today from the patient portal. I’m super nervous. Everything is normal other than my liver. Shows low density lesions with segment 8 measuring 1.5 cm and .6 cm. In diameter suspected to represent new hepatic metastasis. I can’t stop crying. It’s Saturday so MO not in office.
Jun 27, 2021 04:36AM SeeQ wrote:
Hopfull ‐ I'm so sorry your scan came back with new suspicions in the liver. It's scary news to find out over the weekend without your MO's input. Try not to make yourself too crazy before you can talk to him/her.
I hope there's a benign explanation. I would guess your MO may want to do a biopsy. If not benign, genomic testing of the tumor may provide additional systemic treatment options. Also, you may be able to consider local treatments, since there are only two spots and they are relatively small. There are two threads with discussions about liver mets (How are people with liver mets doing?) and local treatments (Liver mets: resection,ablation, SBRT, y90...anything else?) Both have very knowledgeable people and loads of good information.
Sending cyberhugs your way in the meantime.
Jun 29, 2021 01:18PM Husband11 wrote:
My wife was really getting fatigued from 100mg 2x daily abemaciclib. So, without telling the oncologist, she started taking 2 one day, and 1 the next day. She also started taking Ostarine (enobosarm). Her tumor markers, CEA and CA-15 have now dropped 30 and 40 percent after 2 months + on this new routine. She also feels much better. MRI and CT show stability. The Ostarine is not prescribed, or part of a clinical trial. It was obtained on her own, as a small phase 2 trial showed some prospect of it working for ER/PR + breast cancer patients. Oncologist does not know she is taking this.
Jun 29, 2021 08:51PM Hopfull2 wrote:
husband. Good news. Hi where do you get the osterine. ?
Looks like my Verzenio might b coming to an end. Since I have the lesions in liver. We are doing a PET scan to be sure. But if it is Mets in liver I will be moving on to Xoleda. But he whats me off Verzenio now, so my counts get good to start xoleda. MO says he thinks the lesions are Mets. Also 3 weeks ago my tumor markers jumped From 50 to 80.
Jun 29, 2021 09:51PM star2017 wrote:
I'm so sorry, hopfull2. Wishing you better results soon.
Jun 29, 2021 11:08PM Husband11 wrote:
Got the osterine / enobosarm from Science Bio sarms. They impressed me with their third party analysis of every batch. Sarms, being a grey market supplement, have a bad reputation for being either under dosed, or not what they are supposed to be
Jul 1, 2021 02:00PM HopeandGratitude wrote:
Husband 11 - can you only get this in Canada
Jul 1, 2021 04:33PM ShetlandPony wrote:
I am not on Verzenio but was just reading this thread as I have to constantly manage diarrhea on neratinib. I take immodium/loperamide and sometimes eat a BRAT diet for a couple days. I wanted to tell you, Wen, that my endocrinologist said that chronic diarrhea can indeed cause nutrition problems because of malabsorption. She prescribed sublingual (dissolving) B12 which helped me feel better. I started eating papaya for the digestive enzymes, and real, raw sauerkraut (natural foods store deli section) for the probiotics, and I think they are helping.
Jul 2, 2021 10:30AM Husband11 wrote:
HopeandGratitude: No, we purchased it from a vendor located in the United States.
Jul 2, 2021 03:31PM SusaninSF wrote:
Thanks for the info about a source for Ostarine(Enobosarm). I've been wondering how to get it from a reputable source. How did you figure out the dosage? Also, did you get the liquid or the powder?
For those who would like a direct link: https://science.bio/?post_type=&s=ostarine
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."
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.
Jul 2, 2021 03:58PM SusaninSF wrote:
Ordered from Chemyo since they had a credit card payment option through MESH.