Abemaciclib Verzenio for Stage IV
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Letrozol was hard on me, so I do understand. However, the various therapies are different in their effects. I am willing to try faslodex which many women say is easier. Faslodex with abemaciclib could potentially be more effective abemaciclib.
>Z<
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zarovka: thanks. i hope faslodex works for you! i am just too attached to my estrogen to suppress it in any way. it is unfortunate that it happens to also fuel my cancer, sure, but the rest of my body needs it. i fully understand that i will die much sooner as a consequence.
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Luce, I totally understand the attachment to estrogen. It is definitely the "feel good" hormone for me too. I continue to mourn that. If you ever do take the plunge in the future for hormone therapy, Cymbalta (the antidepressant) is a miracle drug for eliminating joint pain. I asked my MO what could help me with joint pain that wasn't an opiod and he prescribed it. It also helped with my bone pain.
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JFL: Even though not being on Abemaciclib but on Ibrance, may I ask you how you tolerated the side effects of Cymbalta wrt diarrhea? I just tried Venlafaxine (Effexor, which is the same class of antidepressants) last week and had to stop it, because of extensive side effect. I am afraid that Duloxetine/Cymbalta would have the same side effect. On the other side, I was already able to tolerate the side effects of the antihormonal therapy much better during those few days on Venlafaxine.
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Right now I am only doing lupron which suppresses my estrogen to non-detect levels and I feel pretty good. It is clear now it was the letrozol and ibrance that made me stupid, tired and gave me joint pain and neuropathy. My point is that, for me, the lack of estrogen alone isn't bad.
>Z<
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Luce, Faslodex typically has the fewest side effects of the endocrine therapies and it is more targeted than aromatase inhibitors. so it might be worth considering at some point. I agree with you that it is barbaric to deplete our whole body of estrogen with aromatase inhibitors. But I was able to put up with letrozole while it was working. Z, my first mbc treatment, Taxol. made me post-menopausal. so presumably fairly low estrogen, but I definitely feel better in many ways being off that letrozole. I feel like being allowed to have whatever small amount of estrogen my body still makes, makes a difference. Yes, I just said I prefer these chemo pills to I+L.
Z, regarding the info you copied from Constantine at the top of this thread -- How do you interpret his comments on abemaciclib's efficacy for ILC? What is he saying? That he suspects lobular histology will not make a difference? I am willing to put this drug on my short list of what's next, with a plan to do everything possible to prevent diarrhea, if it makes sense for ILC.
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Shetland - Constantine is extrapolating from Ibrance trial data and from abemaciclib trial data that doesn't adequately segregate ILC for IDC type MBC. He hedges and falls into using big words unnecessarily, which people do when they are worried whether what they are saying is solid. However, the limited data available suggests that ILC and IDC will respond to abemaciclib about the same and there isn't any reason to expect otherwise. Keep it on your list, watch for more data.
I am very glad that you prefer xeloda to I+L. Xeloda is chemo and Xeloda is awesome. Very effective. Xeloda is on my short list, but probably after abemaciclib and/or faslodex. I have some concerns because I took a low dose of a Xeloda like drug (TS-1) in japan. After 3 doses, I broke out in a scary scary rash. I am still going to try Xeloda. I am starting at very low dose when I do.
>Z<
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"Keep it on your list, watch for more data" is just about exactly what my onc said!
Agree with putting X on your short list, and starting low.
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shetland: i asked my oncologist about lobular and abemaciclib last week, and he agrees with constamtine and zarovka, although of course there is ALWASY way less data for lobular. i had both lobular and ductal (both invasive, and both in situ also) on my oriiginal diagnosis, and my oncologist and i suspect my recurrence is lobular. lobular has always felt like such a wild card to me. i even read a paper once that said that while lobular usually responds to anti-endocrine therapy, sometimes (if rarely) it responds the opposite way and gets fueled by it.
as for endocrine therapy. i just have no interest in it. after decades of eating disorders and not wanting to be a woman (or even have breasts at all), i only came to embrace my femininity and be comfortable with my body and being a woman a year or two before being diagnosed. the irony, of suddenly having the option of having my breasts removed, and effectively be put into extreme (since your body of course still produces estrogen in natural menopause) menopause (i am premenopausal. not even peri-menopausal), just as i wasn't interested in either anymore!
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After reading the opening post I am wondering if abemaciclib can still be a possibility after a bout with Halaven ?
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luce - you make a lot sense, as always.
amarantha - the phase I trial of abemaciclib was on a group of women who had had multiple lines of traditional chemo. they had a surprisingly good response on a population where you are almost not expected to get a response. so, yes. abemaciclib may be your best option after a bout with Halaven.
>Z<
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That is such encouraging news, Zarovka. I am glad that abemaciclib can be used as a monotherapy, since endocrine therapies have not been very good in my case. It sounds like we are in the same boat, amarantha, with cancer no longer "functionally ER positive" as my onc puts it. It is great to have treatments on our lists that are not full-on chemo.
Yes, luce, I have seen many articles about tamoxifen promoting tumor growth under certain genetic circumstances, and also that a subset of ILC does not respond. In my case, I think the cancer was de novo resistant and even fueled by tamoxifen, and/or I did not metabolize it properly; while at the same time the drug raised the estrogen level very high in my premenopausal body by stimulating my ovaries, as evidenced by blood tests and uterine fibroid growth. Epic fail. (I'll say here that for many women Tamoxifen does work well.) It sounds like you have a very good sense of what you are and are not willing to do, luce. You are in charge of you.
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Z,
So glad you are in this thread. I appreciate very much your knowledge and for being so good to pass along what you know. Thank you.
I hope you are doing better (I think I read that you were in some pain)
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Hello all:
I have just completed 6 days on abemaciclib/letrozole and wanted to report my experience. So far (knock on wood) I have been tolerating these drugs well. A few little stomach rumbles but that's it. I do experience a weird taste in my mouth. Not sure what that's about. And, I think the letrozole is keeping me up throughout the night - going to switch that pill to the morning to see if that helps. Hoping I keep tolerating this combo well and that it works.
Last year was quite a year for me. I was on the Gedatolisib trial and had to stop after a few treatments because of a terrible rash that was potentially life threatening. Only took the palbo part for a short time too. I decided I wanted to only take faslodex. I feel the Gedatolisib and the resulting issues caused me to be hypercalcemic which then led to needing zometa. I think I the zometa led to the fracture in my vertebrae. These are my theories of course - for what they are worth. Long story short, I was on Faslodex for a little while and that caused some very loose stools. As a result, i feel that the combo of Faslodex with abemaciclib will result and more stomach disturbances than the letrozole/abemaciclib combo. Just a theory.
Maybe when the faslodex pill is introduced (my MO told me it's in clinical trials) that will lessen the stomach issues. I don't get to research as much as you guy but thought I'd share my experience and thoughts since I'm taking this drug.
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Mostcapable - Thank you so much for sharing your experience. Keep it coming. Your experience and theories are more useful than any paper ... I hope this protocol gives you a long easy run.
Please check back soon with updates.
>Z<
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Z, I'm happy to find you here tonight. I've missed your posts on the Ibrance thread and I hope you're doing well. I haven't read through all the posts to see.
My oncologist is enthusiastic about Verzenio and has been considering a switch for me. I've had a 6 week Ibrance break while ill with flu/pneumonia. I was planning on a one-month break anyway due to side effects after 15 cycles on 100mg. > mind-numbing fatigue, heartburn and increasing nausea. Anyway, after considering everything, the oncologist recommended that I remain on Ibrance since it has worked so well for me from the beginning....widespread bone mets and one soft tissue tumor which all appeared to be increasingly inactive at a 3-month PET/CT and now have almost zero uptake. I will begin 75mg. Ibrance tomorrow.
The other thing he's doing is sending off tissue to test for the biomarker indicating potential response to Keytruda. Looks like we will scan in 4 months to see if the Ibrance has kept things under control and if not, switch to Verzenio. I'm happy you've started this thread! Thank you.
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Shetland and Z,
I too am happy to hear that this drug could benefit ILC. I feel like ILC is a bit of the "orphan" subtype which is scary and confusing. More research!
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Thank you Z! I will keep up the updates! Thank you for sharing your knowledge and experience as well!
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Hello everyone
Do you see better results with your RBC on verzenio than on ibrance
Any idea what this will come to Europe
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In the trials Abemaciclib, was harder on the gut but easier on the blood counts generally.
>Z<
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thanks a lot Z.
Does anyone knows when this will be approved by the EU
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I don't know but talk to your doctor. These companies have compassionate use programs. They like to get the buzz in advance of approval. It helps build market share. The point being it's not entirely altruistic, they have a reason for doing this that works for you.
>Z<
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Hello everyone!
While I am new to this forum, I am NOT new to breast cancer. I was diagnosed with Stage 2 ER+/PR+ Invasive Lobular BC with impact to nodes in 2006, at the age of 37. Lumpectomy & 13 nodes removed, plus 4.5 months of Taxotere/Adriamycin/Cytoxan chemo & 33 rounds of breast/node radiation. Started Tamoxifen post-treatment and didn't tolerate well, so took my chances and stopped after 1 month. 4 years later, in 2010, mets were found on my ribs and spine, and ascites in my peritoneum (for which I had 2 separate paracentesis procedures) ...started Tamoxifen back up (along with monthly infusions of Zometa for 1 year before switching to Xgeva injections), but due to SEVERE emotional mood swings was terribly inconsistent about taking it.
Needless to say, after 4 years (2014), my cancer, which had been mostly stable, started to progress. I switched to monthly Zoladex injections (while continuing the Xgeva) and started on aromatase inhibitors (first Femara, then Arimidex, then Aromasin). I had incapacitating bone & joint pain on the first two drugs, and while the Aromisin didn't cause as many side effects, it also wasn't as effective. By this point (2017), my bone scan lit up like a Christmas tree... I had multiple lesions throughout my spine & several on my ribs, hip joints, femur & skull, recurring ascites in my peritoneum and my tumor markers were slowly climbing month by month. It was time to bring in the big guns – so I started on 150 mg daily Ibrance with monthly Faslodex (fulvestrant) injections.
The first month, I was exhausted beyond belief…I barely left my bed and when I would climb just a single flight of stairs, my breathing was so labored and my heart rate so elevated, I would nearly pass out. In addition, my blood counts were completely wiped, almost to the point of requiring a blood transfusion. So, I took a break for a couple of weeks, and we titrated down to 100 mg tabs of Ibrance (again, taking 3 weeks on & 1 week off). Resulted in very minimal, if any, change to my blood counts, fatigue & anemia; so, after a short break, we tried another round at the lowest dose (75mg). Symptoms did not improve, and I made the decision to stop.
Around the same time, I had decided to change oncologists (for a multitude of personal reasons, but mainly because I had been doing research on immunotherapy clinical trials for a year and found the perfect onc in my area). The first set of baseline bone & CT scans ordered by my new M.O. showed marked improvement of my mets (ironically credited to the Ibrance, but not enough of a motivator to continue taking & living such a poor quality of life), so I decided to stay the course of continuing Xgeva, Zoladex and Faslodex for a while. 1st and 2nd months with my new doc showed increasingly elevated tumor markers, and by month 3 it was scan time. My scans were worse than ever and my ascites was starting to impact my breathing & made eating/drinking uncomfortable.
Enter Verzenio (I am the very first patient my onc has prescribed this to, and the clinical pharmacist & triage/oral chemo nurse are also all new to this drug – so, we are learning together). Started on 150mg twice daily yesterday…had terrible rumbling in my tummy last night and quite a bit of fatigue yesterday and today; but, I am hopeful this drug will be tolerable and effective.
Keep in mind that I have been living with MBC for nearly 8 years now (12 years since initial diagnosis); and, while it's been a physical & emotional rollercoaster, and I have been a less than medically compliant patient, I am extremely thankful that my organs are all still clear.
I look forward to following along with all of your journeys and learning more about the research and positive effects of this new medication.
Love to all of you!!!
Jamie
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warriorprincess2006, wow, thank you for sharing your experiences with us here. It is always really inspiring to hear your story, and we send you love as well!
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Jamie - welcome, we're hoping for the best possible outcome and waiting for your next report. it's new to many people so these experiences are of great interest.
>Z<
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Joining this group formally. My wife will be starting on Verzenio + Faslodex combo from tomorrow. She previously progressed on Ibrance + Letrozole combo about a year back and since then on been on chemo. Let's see how this works out.
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Welcome. Good to see you again, but also not. Wish this was over for all of us.
>Z<
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LMWL - I hope your wife has a great response on this treatment! If you don't mind my asking, did you encounter any pushback from insurance since there was previously progression on Ibrance? I'm hoping to go on Verzenio in the future and my onc said not all insurances are approving this sequence right now.
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Hi Moissy, no we did not get any push back from insurance.
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That's great to hear. Wishing your wife well on this
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