Abemaciclib Verzenio for Stage IV
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Mostcapable,
That is great news. So are you saying that you failed on Ibrance, but succeeded on abemaciclib?? If so, what was the ibrance combined with, and for how long did it work?
Edit: It looks like from old posts that you only were on ibrance for a short while, as part of a clinical trial, but had to drop out of it. I was hoping you were the first evidence that switching from a failure on ibrance, but abemaciclib would work.
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Working Mom. THRILLED to have you here. That trial is of interest to many. A 2 point rise in TMs over a month means nothing. At all. Immunotherapy is frequently provokes a flare in TMs when it is working. I am with your onc on this one.
Please keep the updates coming!
Great trial. There is a great article in Nature on the tremendous synergy between CDK 4/6 inhibitors and checkpoint inhibitors if you want to roll up your sleeves and get wonky.
>Z<
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Z,
Thank you so much for that information! It gives me hope the trial is working!
Christine
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And I want to add that, by a flare I mean a 30+% rise in TMS. Oncs have different ideas of what it means to have a change in TMs. Depends on the TM. But generally the change has to be 30%+. Everything else is just normal variability that means nothing. And then when you do get a change that is deemed significant, there is really no way to say if it is a flare due to response to treatment (not the usual thing, but still frequent) or progression.
Many people feel that TMs are more a form of torture than a diagnostic tool.
>Z<
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WorkingMom-
I am so glad to hear that immunotherapy is being tested alongside Verzenio. I am nowhere near as knowledgeable as others here but wanted to chime in about TMs. I started Verzenio and Faslodex in mid January. My TM was 462 . After 5 weeks it was 279 and at 8 weeks it was 242. All much, much higher than your numbers but heading in the right direction! Sounds like you are doing great and the small variations are really insignificant in the big picture.
Keep us posted on how things are going. It seems that immunotherapy provides so much promise for us. I am at the beginning of this journey and want (and need) to know that there will be treatments out there for the future.
Donna
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Z,
Thank you for that information about the changes in tumor markers. Before I started the trial, there were 2 areas in my spine and one in the lymph nodes in my abdomen where the cancer grew by a few tenths of a centimeter. It was enough of a concern to change my treatment from just taking tamoxifen only. It's good to know the 30% threshold for future reference. I've been doing pretty well about a month in and it is nice to be monitored more frequently even though I have to drive 3 hours each way for treatment.
Donna,
Thank you for the update on your progress. Glad to see your TMs are trending in the right direction! I will keep everyone updated!
Christine
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is anyone here on abemaciclib plus keytruda?--it is an option for me now (i was approved by Merck's patient assistance program) but i am hesitant, since the side effects of systemic keytruda can be severe and definitely need to be treated with steroids, and i am disinclined towards steroids. one of the more common side effects is pneumonitis, and getting that would pretty much finish me off at this point, since my lungs are the least-functional part of me. on the other hand, for best effect, keytruda is only worth trying during the approx. (when taken as monotherapy) 7-month abemaciclib-efficacy window, and rather sooner than later, according to my oncologist.
to have more info to work with when making the decision, i was hoping for the 12-month results of the JPCE trial (is that the one you are in, Christine?) of that combo for metastatic breast cancer being released at the end of the first quarter of 2018, but it wasn't. my oncologist thinks it may be published at the end of may.
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Thanks all!
Husband 11 - I wish I could provide that info to you. Ibrance was held and the trial drug was held because they weren’t sure which caused the reaction - it was likely the trial drug. So - I wasn’t on ibrance long enough to see what it could do. Sorry I can’t be of more help!
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I know that it is against the norms of this site for a husband/caregiver to comment, but my wife has not felt up to joining the board. A little background.
Diagnosed with Lobular Cancer in her left breast in September 2016, Kristi (60 year old) decided on a lumpectomy, and chemo. Did the surgery and began the "Red Death". By June of 2017, she was complete with the chemo, and decided not to do radiation and instead, opted for a Bilateral Mastectomy (July 31st, 2017). Her PET Scan was clear at that time. By November, all was back to normal. She was back at work, as was I.
Fast forward to February 2018. She started having pain in her right side around the bottom of her rib cage. Had a full blood panel run and it came back with liver function issues. MO scheduled a CT, then liver biopsy (2 large liver tumors), New PET Scan (showed liver mets, too many to count, plus the 2 large liver tumors with the biggest one at 7CM, and bone mets in multiple locations)...diagnosed with ER/PR+ HER2- Stage IV Metastatic Breast Cancer. MO prescribed Verzenio 150MG with Femara starting on March 23rd, 2018. We just completed 4 weeks. The large tumors have gotten larger. Her blood count is bad, and she has an infection. MO stopped the Verzenio today. We will do a CT to confirm the change to her liver. When the infection is cleared and her blood count is closer to normal, we will switch to Xeloda and Taxotere.
Kristi (now 61 years old) had no diarrhea, but did have the neutropenia. The pain from the large tumor kept her on consistent pain meds for the last 45 days. She had a bad experience with Fentanyl ( She became a fall risk and fell 3 times) and it was ceased. Fatigue has been bad, and she mostly wants to sleep.
We are unhappy that first line did not work, but I am not writing this to be discouraging. It will certainly work for others. I just wanted to add our story to this particular subject for consideration.
Our MO indicates that this MBC is being aggressive and wants to get the liver mets under control.
God Bless you all and prayers for each of you.
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Dear Texan,
Xeloda and Taxotere is a great, aggressive approach to your wife's tumor volume. You will most likely see great results.
Is her fatigue mental or physical? Stage 4 is a tough diagnosis, and when you are having progression - well, it's just hard. How is she managing the neutropenia?
Welcome to the club no one wants to join. Hang in there, mister.
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It is definitely not a club you want to join, but there are a lot of super quality people on these boards. Thanks for responding.
The fatigue is mainly physical. Sleeps all the time. Gets tired very quickly.
Mentally, it is the same as the chemo brain she had last year on the "Red Death". It is hard for her to concentrate, and doesn't like to talk to, or with anyone. She was fortunate in that she has disability insurance at work and has taken advantage of it. I DO NOT see how so many women that have MBC continue to work. They are so strong....incredible.
On the neutropenia, Doc is going to prescribe something to treat it. Can't recall the name. This is the second infection she has had since starting the Verzenio.
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Texan I am sorry to hear of your wife’s diagnosis and that you did not get the results you wanted from Verzenio. It sounds like you have a good new plan in place with Xoleda and Taxotere.
I also have lobular breast cancer, originally in left breast and now metastasized to liver. There is a good site for a new organization Lobular Breast Cancer Alliance specific to lobular breast cancer that you may want to check out I think it is www.lobularbreastcancer.org. They have good information on research and other inspecific to lobular.
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Texan, those of us who keep working may be more stubborn than strong. 😉 But the true heroes are those like your wife who are charting new territory with these treatments. We all learn so much from her experience.
I hope the new treatment gets her back on her feet. Hugs. Pat.
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Hello all,
I am new to this forum and did not portray all the drugs and treatment cycles I've been through since 1992. Right now I am on Abemaciclib (400 mg per day) and Faslodex injection in each hip every two weeks. I have currently peritoneal carcinomatosis (tumors in the lining sac that holds your organs in place). The mets continue to creep around my body, from liver to bones to lymph. The Abemaciclib drug seems to trigger vomiting. So here are my questions:
Would a lower dose per day be just as beneficial?
What are your best methods for keeping nausea at bay?
How can I best tolerate this drug, as I am determined to see it work?
Thanks, twylamira
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Twylamira-there is a thread for peritoneal mets. You might get some information there.
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twylamira, I started MBC with mets to the bones in 2013. In December of 2016, I developed lesions in the liver.I have been on a clinical trial of abemaciclib and Faslodex since January, 2017. Initially, this was a 3 drug trial, but I couldn't tolerate the 3rd drug. My dosage of abemaciclib was reduced to 200 mg a day. My last scans - MRI and CT- showed 100% response to liver mets. They are no longer visible. I have found this treatment very doable. Maybe it is because my dosage is lower than when I started. I have never experienced the vomitting, no matter what dose I was on. This is supposed to be a typical side effect. I do experience fatigue with this treatment, but I am also 76. I work part time- 15 hours a week, and have been determined to keep my life as "normal" as possible. My worst side effect is neuropathy in my feet. I do find that the other side effects such as diarrhea have lessened. Hope this information is helpful.
Marie
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Tywlamira...my wife took Zofran, which seemed to handle the nausea. I would hope that it worked on vomiting as well.
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Hi Twlamira- I have had mostly the SE of diarrhea with this med, but also some nausea and vomiting occasionally. I find that if I get on top of the nausea right away with some Zofran, I can avoid the vomiting so you might want to give that a try.
Texan, my best to your wife! I am sorry she had problems with Verzenio but from other people on these forums, I hear that Xeloda has been effective for many. My MO mentioned it as a possible next treatment for when Verzenio ultimately stops working. As far as working is concerned, I am looking at Medicare since I am turning 65 in August and finding that the Part D drug plan is totally inadequate for cancer meds such as Verzenio. I don't think I can afford to quit and lose my wonderful insurance plan. I'm not sure how people manage!
Donna
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Thanks all. I will look into the peritoneal forum. I keep thinking that 400 mg is a lot of drug, for someone who never took aspirin! Praying that all of you (and me) recover soon.
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Thanks, will check it out
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LongTallTexan - I believe strongly that the caretakers have been some of our strongest contributors on this site. The moderators seem to agree with me when I have discussed this with them, yet they don't take down that banner at the top of the forum. In any case, I've never seen anything but support for caretake participation. You are welcome her. We hope to hear soon about your wife's success on Xeloda. The thread called "How are people doing with liver mets?" is a good one for you to check out. Very active. People moving working through different treatments and sometimes that can be a great community to get perspective on your options.
>Z<
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LongTallTexan,
Z mentioned that the banner seemed to exclude you. I'm glad you are here. You have a way of discussing your wife's condition without dwelling on fear.
That's the only reason (IMO) that we circle the wagons here. Some caretakers come on and talk about how distressed they are, and how much fear they are experiencing, and that just reminds us of what we are doing to our families. Not cool.
Jennifer
PS: I am very much hoping not to start a big long discussion of who "belongs" here and who doesn't. If you don't like a topic, block it. If you disagree with a contributor, block them. The autonomy is thrilling. About four years ago, this list had a rancorous argument about admission standards. It was ugly, and distracted us from the goal - mutual support.
I re-read this and it sounds bossy. I don't mean to be. I just love this dang list and everyone on it, and if we fight, it hurts my heart.
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Thanks Z and Jennifer,
I am trying hard to only view our fight with this EVIL disease from a positive place. The main reason for this is all of you. I see no one doing a "poor me" thing here. I only see strong women seeking to help one another battle this devil. I stay positive for my wife as well. Our kids can't see or hear me go negative. We also have an MO who is a wonderful woman and doctor. Her staff and support are the best. They call us at home to check on Kristi's well being. I know that they love her and will work hard to treat her cancer. The group is Texas Oncology. We had an appointment with MD Anderson back on April 6th, but cancelled. My wifes cancer was being very aggressive and we needed to get started. We reserve that appointment for the future if it is needed, but our current doctor will always be the lead.
I have a BFF whose wife is losing her battle with Multiple Myeloma. They ran out of options this week, and will go home for hospice. She was being treated at one of the best cancer centers in the country...the START Center in San Antonio. They took a trip to Mayo in MN a few weeks ago, and they couldn't help. Like all of you...I HATE CANCER...in all it's forms and makeup. We have lost so many colleagues at work to various forms, as well as some of my friends. Thank you all for allowing me to participate. I will be focused on the Liver Met and Xeloda groups from now to the end of that line. God Bless you all and keep up the fight.
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Hi Donna!
I am concerned about Medicare when we arrive there. We still have 3 years before 65. My insurance has been wonderful. Covered Verzenio without a co-pay. I was stunned, but very happy. I have high hope for the Xeloda. I am concerned with the side effects, but you just deal with them as they occur. From these forums, I have already ordered O'Keefe's Working Hands and Working Feet cream, and also ordered my wife some memory foam Sketchers Flip Flops. I will be planning on how to deal with her toe and finger nail issues if they arise. I learn something new on this board everyday from all of your wonderful, strong women.
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LongTallTexan, welcome. There are good reasons for that banner at the top of the page and over the years some of us have seen scenarios play out that made us see first hand what those reasons are-- but they don't apply to caregivers like you. It is obvious you are here to be a positive force. I have been getting my care from Texas Oncology for eleven years now. Like you, I have not felt the need for second opinions. My oncologist consults the other oncologists there at their weekly roundtable case review so it's like you get second opinions built into their care.
I was on Xeloda for three years and was active on the thread, wrote several posts with tips on managing side effects that seemed to help a lot of people. They are searchable, if you are interested. It was a good drug for me but it is not easy at times.
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Thanks lulubee....my wife is fighting off an infection right now. We can't start the Xeloda and Taxotere until we have that under control. Our MO consulted with a colleague at SW in Dallas about Verzenio before we made the decision to try it. Our MO also was going to call the doctor at MD Anderson before we made the decision to cancel for now. Our MO also spends at least 45 minutes with on every visit. Sometimes more. She has called us on weekends out of concern for Kristi's pain management situation. The main liver tumor is on the surface right under her rib cage. It has been hard for her to breath. To cough is very painful. It has been hard to balance pain meds with their bad effects and relief thus far. We have to get this tumor shrunk in order for her to get off the pain meds. Just keeping up the fight, one day at a time.
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Bump...
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Long tall texan. Im not usually on this thread but I read occasionally because I'm interested in other TX I may need soon. I liked what you said about your wifes MO. I live in the Dallas area, I'm not with Tx Oncology but may need to change soon. Would you mind sending me a PM, I'd like to know her MO name. She sounds very good. Thanks
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Hi, I am not new to BC.org but kind of new to this drug, Verzenio. I started this last week and on the 7th day, started having nausea. Taking Zofran anti-nausea medicine makes me tired. Anybody has experience with any other anti-nausea medicine that is more tolerable? I am hoping to continue this as a monotherapy, since AI gives me horrible joint pain.
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S3K5: Hi, I have been taking Verzenio as monotherapy also (I don't like estrogen blockers either), and on the standard monotherapy dose--200mg--I had extreme diarrhea after taking it for a week (I started in mid-January). I tried to tough it out since the anti-diarrhea meds made me sleepy, but the diarrhea did not resolve and I had to reduce the dose to 150 mg, at which dose the side effects became much more tolarable. I sometimes toy with the idea of going up to 200 again, but I still get diarrhea often and badly enough (but no longer constantly) to keep me from doing that. 150mg should be an effective dose, and if the side effects of 200 mg stay unbearable after a month or so, I'd go down. I had nausea also but it was only mild, so needed no treatment, and paled in comparison to the diarrhea. I hear ginger is a natural anti-nausea remedy. Good luck!
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