Abemaciclib Verzenio for Stage IV
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MZR - One of the questions out there is whether you get any significant effect from abemaciclib after a different CDK 4/6 inhibitor has failed. That's the question behind my question. Certainly, not having taken an CDK 4/6 inhibitor you are well positioned to succeed on this protocol.
>Z<
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Z- My MO has been very careful with an eye, I believe, to future treatments.
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Abemaciclib data review by Eli Lily:
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mzr, thank you for the information. I am starting a clinical trial of abemaciclib and immunotherapy on 15 March. I was very concerned about the diarrhea and am encouraged that it can be controlled. This is also my first CDK 4/6 drug. I am very hopeful that this drug will work for me.
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Workingmom- is there a name for the immunotherapy you will be doing. When I asked my MO she said there wasn’t one for me
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I am not sure which trial Working Mom is on, but here are some trials that combine abemaciclib with other treatments ...
Abemaciclib plus checkpoint inhibitor (immunotherapy)
A Study of Abemaciclib (LY2835219) in Participants With Non-Small Cell Lung Cancer or Breast Cancer
Abemaciclib plus an experimental monoclonal antibody. (Xentuzumab)
This Study in Patients With Different Types of Cancer (Solid Tumours) Aims to Find a Safe Dose of Xentuzumab in Combination With Abemaciclib With or Without Hormonal Therapies. The Study Also Tests How Effective These Medicines Are in Patients With Lung and Breast Cancer.
This trial tests a targeted therapy called a Notch Inhibitor with abemaciclib
A Study of LY3039478 in Participants With Advanced or Metastatic Solid Tumors
>Z<
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Hi all, glad I have stumbled across these posts. My MO keeps bringing up this med as my next option. I did Palbo study, lasted 18 months. I am presently taking Halaven, with excellent results so far. My new MO just seems to only want to monitor cancer antigens, & it is finally the lowest it has been in years. Not sure why I would change, seems SE most common reason to stop Halaven. Reading about this drug gives me more confidence going forward. Thanks for starting it Z.
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mzr119~~Thank you so much for reaching out to me! I was feeling so alone in all this and your post and empathy meant everything. It totally changed my day and even gave me a skip in my step. I will reply more tomorrow, but I just wanted you to know this! More to come tomorrow! With the deepest appreciation for your caring.
Diagnosed 2005 Stage IV ER+ her2+ with mets to spine, chest, neck. Have been on herceptin, femara, fulvestrant, aromasin, tamoxifen.
2-2018: Tumors to liver, now her2-. 3-2018 started Abemaciclib 150 mg., fulvestrant
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nanns- let us know how you are doing. I get pretty unhappy when I don't poop for 2 days So I can imagine how tough it is. You are right to take this very seriously.
Did you start on Imodium and friends before you were experiencing symptoms?
Z
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Nanns, 13 years with Stage 4?! Amazing. Here is to 13+ more! Are you still being given HER2 meds and are you still HER2+?
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mzr119~~ MAJOR congratulations on the liver lesions being 100% resolved! And here's to continued clean reports! You are an encouragement to all of us, and once again, your caring, kind words mean everything. It is amazing that you have been dealing with bc for over 40 years.
My GI issues were finally resolved with MiraLax but that was my own choice, not directions from the onc/clinic. I had to laugh when you said that you would still be constipated over a year later if you'd been on that regimen. Thank you for the affirmation!
I was interested to learn about the heartburn aspect and to be more aware of it. Also a great recommendation for checking for interactions with other substances.
The biggest thing I've noticed in my 2 weeks on Verzenio is my sense of taste, mostly that most foods are "flat." I never salt my food but had to do so last night for the first time. Mmmm, flavor.
And although we can take Verzenio with or without food, I am doing some experimenting in the morning. It seems if I take it without food I feel queasy. This is under testing, though.
I see you are her2+. Have you ever been on Herceptin?
I wish you continued 100% resolved reports. And thank you again for reaching out to me. I had felt so isolated.
Diagnosed 2005 Stage IV ER+ her2+ with mets to spine, chest, neck.Radiation to left iliac wing November 2016
2005-2018: Herceptin with femara, fulvestrant, aromasin, tamoxifen.
2018: Tumors to liver, now her2-. Off Herceptin, Now on Abemaciclib/fulvestrant
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Nanns R- Happy that I could be of help. That's what these boards are all about. I have gotten such good information from so many here. Please don't hesitate to ask any question you may have or voice a concern. The sisters on here are some of the most giving, compassionate women you will ever know!!
I also have really lost much of my sense of how things taste. This is especially true for anything acidic, such as tomato sauce. I also find I can't eat a lot at one time. Consequently, I have lost about 15 lbs over the course of this treatment. I have a very dry mouth which is helped by the Biotene dry mouth rinse.
When I started abemaciclib, it had to be taken an hour after eating and I couldn't eat for another hour. This was often a problem. I prefer taking it either with food or shortly after. I really have not experienced nausea in taking it.
Please stay in touch either by messages on the board or PM messages. You should never feel isolated.
I have never been on Herceptin. Letrozole served me well for over 2 years. I also have been on denosumab monthly for more than 3 years and now bi-monthly. I have never experienced a problem with those injections.
Good luck with this treatment. It's really very doable.
Marie
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I am on abemaciclib monotherapy and, for whatever its worth, am not at all experiencing dry mouth. I suspect the oft-reported dry mouth and dry eyes are due to estrogen deprivation from fulvestrant, letrazole, or tamoxifen, not abemaciclib itself.
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zavorka: Doing great now in that department. MiraLax saved me on Day 10!!! (self-imposed treatment). Thank you for caring!
JFL: I was on Herceptin for 13 years! Recent liver lesion was very her2- !!! So I'm off Herceptin now. Thank you for your great wishes!
I have the best hopes for all the sisters I'm meeting here!
Diagnosed 2005 Stage IV ER+ her2+ with mets to spine, chest, neck.
Radiation to left iliac wing November 2016
2005-2018: Herceptin with femara, fulvestrant, aromasin, tamoxifen.
2018: Tumors to liver, now her2-. Off Herceptin, Now on Abemaciclib/fulvestrant
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I had to call in again to work this morning because the diarrhea started at 2am. I took one lomotil and the diarrhea continued off and on until 5am which is when i get up. I texted that I would be late due to side effects but would be there by 10 and call if anything changed. More diarrhea happened. I took 3 lomotil and slept a couple of hours and called in for the whole day. I know that 3 was extreme but I needed it to STOP. I couldn't focus my eyes and was very dizzy so work was definately out of the question.
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Sorry y'all, I have to post in segments because I lose what I write if I don't. I'm doing the brat diet and still continue to have issues. I called the diplomat 24/7 help line that always has an oncology pharmacist and nurse on duty to help with drug problems. She said if I have IBS and now take Verzenio that it is always going to be a problem. She suggested taking one immodium every morning and also in the afternoon without fail. She said to do the brat diet and nothing with sugar, extra ingredients like frozen dinners or pizza. No high fiber stuff. Everything as natural as possible. Basically then I can start adding in one food at a time until I find what works. I am going to have to research an easy healthy whole food diet and make some more big changes. I will do that. It will be hard now because my brain is just foggy and it is very hard to think and function at work.
I told her about our thread and told her everything she suggested is here already. I told her about the women taking this drug and the real life experiences and very helpful information that you provide. I thought it was funny that I called them "the experts" and y'all are already more of an expert than the drug supplier itself. I want to talk about the lack of functioning at work but have to get off the computer right now.
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spicedlife: so sorry; i certainly know how abemaciclib-induced diarrhea feels, and how relentless it can be. but your nurse might not be right: i was diagnosed with IBS 20 years ago and have had symptoms on-and-off (but my diet is pretty good, and used to be totally "clean" until recently, when i stopped believing diet alone could save me. to be sure, i think it is crucially important, but i am no longer willing to deprive myself of, say, fruit (because too much sugar) or a little gluten-free bread, now that my prognosis is so short), and still i am happy to report that the GI symptoms have for the most part abated after a few weeks on the reduced dose of 150mg (i take it as monotherapy, so 200mg is the regular dose). i still get that stabbing pain in my guts sometimes but my bowel movements are relatively normal. so much so that i considered going back up to 200 mg again, especially since i recently stopped taking cyclophosphamide and think that cyclophosphamide was a huge factor in why i had reacted so violently to abemaciclib. but i saw my oncologist today, and seeing that i am relatively small (120 lbs--and about 5 pounds of that being pleural effusion fluid-- at over 5'9), he thinks that i ought to continue on 150mg in order to have less side effects--nausea, lack of appetite, fatigue--in general. (my appetite is much better on the reduced dose, and food no longer tastes strange and disagreeable. i think that, again, the CP might have been to blame for much of that.) he is pretty sure that if it is going to work for me eventually (no sign so far), it will work at the 150mg dose. i am still wondering about that (i of course want to give abemaciclib the best chance of working, since there's nothing else i'd consider taking at this point, and my cancer is very advanced) but am going to go with that, although he has contradicted himself before, saying that 200 mg would be the dose most likely to be effective as monotherapy. i know from the insert and studies that weight is never figured into dosing, which of course doesn't mean that it might not be a factor, but simply that no one yet knows and that the dose-recommendations are the best guess.
i still don't want any imaging (because of radiation; i feel thoroughly over-radiated as is) so we don't really know what's going on inside of me since the last CAT scan in mid-november, which showed mets to pleura, both lungs, omentum, lymph nodes, pericardium, spine, pelvis, and ribs. i have funny new symptoms--ice-cold right hand, for example--so it may be elsewhere also.
my liver function and kidney function were perfect 5 weeks ago (after about 4 weeks on abemaciclib). i had another blood draw today, so we'll see if i am maintaining that.
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Luce, I don't even know what to say. I hope the abemaclid works for you and there i no reason to think that it won't. Truly there is no information about it because it is so new. The best info is here. Period. I am going to tell you about my bowel movements and I hope it makes you laugh, I'm laughing right now. I agree with you about the ibs. The most exciting thing in my life before this dx was that I felt good most of the time. A happy stomach makes a happy Jenny. I eat pretty healthy and actually prefer to because I feel good. Sorry, sidetrack. Finally I was regular. Same time every day and I was ecstatic. My ibs was not a problem.
I am happy for you that you can enjoy fruit and good stuff like that. Enjoy! There are so many wonderful things to eat and I don't mean sugar. I am sure as heck going to eat my oranges and berries and mangos as soon as possible.
Here we all are. I am telling you all about normal wonderful bowel movements and really really bad ones. I wear a diaper (or whatever you call it) to work, church, everywhere. That really is so funny to me. I'm glad it is funny because for the last two years the depression/anxiety was my life. It is gone now. Tears have come because of the cancer drugs I take but it is wonderful and funny too. I literally didn't cry or have emotion about anything. Boy, do I now. My personality has come back and my coworkers think I'm funny. I hear them laughing all the time. I work in a call center and the people I help love me or they get offended because I say whatever comes in my mind. If someone calls and goes on and on about the fees we are causing them because of blah,blah,blah I suggest that if they wrote down what they spent and subtract it from what they deposit and then when the money is gone it is amazing how we quit taking their money. By the way y'all, I return the most fees and money out of anyone in my call center. I love to do that and think it is the right thing to do in most cases. I am sure that God keeps my job for me. I am rambling, sorry.
Love to you all, sisters.....Jenny
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after a few weeks of no major GI symptoms, i am having watery diarrhea again today, with all the distinct abemaciclib-characteristics: sudden, explosive, totally unformed, distinct pain in the guts before (but for hours before, so it doesn't serve as timely warning),...and i can tell i am not done yet as that gnawing pain continues, along with the mild chills and moderate (and maybe cancer.caused) malaise. no idea what triggered it; i haven't eaten out or tried a new food or anything like that. i am definitely not upping the dose again. i seem to tolerate the dose i am currently on reasonably well (i am very tired, but was before abemacicilb also, so it is hard to quantify how much the drug may be contributing), but definitely am not side-effects-free. and, no, this is not good old IBS; the severity is on a whole other level.
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thanks for the update luce. Hang in there. Thinking of you.
Z
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Just wanted to share that I’m on cycle three, finishing week one and I have zero side effects. On cycle two I had slight discomfort or gas pains and this month they are gone. I had also experienced that “need to go” feeling the past few months and that has completely subsided. I’m thankful for this medicine and I pray that when I scan next month - the scans show it’s working!! I’ll keep you posted. Don’t be scared of this medicine
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Good evening ladies, just wanted to check in and say that I am finally feeling well on abemaciclib. I am on week 11 and it looks like if I stick to taking the lomotil, loperamide, budesonide and not miss any doses of those, I can keep the diarrhea in check and cut down on the belly pain substantially. I have a PET on April 5 and hope, hope, hope that I have some good, happy results. In the meantime, DH and I put our Spain trip back on the agenda, since I have felt so well. Leaving on Sunday!
Donna
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Mostcapable - I really appreciate your post. We're trying to understand the full range of experience on this drug.
Donna - Go Girl! Thanks for the update. Keep usposted.
>Z<
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I've been reading some of your posts. Just looking for a plan for when Xeloda decides to stop working. My question is does this make your hair fall out and is it pills or infusion?
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Dianarose - Pills, no hair loss. Diarrhea can be really serious but seems manageable. Not a bad option.
>Z<
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Hi, everyone! Sorry I haven't posted in a while. I started a clinical trial of abemacliclib and immunotherapy on 15 March. I have had a handful of bouts of diarrhea since then which are controlled with Immodium. I am thinking that dairy products tend to make the diarrhea happen so I am trying to cut milk out of my diet. Other than that, the side effects have been minimal. Just some fatigue and some general stomach upset. I am hopeful that this medicine will get me back to NED. I am grateful to hear that others are doing well that have been on abemacliclib for a while.
Christine
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hi, i have been having brutal GI pain (causing sleepless nights) and watery diarrhea. also feeling generarlly very ill--chills, weakness, etc. so the GI issues may be abemaciclib or partly my poor condition. also very poor appetitie; eating is a chore.
as for the lady who asked about abemaciclib a few days ago, it has been causing my hair to shed dramatically and become very thin. (my hairdresser, whom i saw last night, agrees.) that effect has gotten more pronounced the longer i have been on abemaciclib, so i don't think it's going to improve again after an adjustment period. every time i reach into my hair, i come away with dozens, and there are strands everywhere, which is kind of gross. in my case, it cannot be blamed on anti-estrogen therapy since i am not taking any, only abemaciclib as monotherapy. it's a common side effect of abemaciclib, according to the insert. but who cares at this point?--i don't.
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Christine- You are following an interesting course of treatment- tamoxifen for a year (nearly) and then abemaciclib with Keytruda. You have lots of anti-estrogen therapies still open to you, obviously, from femara to faslodex, but I wonder if your MO is thinking its good to break them up with something different in between? And personally I think it is exciting to consider that abemaciclib may make immunotherapy work on ER-positive MBC. So I am very interested in the side effects and how the trial is progressing, if you hear anything from the docs or nurses, please let us know! I check for any updates on the JPCE trial daily, because the numbers put out last December looked good but were very early...
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I’m so sorry I didn’t reply as I never got a notification. I went from Ibrance to Verzenio. Not sure how it’s working because my tumor markers went up from 32 to 49. Did you have other questions? I’d be happy to answer
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I'm so sorry I didn't reply as I never got a notification. I went from Ibrance to Verzenio. Not sure how it's working because my tumor markers went up from 32 to 49. Did you have other questions? I'd be happy to answer
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