Abemaciclib Verzenio for Stage IV

Thanks @seeq !

This is amazing information:

A time-dependent covariate analysis was performed to examine the association between current dose level (150, 100, and 50 mg) and PFS. Compared to being treated at the 150 mg dose level, there was no apparent difference in PFS for patients reduced to 100 mg (HR [95% CI]: 0.764 [0.467–1.251]; 

p= 0.2849) or to 50 mg (HR [95% CI]: 0.985 [0.511–1.902]; p= 0.9650)

Why would any doctor prescribe 150 when 100/50 works equally well with less side effects unless there are some other studies that show greater efficacy of 150

@seeq I understand your hesitation about a further reduction of this med. There is a small part of me that is a little nervous about my reduction to 50 mg, but a larger part of me that is thankful I feel better and can do more. It is all about how you live and what you want out of life. If I was younger, I would not have gone from 100 to 50. At 71 years old and both my DH and I are retired, I feel good about my decision. It has been 8 1/2 years since my original de novo Stage IV diagnosis so I am a bit weary of the fight. But if others can learn from me then all is good.

Kabuki and Marcials1 - Hi. I've took a break beginning Christmas Eve, and was planning it only for 3 days, but then was just feeling so fatigued and also happy to not be reading the news or BCO (I don't equate the two), that I decided to continue through this past week-end. Haven't been feeling the best. I think it's a combination of the season, the weather, and side effects. Lots of fatigue, body aches, stomach and headaches. I'm still not great, so will comment more later. Kabuki, I just saw your post for the first time. I will answer in a day or two. Also, interesting to read about the lower dose info.

Going to see the dr on Wednesday the 8th. Have to get Faslodex shots and Zometa on the same day. I've never done that before and am dreading it, but I did get out of getting the shots the day after Christmas - an idea I just couldn't wrap my head around. The trade off was getting them this coming Wednesday along with the Zometa. Don't know if I made a wise choice or not. We shall see. Both the Zometa and shots give me real problems, so …

@marcials1 Yes, I was dxd denovo 8 1/2 years ago. I had mets to bones and liver. I have been stable for almost a year now on this treatment. I have scans Feb 4th so I shall see if it continues. I am content on 50 mg. My D is definitely calmer and I am almost "normal" sometimes which is a treat (isn't that sad?) My labs looked great today. My blood count is always low, but my oncologist says as long as they're consistent she is fine with that.

@threetree I had my Zometa and Faslodex both today and I am home now. I feel fine. Usually we go out to eat afterwards but with my DH still recovering from this cold we went straight home and I fixed us a late lunch. Usually my SEs start tomorrow but they only last a couple of days. I would rather get them done on the same day rather than take two trips into town.

Thanks for info seeq & intolight.

Another question for Verzenio people - and WARNING: this may seem like too much information! I have noticed that I go through a stomach ache/D routine. Typical is about 3 days of constipation, then 1-2 days of normal, then 1-2 days of cramping and D. Then we start all over again. Anyone else?

Thanks…..

@intolight We all have our cycles don't we? I think I eat well but maybe I really don't. I think I eat too much bread/carbs. But I don't really know if that does anything really. I'll just keep going with the flow. If I tell my onc about it they will just write it down on their notes and not give me any advice one way or another. Thanks for your input. I may try the Colace.

Marcials1 - My post is long too (sorry), but I'm explaining my whole thing here for you:

I used to think about getting second opinions, just because it sounded wise, plus I had just been so shocked and scared by my original diagnosis back in 2018, that I wanted to make sure that yes indeed, it really was breast cancer. I never did anything about it for a couple of years, because it seemed like a hassle, in spite of wanting to know. I just figured they must have been correct here with their diagnosis. There are many other centers in my area, but they are all farther drives that I really didn't want to do. I love that I just "go up the hill" as I say, about 2 miles to my center and have never really had any desire to drive elsewhere. My center has the best reputation here anyway. I guess around 2021 approx, I did start to look up other local highly rated oncologists at other places and started making notes about them, and also got some names from others here who live in my area, but I didn't act on any of it. (I was just never super comfortable with the oncologist I had been assigned to at my center.) Well, somehow on this site, I learned from Weninwi that she did virtual visits with the Mayo Clinic in Rochester Minnesota, so I got some very helpful back and forth from her about her virtual doctor there, etc. I went so far as to contact them, request Wendy's doctor, and then try to set up an appointment. It was my understanding that Medicare would cover it. Well, just at that time, Mayo told me they were no longer doing virtual second opinions and that I would have to come in person. That was just not going to happen! They said it was a change after Covid improved. I have no idea what they or other places do now in terms of virtual second opinions, as I gave up the idea, figuring they'd all probably be about the same. I also realized that so many places follow the same "standard of care" that it was doubtful anyone would really do anything dramatically different. I figured they'd likely just confirm what I've been told here.

I went back to looking up local names and asking a friend who drives me, if she would be willing to drive to any of these other local places. I also started having concerns about hurting my then onc's feelings if I switched or got another opinion, etc., but all the while I was getting less and less enthralled with her abilities and "take" on my situation. Then that oncologist that I'd been assigned to and had at my center for over 3 years at that point, went on maternity leave. I thought it was my lucky opening and time to start making some appointments at these other places. Lo and behold though, the oncologist that my current center assigned me to, during the other one's maternity leave, turned out to be wonderful and I felt like if I could stay with him, I could just stay at my current center. I asked the patient relations people if I could permanently switch to the temporary oncologist and they told me they had put all switch requests on hold for 3 months due to "post-Covid" staffing problems, etc,. and that I would have to return to my previous oncologist as she got back from maternity leave, but could make another request later. That of course seemed like another super hassle and complication, and again, I was concerned about hurt feelings (I know that shouldn't have mattered), so got worried. I wound up finding names and email addresses of "higher ups" at my center and wrote a joint email to all of them, as I didn't really know just which one would have the power to deal with my issue. I told them how I really wanted to stay with the temporary oncologist and not switch back, because I'd become so comfortable with him, and how I had tried to work with patient relations to no avail. Within no time, one of them got back to me, and told me that my request could and would be accommodated, and I have been with the "temporary oncologist" ever since and he is now my regular oncologist. I am very happy with him, and have yet to get the urge again for a second opinion, but who knows. I've been fine with him for about 1.5 years now, but I always keep an open mind.

(Marials1 - He is also the one who is locating info for me re Zomea, as you and I have talked about before. He's still doing that and told me that all of the original research and data is older, because they started studying it with multiple myeloma patients way back. He is combing through, he says a 200 page document or something; I didn't quite get all he told me last time I saw him, but he did delineate between those who are metastatic and those who aren't, i.e. the info is different for the two groups. He was out this month, so I won't see him again until February, but I imagine he will have more info then.) Again, sorry my post is so long, but wanted to include all the info I could.

Threetree - thank you so much! No story is too long when it is filled with so much detail and information! I know sometimes we don't feel like typing more than a line or two as we feel so crappy. So I appreciate the long stories when I get them! And warning here comes another long one!

I have accepted that I do have MBC, although I have wanted to get a little more history on it and more detailed information from another source since my oncologist and other doctors I've dealt with at my current facility don't talk much. But what I really want is to confirm that the protocol I am on is right for me or if I could be or should be doing anything different. I have a feeling, like you said, that what I am doing is what they will prescribe anywhere else I go.

But I do want to go somewhere else regardless. Just staying at this current facility and switching oncologists is what my original plan was but since they screw up regularly there now, I am actually concerned about CT scans, bone scans and MRI's. I do not trust them anymore. They have grown so big because of the development and influx of new residents and so much cancer that the level of care is just not what it was. And my specific oncologist is so closed mouthed, so uncommunicative, so uncaring, I just don't want to deal with her anymore. I have a feeling she has something going on in her personal life, or she is just not a caring person. And I have no problems with leaving her at all. But I decided just to leave the facility altogether versus just getting a different oncologist at the same facility. I'll finish up the few appointments I have there - reluctantly! Besides the mess-ups I mentioned, there have been at least 3 or 4 others that have happened in the last few months I had passed those off as simple errors but now I'm "over it". Even the patient advocate assigned to me acknowledges that the place is "not what it used to be". And to have missed the Zometa is not a big concern - like you said I'm still not 100% convinced I want to take it anyway. But also, like you said, and I think I agree, maybe it is making our bones stronger and is the reason I can walk a few miles a few times a week….but to be sitting there in the chair thinking I'm getting it over with to find out that that nothing was injected - that's just too much for me. Turns out the new nurse didn't hang the bag correctly!

I found out not surprisingly that Sloan Kettering virtual second opinion is not covered by my insurance, so I am going to contact my new desired oncology center at a really highly rated general hospitall about the same distance as the current facility I go to (about 2 hours a way). They have a local hospital branch about 10 minutes away too, and I'm hoping that maybe, just maybe, I'll be able to go there instead somewhere down the road.

So all in all, I am "excited" to be moving on to another facility. That is really an odd thing to be excited about but after all of the mess ups I've had in the last few months it is a highlight in my life!

Hello! New here on this page. After 8 years on IBrance and letrozole, my scans are showing progression and my onocologists are recommending Verzenio and Faslodex for a 2nd line treatment. The doctor ordered 150 mg to start, which I am dreading. After all, my IBrance was reduced to 75 mg due to low blood counts. Maybe she has to do that to start due to protocol. I am also dreading shots in the butt after letrozole, but hopefully the new cocktail will hold the monster back a while. I have a general oncologist here at my rural hospital in New York, but go to see a MBC specialist (Dr. Lin) at Dana Farber in Boston about once a year. I have also noticed a big decline in healthcare quality. Our hospital cannot keep oncologists, and I am on my 5th in 8 years due to transfers and retirements. I really appreciate your tips here. One thing I was wondering about is how rigid the timetable for Faslodex shots has to be in case I want to schedule a vacation. Also, how do you deal with D which looks inevitable on Verzenio. Thank you!

Hi @polemonium Welcome to the thread and like @intolight said we welcome you but sorry that you have to be here. I started on Verzenio 150 also like intolight and many others, but I only made it for about 10 days I think and had to be dropped to 50. I have some other issues that may have contributed to my inability to deal with the lovely side effects of severe D, headaches, fatigue, nausea, etc. etc... I have seizures also and the 150 interred with my seizure meds. I was on 50 for about 5-6 months I think and felt almost normal. I was upped to 100 and have been taking that dosage for about 2-3 months. It is much more tolerable than the 150. I don't know why some oncologists start us on the 150. Just to see what we can tolerate? Or if our blood counts are ok then why not? I'm not sure. A number of us here wonder why some get started low and go up (which is much more civilized) and some get thrown right on the 150. I'm taking Letrozole also. I hope to be able to stay on that and the 100 for the foreseeable future but one never knows! The D is tolerable and almost predictable for me. I usually get it every 3-4 days for 1-2 days at a time. I do not take anything because usually after the 1-2 days of D, I then get constipated. It's a viscous circle. But it is tolerable. Like intolight said, we all share such valuable information with each other. I've learned so much and have taken advice and suggestions from this group which has been so helpful. Oh, and one more thing, I agree the decline in healthcare quality is disappointing at best. I'm in the middle of trying to leave the best cancer center in my state to go to an oncology center at a very highly rated general hospital. Not at all what I feel like spending energy on but we do what we have to do. Good luck to you and keep us updated!

@going2beatthis I'm glad you enjoyed your cruise despite norovirus! You sure didn't deserve that. Glad you are feeling better. Hopefully this will not become a new side effect for you. Sure is not fun. And hope your MRI shows very positive results.

Good for you on your mo switch. Sounds like you made the right decision for yourself. If I don't make the move to a new cancer facility, I will be at the very least changing mo at my current facility.

Best to you.

@marcials1 - Good luck with whatever way you decide to go regarding a change in your mo. Having confidence in one's doctor, in my opinion, is of outmost importance when dealing with MBC or any other longterm disease.

Where are the doctors who take the time to listen to their patients, answer questions if they have any and not make them feel like they are just a number that has to be rushed through a visit? Corporate ownership of doctor offices and hospitals, I feel, are not in the best interest of the patient who relies on their medical team to be there. This is my life that I am trusting to them and to find out that they just might be pulling from a list of options they have have availble to them when reporting on an MRI or PET scan, urks me to no end.

@threetree - thank you so much for your recommendation of the coconut water and bananas in helping with your electrolytes. I had been eating a banana every other day but will try increasing it to daily. As for the coconut water I will add that to my daily regiment right away. Know I will enjoy the coconut water much more that the Gatorade.

Going2BeatThis - You are very welcome for the coconut water suggestion. I hope it works well for you. I had a two or three years where every couple/few months, I was going to the ER because I would just feel all around terrible and as if something was seriously wrong. They would keep me for hours of course, run all those tests and scans, and the wind up concluding that my problem was dehydration and low electrolytes. Then they'd give me an IV, I'd be OK for a few months, and the whole thing would start all over again. One of the nurses in the ER finally told me to just eat more things with potassium (that was particularly low) like potatoes (there are lists on google). That's when I went back to the coconut water (has lots of potassium and I hadn't had it since chemo) and added the daily banana too. Later it started back up, but labs would show my potassium as fine, but I'd always have low sodium. The urgent care sent me to the ER a couple of times, because they said the number was getting dangerously low. I hadn't salted my food in years, and didn't eat all that much packaged stuff. They kept giving me IV's again, until finally my current onc said that adding salt could really help. I had been discouraged from that by my PCP and doctors at urgent care and the ER. They just can't seem to bring themselves to suggest to anyone that adding salt to their food might be beneficial, but apparently my onc felt differently. Well, I started salting my food and eating a lot of jarred olives, etc. and my sodium numbers are still low, but just below normal and not in the "dangerous" zone anymore. I've never had any potassium problems since adding the daily coconut water, and now the salt has helped too. I haven't had any dehydration/electrolyte problems for months now, so I'm sticking with it. A friend pointed out how interesting it was that I hadn't had to go to urgent care or the ER in a long time, and I told her it was due to finally figuring out how to fix the electrolyte problems. I continue to have water with meals of course, drink coffee and tea, etc.; just to get some plain old water into my system too. (The additional salt has not affected my blood pressure to date.)

Intolight - I know what you mean about did you "really say that"? Those visits are not my idea of "nice" either most of the time. Good and interesting to hear that your onc is convinced that 50 is as good as 100. I had not heard that as being definitive before. I'm sure Starbucks was well worth the higher blood pressure. Sometimes I go in just sort of a wreck and a "motor mouth", as talking away non stop is my response to anxiety. Then my blood pressure registers a bit high. I tell them I'll shut up and then they take it again a couple of minutes later, and the BP is much lower and just fine. I don't even need the coffee! I can relate to your anxiety though, as my scans and blood work seem to be showing some very slow creep upwards and we are monitoring and discussing possible plans for something down the road (liver?). It is a stressful thing for sure. Good luck with your similar issue!

@warriorboomer Thank you for posting this study. First, everyone responds differently to these treatments. It is important (like the study says) to drink lots of water and take a daily probiotic. Sometimes yogurt and/or Kefir helps also to prevent constipation. I get the D but occasionally I get constipated ever since I lowered my Verzenio dosage to 50 mg. If I miss a day I take a colace and increase my water intake. That usually works for me.

Second, I am the poster child (so to speak) for your study above. I was diagnosed de novo with Stage IV mbc and therefore have had no surgeries and was placed immediately on Ibrance. I did well on Ibrance as my first line of defense. I was on it for four years before progression. After trying two other drugs that both worked short-term only (Xeloda and Affinitor) I was placed on Verzenio. My oncologist said at the time that sometimes returning to a CDK inhibitor worked, and it has for me for two and one-half years now. My tumor markers are currently rising slowly and we are anxious to see if my scan on Feb 4th shows any progression.

I wish you all the best on this drug. I really don't want to switch and hopefully I can squeeze more time out of it.

@orknitter that makes sense. I've been playing detective with different foods & digestive aids (Rx & OTC) for a few days now. I'm hoping to find a happy "Goldilocks" medium here soon. Honestly, I've dealt with D-IBS all my life. I'll take D over painful impacted constipation any day!

Btw, your news do sound hopeful. I'll keep you in my thoughts and I wish you the best! 🤗

PS: Sorry if I've missed any direct responses to me. This platform is a little difficult for me to follow.