Abemaciclib Verzenio for Stage IV

We can be hopeful that there are new trials being done right now for what may be after Verzenio. I don't keep up on what is going on behind the scenes but I probably should. Btw, does DW get Zometa infusions? Reach out to us any time and we'll be as helpful as we can be. I hope you and your wife have a happy holiday season!

Do any of you get bad stomach pain with Verzenio? I've always had some, but it seems like it's increased over the last month or two. Earlier this week, I skipped a couple of my Verzenio daytime doses (I absolutely hate to do it, but sometimes feel I have no choice) and within a couple of days, I was feeling much, much better; especially stomach wise. I started taking both daily doses again, and now sure enough, all that stomach pain has come back, along with an overall increase in a "yuck" feeling, tiredness, and lousy mood, etc. I'd really hate to have to stop the drug or go down to 50mg twice a day, because to my knowledge that level has not been proven to be as effective as the 150 and 100 mg doses twice a day are. I'm at 100 now and have been for a little over a year, and it's been much better than the 150 was. I'm wondering if it's cumulative, because I'm starting to feel as bad on the 100 mg dose as I did on the 150. Just wondering about others' experiences in this regard. Thanks.

Oh Intolight - Thank you so much for your comments and sorry too that you are having an up and down time with all of this and feeling so tired. I actually have a little bit of a new theory since my earlier post this morning. I'd been relatively fine on the 100 mg dose, and then a couple of months ago, after doing some reading, I decided to add some honey and ground black seed to my daily regimen of "stuff", because they both have some helpful properties re a lot of things. I now look back and can see where some of what has seemed like an increase in Verzenio side effects coincides with adding the honey and ground black seed. Also, the effects have been gradually increasing over time, and seemed to have gotten a lot worse this past week. I did feel a lot better skipping those 2 Verzenio doses a couple of days ago, which would have given me about the equivalent of your 50 mg for two days there. As soon as I took the 100 twice a day again, it all started back up.

Well, I googled about honey and black seed and black seed can apparently make some drug side effects worse, as it affects a liver enzyme that breaks down Verzenio and other drugs. My understanding is that it would break down the Verzenio more slowly, so the side effects would build up and/or be stronger. I'm wondering if something like that isn't going on. I also read that honey can interact with a lot of drugs, so I'm wondering about that too, although from what I read it looks like it might even have the opposite effect on Verzenio, i.e. it would speed up the metaboliziation of Verzenio so much that it could lose a lot of it's effectiveness - kind of the opposite thing. It's all about pharmaceutical stuff that I don't really understand at all, but the basic gist of what I read says that anything (food, supplements, other drugs, etc.) that effects a certain liver enzyme (CYP3A4) can affect Verzenio. The one we are always told about is grapefruit, but apparently there are many more. Just my latest whim, so I'm not putting a lot of credence in it, but I do think something else is effecting the way the Verzenio behaves in my body.

I'm afraid to bring it up with the oncologist at this point, because it would likely spur him to think I'm a flake (re my honey and black seed theory), or cause him to want to do more scans and maybe change the drug. I'm going to drop the honey and black seed for the foreseeable future and skip the morning dose of Verzenio again today and then see how I feel in a couple of days.

I just feel so badly for you having to keep getting these MRI's after scans. It is so frustrating and takes up a lot of time, along with producing a lot of anxiety. I know what you mean about how feeling tired on any drug would be par for the course, but there are different levels of tiredness. I'm also glad that as you say, you are not panicking, because this has been an ongoing "watch and wait" thing for you. I would agree that it's probably not anything immediately alarming. I do hope you get an answer soon though, so you can stop all the craziness with the repeat scans.

Intolight, thanks. I too try to stay away from most supplements, but I do take a couple. I figured the honey and blackseed to be "food" rather than supplements, but I think sometimes there is a fine line there. I've heard about some oranges being bad also. I heard it was Seville oranges and anything that is a Mandarin. I think those Cuties might be some sort of Mandarin, but I've never been able to find anything that notes just which oranges are in the broader Mandarin group. Around here this time of year we have the Clementines of course, but we also have those wonderful Satsumas, and like the Cuties, they are delicious, but I can't find out if they are Mandarins or not. I just love them, but have been avoiding them (and most all oranges) these last few years over the possibility of some sort of interaction with cancer drugs. I really miss them, and understand that they have good things in them for cancer fighting too. I wish there was more information out there about these possible food interactions with the drugs.

I've been told before that some of my stomach pain issues could be heartburn, but I have found that most of the heartburn treatments like Tums, Pepcid, etc. don't really help this pain I get and can actually make me feel worse more often than not. I don't like to add any more drugs than necessary. The honey and black seed mixture is supposed to be good for heartburn and ulcer type issues, so I thought it might be an alternative to all the drug type antacids, but I don't know. Apparently there is something in black seed that is supposed to fight cancer too. I don't expect any sort of miracle cures from any of this stuff, but I do think of it often as "just one more thing" that can help fight the cancer like green tea, mushrooms, (and oranges?) etc. Maybe the honey and black seed does more harm when you take the drugs too. I just don't know, but will play around with this a bit and see. I did take a couple of tums a few minutes ago, in case this is a heartburn thing, but so far I haven't noticed any improvement - typical. I still wonder too sometimes about the fulvestrant, as the low estrogen can cause similar symptoms with stomach, headache, and fatigue problems. I also really noticed this increase in side effects following the last round of shots, so there's that possibility too. It's just so hard to know what's what with this stuff and it makes it all the more difficult to deal with.

Hi Shanagirl - Interesting, that just as with our cancer drugs (and side effects), we also do some similar things with the supplements, etc. I take a D3, but I'm taking a break from my ground black seed and honey, because I think it might have been ramping up the Verzenio side effects. I've also been taking SAM-E for over 20 years, for mood and joint problems. I also use a happy light for mood issues too. I'd rather do that sort of thing than take commercial anti-depressants. Frequent walks help too. I drink a few cups of green and ginger tea every day and once in awhile do a "ginger-turmeric" tea. I've actually been thinking of adding the turmeric more often. Oh yes, all those oranges this time of year are so yummy. I just wish they'd figure it out if they are OK to go with these cancer drugs or not, because I hardly ever eat them anymore, due to that issue, and now that the stores are loading up on oranges, I just want to dive in. I used to put the leftover peel in my green and ginger teas, but quit doing that too, because of the not knowing. I think I read that one of the best cancer fighting components in oranges is in the peel, but unfortunately it seems that that same component (enzyme, flavonoid, polyphenol or whatever) is what interacts with the cancer drugs, so just don't know … I'm afraid to do anything like Priolsec, because I understand it's not good for bones. I do do Tums now and then, and an occasional Tylenol, if I'm feeling really bad. My calcium has been low sometimes (due to Zometa I think), so I try to be careful about that and eat food that has a lot of calcium. I do some calcium supplements, but have yet to find one that doesn't give me some kind of stomach trouble, etc. Something in all of this though, has seems to increase my Verzenio side effects over the last couple of months, and I just wish I could figure out what it is, unless of course this is actually a Faslodex problem - who knows?! Hope you had a good night and rest😊.

@threetree I do get bad stomach pain on Verzenio. At least that is what I have been assuming is causing it. I don't know if there is anything in particular that triggers it though. I am dealing with a bout of it right now which reminded me I wanted to get back to you! The lousy mood comes and goes for me also. I have skipped a few doses here and there but not very often. Usually it's when I have a really bad headache and cannot stand the thought of putting any drugs into my body. This current wrenching stomach pain came out of nowhere today. Not eating anything different. So not sure. I'm hoping not to go back down to the 50 either because I want to get some results out of this 100 dose. I guess I'll just deal with all that comes with this and hope it passes sooner than later. Always something.

@intolight @threetree I had not heard of other citrus having the same effect as grapefruit. But I do eat a few oranges a week so…..now that has me thinking.

@marcials1 I am feeling a little better these days. I think the tumeric. With ginger and green tea is a great thing to take. It’s like a tonic for me. I’ve noticed I’m not so painful in. My bones and joints since taking it.. it’s supposed to have anti-inflammatory benefits in your body’s cells. And. Your joints., and good for metabolism.. I’m still very tired anyway. I get in a. Low mood the week or 2 following my Fasoldex and Xgeva injections.. I usual start feeling a little more energetic in the third week after the shots.

@threetree I didn’t know oranges, like grapefruit interferes with medications. never read that.🧐🩵

I have a quick question for y'all. My dose of Verzenio was just changed from 50 (where I started 8 weeks ago) to 100. I'm curious how long it took people to "feel" the effects. I'm dreading the big D will start Christmas day. I've had virtually no problems on the 50 and hope that will continue with this higher dose.

And happy holidays to everyone.

orknitteer - I went from 150 to 100. Never really had any big D problems, but the side effects I did have got better within a few days of the drop - as with Intolight. From what I've read, those who get the big D don't always get it immediately and it looks like sometimes it can take several days to weeks before it starts. Comb through this thread some more, because I think others on here have talked about it. Good luck, for sure!

@orknitter I went from 150 to 100 after my 1st year on Verzenio. No diarrhea to speak of on either. I drink lots of water and take Bio K+ to keep my gut floral healthy. Good luck.

FYI - Got approved by Lilly Cares to provide V next year within a day or two of my mo submitting the application. The Foundation told me that Part D medicare does not disqualify one even if your drug provider coverage would have supplied it with an out of pocket copay.

Wishing everyone happy holidays.

@going2beatthis Your information agrees with mine. I have no problem getting Verzenio from their foundation being on Medicare. I had to send a copy of last year's income tax, but they only count income and not total assets which helps so that owning a house doesn't count against you.

Ugggg I lost a whole paragraph 😡just don’t feel like typing anymore. @orknitter I just responded about my experience. with Verzion from 150 mg to 100. bad Diarreah at first but now Ok.😉

@andy280 check the Monarch 3 trial. There are 2 statements indicating their analysis showed no notable decrease in efficacy for 100mg or 50mg. I found the statements by searching "100". They were in the paragraphs Relationship between early diarrhea and PFS and Discussion.

@intolight - I think you were looking for this, too.

https://pmc.ncbi.nlm.nih.gov/articles/PMC6336880/#Sec2