Abemaciclib Verzenio for Stage IV

@intolight I think it was @zarovka who posted the original study. I was just posting my response, as she seemed to be asking for individual experiences with Verzenio. Best wishes! 😊

Intolight - The note copying doesn't jive with me either; I get it.

Question for those on Verzenio: Do you find that the side effects can vary quite a bit from week to week, month to month? If so, do you think there is anything in particular that causes the variations? The weather? The season? Diet? Other drugs/supplements? This past month, I've just seemed more fatigued, brain foggy, and bummed than usual. I usually always have a lethargic bad January, and it could well just be my usual January slump, but this seems more pronounced than usual. Haven't been doing the PT, putting off and cancelling appointments/get togethers for most anything, just doing a lot of "nothing", no motivation or energy to do things, see people, etc. Also, more achy, lightheaded, etc. than usual. All of these things are side effects that I've experienced from Verzenio and Faslodex from time to time and have gotten pretty used to, but again, they just seem to be more ramped up this month. I had started on 150 mg X2, but then was reduced to 100 mg X2 after a few months. I've been relatively fine with the lower dose now for well over a year, but I'm starting to feel a bit more like I did on the 150, but haven't changed any dosing. Has anybody else had any similar sort of experience or have any thoughts about this? I'd really appreciate any input that anyone might have. Thanks so much.

Intolight - Thanks so much for your comments, as always. You might have a good point there about the "over-analyzing". I've been told more than once that I have a problem with "over thinking things" (thanks Dad). I sure know what you mean about just letting things go now that you used to tend to. Also, I live alone and I've often thought that I would/could do more if I had a child or a pet to take care of. I've also thought that like you, if I had a husband around, he and I could share some of this stuff and more would get done. I do think having family and pets around really helps with this disease and I really wish I had that. This morning, just as I woke up though, I had one of those "aha moments while I was lying there, and I'm now wondering if my extra fatigue, etc. this month, isn't due to having my last Zometa and shots (first time on the same day) on the 8th of this month. I realize it's bee 3 weeks today. This last Zometa really got to me more than most, and I've had read that the side effects can go on a good two weeks or more sometimes. Maybe I'm just "over thinking" again, but now I'm pretty sure this might just be lingering side effects from getting that Zomet and Faslodex together. I had been dealing with a stomach bug just days before and started getting a sore throat about the time of my appointment. The NP didn't seem concerned though and everyone just chalked it up to food poisoning and/or a stomach bug, so thought it was OK to proceed. I'm now pretty convinced that all of that together has made for an "extra side-effecty" and fatigue inducing month. Sometimes you really do just wonder how much of all of this a person can take and for how long. I'm just a year older than you, and can really relate to your experience. I too can go out and things are ok, but I usually stay in and just read or watch tv/internet. I have a hard time getting to the household chores, but do fix myself things to eat and get to the dishes and laundry, but not as "robustly" as before. Most stuff I just don't do any more. I do have an organizer that has been coming to help me get through my old boxes and downsize though, and that has been a help. She's coming tomorrow though, and I doubt that I will be doing as much works as I usually do with her this time around. Maybe next month will be better? Thanks Intolight for "being there" and listening to my whine. Hope you are having a good day and maybe your area is also warming up a bit now too?

Hi ladies, I may be all over the place here because I haven't been keeping up with messages.

@intolight - Glad you had a nice visit with your MO! Hoping your appointment on 2/4 shows no progression. I still pay attention to my markers too and so far they are up & down with how they correlate to the scans. I hope you get to stay on the 50 and glad to hear it seems you are doing well on the 50. Another one of those cases of an oncologist saying 50 is as good as 100. Mine says I should stay on 100 vs 50 and if she was me she would not go down to 50. I don't get it how oncologists are all different. I know we all have different responses to meds but in general it does not make sense to me. I know we have beaten this topic to death between myself, you and @threetree but I still want an answer. I have a new patient consult in a few weeks and hoping to get an answer there. I'll share with you all.

@warriorboomer - I didn't have the bid D for my first 5-6 weeks on Verzenio 100mg. Then boom! And until very recently it was intermittent and not so bad. Now it's full on unless I take an Imodium Then I'm "normal" for a few days. But my markers are better on it than on 50mg and supposedly my progression has slowed and maybe even improved. I say "maybe" because my oncologist is about as descriptive as a piece of blank white paper! I hate the nausea and the cramps and constipation (not getting anymore). Sounds like you are dealing with that. Sorry that sure is not fun at all. I was constipated after my one week radiation treatment because the radiation was new bowels. Was that the case with you? Do you get headaches? I think that is my biggest complaint. Oh - and I saw the study that IntoLight mentioned in one of your threads also! Maybe you posted it by mistake bringing up one of the earlier posts? In any case no harm done because what I could make of it was interesting. I think it was from back in 2018? Oh and now I see the you all figured that out! So ignore me!

@orknitter - I used to waiver between D and constipation too. Now it's just D. But I'm not freaked out about it. I think maybe my food has been too spicy or something so I need to go bland. And even if not the food, I don't worry because I know I'll just be on to some other new stage soon anyway. I try to just go with the flow. Glad you are staying at 100 and hope that works for you. Yet another one of those oncologist experiments of going up or down with dosage. Good luck with your lymph node surgery. Will be thinking of you.

@threetree - Definitely YES on the verzenio side effects varying from week to week! Or day to day or month to month. I don't think it is diet for the most part. I've had a few spicy meals lately but I don't think it was enough or often enough to do anything that would last for weeks. For me I think it may be the weather and my particular skull mets. I'm in FL and it got really cold & dry for a few weeks and my sinus are super sensitive from mets. I have an MRI in a few weeks to see what's going on with that. My main complains are headaches/brain fog/dizzy/lightheadedness/groggy/nausea. I have D more than I had before also but that is not enough to worry about. I still have an appetite. I'm still on 100, have been for a few months and hope to stay on it. Apparently 50 was not getting me any results. And you may be right about your Zometa. I forgot you have those more intense issues from it. And with it and the Falsodex together. That could be it. Do you have some days or weeks where you almost feel "normal". I do and when I do have those I am so thankful. They are not frequent enough. And I am like you and @Intolight regarding cleaning, etc. Some days, very few, I get motivated and get cleaned up and organized. My husband is a wrecking ball and when he comes home ( usually works away a few days or week at a time) I just give up! He cooks and deals with my stuff so I cannot complain. Well I can but really he is a lifesaver more than a wrecking ball. I am thinking of you and hoping you can have a good day soon. We all deserve it.

One last thing, in one of my most recent rants and venting sessions did I tell you all that a nurse forgot to hook up my Zometa so after a 30 minutes of fluid IV she came in and basically said "uh oh"….I said "NOPE" unhook me I am out of here! That is one of the many reasons I am "interviewing' for a new cancer treatment center. Life goes on. Hugs to you all and be well.

@warriorboomer Concerning the cruise: I have taken many and I love them but I have no food restrictions. I am unsure how you would do, but I think you would have to be ultra careful. There is always a buffet where you can pick and choose so that might work for you. The dinner menus usually vary each evening although they are usually posted somewhere so you can check them. You can control the walking which is what I do. If I am not feeling well, I just sit somewhere. You can get room service any time which might help too. If you don't mind staying on the ship and not doing any of the port excursion tours, you are good as there are lots of places on board you can sit and read, play cards, etc. But that would be a bit boring depending on where you are going. You can usually get a taxi once you leave the ship, and if you let the concierge know ahead of time, they can help you. Some of the tours are bus tours that leave right at the port too. If you are going somewhere I have been I may be able to help you further… You can also use a wheelchair. You can reserve one ahead of time if you think you need that. I would call the cruise representative now and discuss your limitations. They are usually good at helping. Let me know if I can help you more.

@warriorboomer Ugh, I just lost a long response…grrr… I have never sailed with Carnival nor have I visited any of those ports so I can't help you there. You might want to reserve a wheelchair since some of the doorways are smaller than normal (ask) unless you need it to travel i.e. airports, hotels, etc. I know they don't want you to take any electrical device, however, I do know they have normal electric plugs now. I have a portable oxygen machine but I didn't need it at sea level. You might be able to ask and get permission. There is usually a small refrigerator in the room (filled with hotel-type drinks) that you can use. I would keep bugging them until I get someone to talk to. Gotta run… pm me with more questions if you want.

@warriorboomer - We like to cruise 2-3 times a year. I haven't sailed with Carnival for a long time, but I would expect then to work with you on your food restrictions to the extent that they can (I'm not really sure what your restrictions are). They usually go out of their way to make you happy. Additionally, you can pick and choose of the menu in any amount (3 appetizer s, no entree [or 4], 2 desserts...you get the idea)

I don't have the mobility issues you have, but...You might look into renting a mobility scooter, if they offer it. If not, I'd bring the wheelchair, just in case. You can also ask if they have special accommodations for getting ashore. When you look at the excursions, they should tell you the activity level in the description... you do have to get to shore for any excursions. Most of the ports have a little "cruise village" (we call it), with shopping, dining, and bars at the base of the pier. It's a little bit of a walk to get there...except Costa Maya which has a ridiculously long pier. It shouldn't be too blazing hot in February, so that's a good thing.

If you're trying to find the "sweet spot" with Imodium, consider half or quarter doses. Liquid Imodium can help with the smaller doses. Simethicone (e.g. Gas-X) can help with the cramping. Can/Do you take Vitamin D-3? I found out, by accident, that it really helped with the IBS-D (pre-Verzenio). When I'm travelling, I can usually take ½ an Imodium every other day to strike the right balance. I always have some in my pocket/purse to use preemptively if think I feel it coming on. I avoid excursions/situations were there is no bathroom available for an extended time.

I can eat most foods, as long as I don't eat too much of it (1 piece of bacon, not 2; side salad ok, salad as a meal not okay; dairy with lactaid ok; eating too much of anything at one time not okay). Frankly, some days are not okay for no specific reason, but at this point, most days aren't terrible.

Background- I was dx'd de novo with liver mets. I started on Verzenio 150 in July 2020, and later reduced to 100 (current dose) to help alleviate the D..

I hope this helps.

@seeq Awesome tips & suggestions, thank you so much!!! 🙏🏼 I will keep them in mind. Yes, I spent quite a few hours earlier this evening on the phone and figuring things out with a truly amazing Carnival CSR. I'm gonna be calling Guest Services tomorrow per her advice, to finish setting up all those special accommodations.

I've created very long posts before about my food limitations (both allergies and intolerances.) Sorry about their lengthiness. In one of my last ones I mentioned that (knocking on wood 🤞🏼) I may have found my "Goldilocks" ever since I started making & drinking my papaya smoothie again daily. I was excited and hopeful to hear from the CSR that Guest Services can provide me with all the ingredients I will need to continue that habit during our trip. My smoothie has really been a lifesaver!

I'm so used to having D-IBS since my childhood, that I really don't mind the D. I've never had to take Imodium or anything else like it. I've always been more bothered by cramps & embarrassing gassiness. If anything, I hesitate to add one more thing to my repertoire, but I'm seriously considering asking my MO about adding Gas-X. I've taken it in the past, and it helped, but haven't used it since my DX. Thank you! 🙏🏼

Week 4 - Day 1 Verzenio 150 mg twice a day…

Helloooo diarrheaaaa!!!!

I don't mind the D so much as the abdominal pain that's accompanying it. I spoke with MO's RN and we agreed I'm gonna try Kaopectate, because -even though by their protocol they prefer faster acting Imodium- the Imodium won't be as helpful to reduce the gas, cramping and pain. I just sent my husband off on errands for that and something I can possibly eat and drink (bananas, applesauce, clear broth, clear Pedialyte or similar.) Even water is going right through me. From 10 am to 3 pm I've already gone 4 times, around every hour or less in the last 3 hours.

@going2beatthis I have my own small foldable wheelchair, I can't afford to spend any more money on this already ridiculously expensive mistake of a trip, and Carnival jerks -at their so-called Guest Access Services- told me there's a port where we have to board a smaller boat to transport to shore, and once off the boat they "will not" provide any transportation or accomodations. Honestly, as you'll read below, transportation is the least of my worries, because they're not even faking to "try" to help me with my strict dietary needs. I guess I'm either gonna get turned away at boarding because "no, you cannot bring that on board" or starve to death while on their stupid boat.

I'm sorry if I've missed responding to anyone else. I've had a couple of difficult days, dealing with a cruise company that refuses to acknowledge/abide by ADA Rules (placing impossible restrictions and requirements on disabled individuals, make me feel like suing them!) as well as my symptoms getting worse (pain coming back, "palliative" radiation didn't help,) and just realizing that - after 3 months on Faslodex and almost a month on Verzenio - my CA 27.29 actually went up (almost doubled!) since December. This sucks!

I have another set of Faslodex injections scheduled for tomorrow, and f/u with MO. DH and I are both angry, frustrated, and full of questions and complaints.

I apologize for all the venting. Thank you for your support! 🙏🏼

@moderators Thank you so much for your warm words of support! 🤗

Hello everyone! I have a question for anyone here who is both on Verzenio *and* Faslodex.

As a background, the first time I got my Faslodex injections last year they were given to me at the same time as my first (and only so far) Zometa infusion. I had a horrible weekend! My side effects were worse than getting hit by COVID-19 at the beginning of the pandemic. However, following injections of Faslodex didn't cause those SEs (at most, sore butt cheeks I had to ice for a couple of days,) so I blamed the first weekend on Zometa.

Enter Verzenio, at the beginning of January. Faslodex injections on Friday. I just spent my weekend going from Urgent Care to Hospital ER with worse SEs than my weekend after the Faslodex + Zometa combo.

Thus the question is, have any of you ladies (and or gentlemen, if any on this thread) noticed a difference in the way your body responds to Faslodex injections:

1. given alone

2. as a Verzenio+Faslodex combo.

TIA for any feedback!

Hugs. 🤗 🙏🏼

Intolight - So sorry to hear this news. Sending several hugs your way and lots of good thoughts that this will all work itself out and you will get a new and helpful treatment plan.

@warriorboomer I hope you got some feedback on your Verzenio AND Faslodex question. I have not input on that one. On Verzenio, Letrozole and Zometa. Hope you are doing ok! Not sure when your cruise is but hoping it is or was better than expected!

Hi all, is anyone having any new issues with insurance denying coverage for routine MRI's, scans, etc.? I am just beginning to run into some issues with my coverage. Looks like they plan to deny an MRI that I have scheduled and not sure what I'm going to do about it. As if this isn't enough fun, just load on some more.

@marcials1 Hi! No, no specific answer on Verzenio + Faslodex combo yet. It's ok.

Regarding the cruise, sadly those plans had to be scrapped. Only sorry about the waste of money (thanks to a totally inept & rude travel agent who didn't properly add the Travel Insurance, so... No refund.) I will NOT be giving them or Carnival good reviews. Carnival falsely advertises that they cater to disabled individuals... They don't! They placed all sort of restrictions and unreasonable demands on my husband and me, and refused to make simple & reasonable accommodations (totally against ADA rules.)

After the weekend I had (urgent care and ER visits, flare-ups of excruciating pain) and my test results coming back Monday (totally immunocompromised and too many inconsiderate people sneezing and coughing in your face) my DH and I decided putting me at risk in a situation that would be neither comfortable nor enjoyable was just.not.worth.it.

Sorry about the run-on sentence (s)! Lol

Btw, I'm keeping both you and @intolight in my thoughts this weekend.

Hugs!

@warriorboomer What a bummer about your cruise! It sounded like a lot of hassle to try to get what you needed. I have not heard one good thing about Carnival in general. I'm sorry that happened to you. How rude and uncaring people can be never fails to amaze me. I feel like I would be filing some kind of formal complaint but that is extra energy spent we don't usually have. But it may be therapeutic to get that out of your system! I hope you are feeling better this week. Stay away from inconsiderate sneezing and coughing people! I'm trying to! Thinking about you and hoping you have a better week.