Abemaciclib Verzenio for Stage IV

@intolight I'm glad we got our page back! I was wondering what was going on - like "Now what"!? I've been super nauseas for about a week. Not the usual D and headaches but plenty of nausea. The excitement never ends. I would probably skip out on the DGD concert also. It's just too risky right now with all of the colds, flu, etc. that is floating around. And with people just coughing gagging and sneezing without regard to others it is just gross. That is a tough decision though. I hope you get your biopsy appointment real soon. Thinking about you.

Intolight - In your pocket for this, absolutely! I hope things go really, really well for you.

Hi all, just dropping in to say hello and check on how everyone is doing. @orknitter awesome news on your ultrasound! Happy for you!

@intolight Please tell me you have good news from your biopsy. @threetree How are you these days?

I'm hanging in; some OK news, some not great and some good. All in all not going to complain. Had a patient consult yesterday with a new facility and oncologist. It's a NO. Oh well. I tried.

Looking forward to hearing from anyone who feels up to an update. I think about you all and always send out the most positive thoughts and healing vibes.

Hi Marcials1 - Nice to hear from you, and thanks for asking after some of us. Well, I'm glad to see that you are "hanging in" as you say, because that is generally a good thing. I always think that "just chugging along" or even "just hanging in there" is better than alternatives. I know what you mean about some good things and some bad going on, but overall no complaints. Maybe another onc will be the one for you.

I'm just chugging along. I've been extra tired after the fulvestrant shots I got last week, and don't seem to be recovering from it all as fast as I usually do. Not sure why. I'm a bit worried, but trying not to be. I also had a low sodium issue that might have played into this, and sometimes I think the weather adds to it also, but otherwise I don't know just why I'm doing this extra "dragging" and have so many more body aches and pains. Getting scans in March, and hopefully those won't show anything new. I'm still waiting for my onc to send me some info re Zometa benefits, but so far he hasn't. I know he has been extra busy the last couple of months and was also out of town for awhile. I haven't actually seen him since before Christmas, but will again in March. I've only seen the NP in between. I will let you know about the Zometa thing too, if and when I get any info. Take care and thanks again for checking in with us all.

@threetree and @orknitter I have been on Zometa for almost nine years getting it every three months. I am careful with my teeth, but I have had no problems, no broken bones, etc. I was put on it when it was the standard of care and before any doubts floating around so I didn't question it. I am not sorry I did because I have been doing so well. My SEs are very minor and I have a good oncology center that I trust. I also have used my port for the past three years. I just wanted to throw in my two cents. It is your body and you need to do what is best for you.

@intolight Hoping for the best for your biopsy news. Glad you have a great team you can rely on. That is so important for all of us. Spring will be here before you know it! I am in north FL and we are having a cold winter but no snow! I miss snow and haven't been in it for about 35 years. I bet one time would be enough for me! And I'm with threetree - it is encouraging to hear you've been taking Zometa for going on 9 years.

@threetree - I am still in the same boat with my opinion on Zometa but have decided to keep going with it. At least for now. So far SE's have not been bad. I missed my last dose because the cancer center screwed up and I do think I feel a little weaker in my legs but not so much that I am in pain; maybe just a little weaker. My dog has hip issues so I haven't been able to walk her in about 3 weeks to test out my legs. She is my best buddy and it breaks my heart to see her in so much pain. My husband I are taking her to a vet on Monday. That is not going to be easy. First of all she is not easy to deal with. Shows her teeth and snaps when we try to help her in the car. And she hates any vet. Joy joy joy!

@orknitter I don't remember specifics from my lymph node surgery. I had a mastectomy at the same time as the lymph node surgery and it all went easy and not much pain at all. That was 12 years ago so I was younger and not intimidated by much! I think you are going to be fine and I'm sure your team will make sure you get all of the details worked out. You said you are getting implants? No expanders first? Has that process gone away? That was the hardest part for me. I did wear a workout bra through all of the stages. In fact I still do 12 years later!

I am feeling nauseas almost daily lately. Besides the D and headaches, this is a new one for me. It is always changing. Each time I get a grip on one SE along comes another one. Oh and the oncologist I had had a consult with mentioned 2 things to me I had not heard of and wondering if any of you have done these: 1) Natera Signature Residual disease test and 2) Caris molecular profiling. I am considering both.

It was really nice to hear back from you ladies. Always wishing the best for you all.

Hi everyone Im stopping in to say hi to you and see how everyone is doing. I know some of you from another forum @threetree and @intolight and probably others but I haven’t stopped by for quite awhile. I hope everyone is hanging in and have no serious issues. I wanted to check in today before starting my day with DH.🥰

Good Morning lovely ones, Ugh what a horrible night I had when I went bed. Coughed non stop all night, felt like I was drowning in my own lung fluid., kept peeing all night too. I ended up taking a sudafed, robutussin, and one of the hydrocodone opioids my Neurologist gave me for the cervical neck procedure he did, Friday. @threetree You know I’ve been through his. 3 times since October., I ge so sick and achy its chills, some times vomiting,. But Ladies, I’m asking you if you think it might be a cumulative Side Effect from the combined daily Verzenio, Fasoldex and Exgeva injections. Today. I feel like I was hit by a truck., It’d been 2 weeks ago today.. has anyone here experienced this guys?

Hi @orknitter - My nausea and D have been out of control on 100 Verzenio also. I was cruising along with only slight SE but them BAM! They caught up to me. You are right this is the only place we get to talk about D and constipation so openly!

Hi @shanagirl Good to hear from you. I'm sorry you are having such a hard time - It's with Zometa right? I think that the combination you mentioned might have something to do with the extra intense side effects. I think I saw that @threetree answered you on this. I hope you are feeling better. I have been lucky with my 3 infusions. I have very mild side effects. I usually react to any meds so I'm shocked that I have had it so easy. But I always have just the Zometa with no other treatments that day. I take a Tylenol an hour prior to the infusion, I have the drip for 30 minutes instead of 15 minutes and I have 60 minutes of fluids with the infusion. I really hope you are up and around today and feeling as normal as we can feel.

Hi @phoenix14 Welcome to the club we all wish we didn't belong to! I'm sorry to hear about your Zometa experience too. I have heard others with the same or very similar side effects. I see you heard from @threetree and response regarding major side effects as well. I have heard as I am seeing from others that the first shot seems to be the worst. I am going for my 4th in a few weeks and hoping to remain as lucky as I have been so far. We never know though as side effects of all of these meds change over time. I hope you are feeling much better by now.

Sorry if I am overlapping or on the wrong thread or out of order on this post!

Intolight - So glad you got some relatively good news. At least you know what's going on now. Real glad to hear that you didn't have to switch to IV chemo! I had my fulvestrant shots this morning, so I can really relate to how glad you feel to not have to get those anymore. I wish you lots and lots of luck, and a long, long time with the Orserdu. Please don't forget us here on the Verzenio thread and let us know how you do. I hope you are feeling some kind of relief now; now that you have good information and a new path forward. Hug.

IntoLight, Elascestrant can work wonders- in principle, it should make Verzenio work again also, though most insurance plans would probably not pay for both drugs? Perhaps that will change in future, so that if it stops working perhaps you can just add back Verzenio and get more time…

yikes, I started with the big D a few days even on the lower dose of Verzenio. I never know whether the Fasoldex is the culprit though. Good morning all😊

@marcials1 Hey there girl! Yes. The Verzenio is famous for the big D. But I’ve also noticed thatit’s also one of the side effects for the other 2 treatments I get.. Fasoldex & Xgeva injections once a month. They seem to be Cumulative as the week or 2 goes by after the injections. Who knows. I just keep on keeping on. I would never switch because this treatment has been keeping me stable since 2021.. I have scans coming up t the end of the month so each scan appointment has its own anxieties. Hoping nothing new shows up.😬🫣🩵

Hello, I'm new here. I got my first diagnosis in January, invasive lobular breast cancer, stage IV, and wanted to ask if anyone else with HER2 is on low verzenios and if it helps as much as HER2 negative? Thanks in advance

Hello Aisha11 - I was originally diagnosed HER neg in 2018. I became metastatic in January of 2023 and at that time they said I was now HER "low" (+1?). I've been on Verzenio and Fulvestrant since about April/May 2023 (they took a long time getting me on drugs!). I have been stable on that combination ever since, so it has been my first and only line of treatment. I was started on the 150 dose of Verzenio initially, but was extremely fatigued and couldn't even get through the grocery store one day (had to ask a friend who drove me to please come and load my cart up onto the check-out counter, as I just had no strength and thought I might faint. That prompted a reduction to 100 in the fall of 2023. I've been fairly OK with that dose since then. Less fatigue, but still get tired, but it's "doable". I hope this helps to answer your question - and best of luck to you! Like Marcials1 said, there are lots of people here who can hopefully help a lot