Abemaciclib Verzenio for Stage IV

@intolight Thanks for that info. Hope you are doing well.

@threetree Yuck that must have been awful having food poisoning along with all of the side effects we have on all of the drugs we are on. I had it years ago and it was not fun. I don't know what I'd do now. I did take 2 Imodium when I was on 150 Verzenio and I'll NEVER do that again! Like you, it took me days or more to feel almost normal after that. I'll take 1 if I have to when I go on 100 but that is all. We are all different because @dulcea has or had been taking 2 at once.

I have been feeling really crappy for about a week. It started with feeling lightheaded and nauseas and now I have headaches on and off and just generally feel awful. I just want to put my head down. I'm thinking it is from the low red blood cells (low iron/anemia/whatever). That makes me want to get my Zometa infusion even less than I already do. I love that you told your oncologist you were sticking with Verzenio and fulvestrant instead of going to chemo. We do have to listen to our bodies and be our own advocates. Even though they are the professionals with the knowledge we have to trust our gut. instinct. I think the Zometa is going to put me down for the count with my already low counts (2.71 red blood cell) and then upping to the 100 Verzenio a few days later. I may suggest to them that we hold off on one of the two. My "team" does not like me because I question them all the time and have corrected them numerous times.

My scans were "ok" a few weeks ago. Basically stayed the same with slight increase in just one lesion. So even on the 50 Verzeio I am holding my own. One more question - is fulvestrant the same thing as letrozole? Estrogen blocker?

Covid is going around. I just got over it. Luckily I caught it early and got some Paxlovid. Had to change my oncologist appointment to a video visit

@intolight Sorry you're feeling the cruds also. I always assume it is the meds too. I still have the crappy feeling but it comes and goes, not steady like it was last week. I feel better if I take a couple of ibuprofen. Usually 2 at night and sometimes 2 in the morning with coffee. I hate to take it but if it makes me feel better at this point why not!? I thought something maybe going around also, or maybe due to the weather here (FL). It has been super extremely hot and humid and it feels heavy and moldy outside. So who knows!?

@AJ How are you feeling? I saw your email this morning about having Covid and also got a text from a friend who just tested and found she has it also. She lives in the same town as my family who came up to see me just over a week ago. I need to find my tests I guess and see if that is the problem. I don't think so because I don't have the symptoms that my friend has and my family is all fine. But I'll test and rule it out if nothing else.

@dulcea You have a point there about cancer is not the only thing running our life! We can get viruses or other illnesses - it's not always the cancer! But for me, this is the first time in my life that when I do get any other sickness, a cold, fever, etc., I actually do get a little freaked out BECAUSE of the cancer looming in the background. With the low immunity it brings on a new perspective. I am hoping that when you respond that the D is backing off! You've had more than your share of that sh*! literally! And what are side effects of taking Imodium continuously? You said your oncologist said not to worry about it right?

In general, other than this current bout of feeling crappy, I don't have much joint pain, aches, or other issues. I have been holding my own on the letrozole, 50 Verzenio and my seizure meds. So not looking forward to the 2 intrusions coming next week. I may go from feeling almost "normal" to a whining, miserable pile of D and flu-like symptoms along with minor seizures. And that is to beat the cancer. Makes me wonder.

Will keep you posted on the Covid test and hope you are all feeling better today!

No Covid for me. Thankfully. Just general crappy feeling. Meds likely.

@lacombattante I'm sorry you're dealing with these ups and downs that come with this cancer. But please do not feel hopeless. I think it takes time to find the right balance with these drugs. At least in my short experience. And I'm sure you know that attitude is at least half the battle.

I cannot say I have had any liver issues with Verzenio. My mets are in my bones. So far. I've been on it along with letrozole since April/May. But I also do not have liver mets. I don't know if that has anything to do with the toxicity. That is definitely something to talk to your oncology team about I would think.

I did start on 150 and the tumor marks dropped significantly and then I went down to 50 because my side effects were so bad. And after 3 months of the 150 and drop to 50 I had no change in my tumor sizes. I had 2 weeks off between the 150 and the 50. I'm taking the no significant change in tumor growth as acceptable. Like your MO said, I have been told the same thing about efficacy.

I am scheduled to up to 100 in a few weeks. If I have a bad reaction and side effects, then back to 50 I go. When is your next visit with MO? Oncologist?

@lacombattante Sorry you are here too.

Yes, you seem to be stuck between a rock and a hard place. It's working but it may be causing some harm too. I don't have liver tox issues with verzenio but they hover around the low normal so they have been affected compared to my precancer "normal". I used to take Ibrance but it really affected my liver and white cells so I changed to Verzenio. My second opinion doctor also prefers Verzenio for liver mets so that does seem to be the consensus. Finger crossed that the 50 is better for you.

Have you had a blood biopsy that might show a pik3CA or other mutation? There are other medications out there that might be beneficial too. One day at a time. Try not to worry about it yet. I know it's easier said than done, but I've learned to to be patient because everyone is different and you don't know what will be best yet until the time comes. Am I making sense? In the meantime, you are smart to be working and still lucky to be able to do sports. Sending you strength.

Lots to report peeps.

I just wanted to tell you about the "experiment" with reducing my 100 mg to 50 mg for vacation. It was wonderful. No diarrhea within 24 hours of reducing my meds. Great appetite-I gained 3 pounds in a week. My eyes stopped dripping tears all day and I didn't feel dehydrated and thirsty all the time. No peeing in the middle of the night either or having dried up green boogies every morning that make it hard to breathe. I have come to the conclusion that it is acting like a diuretic! So keep drinking everyone! Started back on the 100 mg and all these S/Es returned promptly.

Also, my PET scan this week was not good. Progression in bones, liver, lungs after a lovely almost NED report in March. Damn. Not as terrible as my original scan, but clearly Verzenio is no longer working. I thought it was interesting that the radiologist just mentioned SUV uptake instead of size except in my lung, where we are not even sure that one is cancer. Long story there. I do have 8 lesions in my liver - which to me is better than "numerous small" ones that I started with. There were too many to count. But, my liver feels funny. Not painful but it feels swollen and uncomfortable.

Needless to say, I will be on to the next treatment, which unless my cancer has mutated, looks to be Piqray since I have the Pik3 mutation. I wonder if they will do another blood biopsy or even a liver one. Maybe I'll ask for that. Anything else I should do now? Piqray S/Es seem to be nausea , diarrhea (been there, done that) and diabetes. Great. Piqray is not an active board that I can see so that has me worried.

I am mad that I allowed myself to think about the future. I have been and am still slowing making plans for things to be easier for my family when the time comes. Getting rid of crap, getting paperwork in order etc. I had a breakdown the second day after the test but am basically OK. It's not like I didn't expect it but I didn't expect it this soon. My stupid MO said 3-5 years on Verzenio. I don't want anyone to ever give me a time frame for anything ever again. I made it 6 months, if that.

In the meantime, I stopped Verzenio two days ago (YAY!!!) and will appreciate the break from the D and everything else for the next two weeks or so that it will probably take me to get on to something else. I am going to eat everything and drink alcohol because I think life will be different pretty soon. Seriously, I am just so happy not to have D. It takes so much out of me.

Any advice for me at this juncture? This board has helped me a lot.

How is everyone else doing?

@dulcea So sorry to read about your progression, but thanks for the insight. I guess I will not ask to drop down to 50 mg! I have been on Verzenio for almost two years now so fingers crossed I get a bit longer on it even with the SEs. I don't have the mutation so I am unsure what my next treatment will be. I don't even know why I think about it, but I do. I fight depression and won't even admit it, but it lingers in the background. We all think about the future and want more of a good life and less struggle. I know I have been losing ground lately, increased fatigue, etc., but when I am with my family I still want to hold on tight.

Thanks everyone. Yes, @lacombattante, checking for further mutations (which includes receptor status) is on my list to discuss with the MO. Something happened here, clearly. I agree that its hard not to know what comes next. Thankfully, my second opinion doctor laid it out for me. My original MO just threatened IV chemo for the rest of my life with no explanation. My SO doctor explained that IV chemo for stage IV is weekly at lower doses so it's not as bad as the usual IV chemo that they hit stage I with. She also explained about my mutation which gives me another treatment option. I'm glad I don't see the original MO as you can tell. You could inquire about next steps just to ease your mind. I do see so many other names of treatments out there but have not taken the time to see what the requirements are. There are also clinical trials one could get on.

I do wish there was a flow chart for next steps, but the doctors tell me that everyone is different and things can change so it's not so cut and dried like that. Too bad.

@intolight lowering the dose does not effect the efficacy according to Lily who make Verzenio. According to their studies, about half of people lower their doses to relieve side effects and it does not change the effectiveness. Have you talked to your MO about lowering your dose and how it will affect the cancer? So, my progression was not from taking the 50 mg (Plus, I could feel the liver thing prior to even starting the 50mg) but I do wonder if stopping the Verzenio for a week for surgery in April (again, told to do this by my original MO) gave the cancer a opportunity to get a foothold. I am really not sure how all this mutation stuff works but I can't look back now. I feel like I keep depression at arms length too. Whenever they ask me in the doctors office if I'm depressed, I say, "Not yet". Hang in there and look into a lower dose. It might help you to gain some ground again.

@marcials1, Piqray is for people who have a PIK3A mutation. Have you had a blood or other biopsy to check for mutations? SUV uptake is how much the tumor has taken up the radioactive material they give you. The more the uptake, the more active the disease and the more likely it is cancer as opposed to just a benign tumor. I'm not sure what the reasons, but if they are telling you to stay on 50 mg with no progression, that sounds logical. Stable is good. I just turned 60 too and would love 7-10 years. Bring it on. Nope. NO more verzenio for me. It's not working at all at any dose so why torture my guts and poor little butt?

My mother had breast cancer (DCIS) and chose mastectomy. When she went for a chest x-ray for the surgery, they found lung cancer. A slower growing rare kind. She lived with that for 15 years along with surgeries, chemos and targeted therapies, and died when she was 82. It wasn't always fun for her but she did stay positive throughout it all. I do think it helped her quite a bit.

I apologize for scaring you all too, but for me its reality. Unfortunately. Thanks for your feedback and thoughts.

@dulcea I lasted about a year on Verzenio. I was on 150 twice a day and developed pneumonitis and had to go off of it for a month while I took prednisone for it. My oncologist lowered my dosage to 100 but one brain met grew and my liver mets grew. I’m now on Xeloda, Faslodex and Zometa. And so far it’s working really well. Maybe something else to ask about? I don’t have the Pick3ca mutation

FYI there is an interactive metastatic decision tool available to us. If you search

you should find the board that has the link. You have to sign up with an account and the crazy thing is that is asks what your specialty is so you have to pretend you are a health care provider but then it clearly is for patients. It is for people who are at a decision point but you could definitely get some info out of it. It will ask you your treatment history, your stats (HR and Her2) and what your treatment plan is and then it will give you other options.

I said my plan was Truqap and it suggested Piqray, chemo, a clinical trial or an "ADC" - whatever that is. I guess I'll be checking with Dr. Google tonight about that.

It might help you ladies who need to know what Plan B might be.

@cure-ious thank you, thank you so much for the detailed information! As you can imagine, I have been doing a ton of reading, but this information has given me so much more information. Thank you for sharing the knowledge.

Today is my appointment with the MO so I'll add this to my list. I still have to contact my SO doctor too for her advice. The more brains working on this, the better!

@dulcea Sorry to see you go. I may sneak a peak on the truqap board to see how you are doing. I will see how my CTscan goes on the 12th to see if I need a change also. I know I am losing ground but have no clue why other than increased fatigue. My only mets last time were to my liver hence the CT scan.

@intolight I hope you get to remain on Verzenio for longer. I hate to say that because of the SE's but it is what we're used to and moving on to something else can be intimidating and cause unease and stress. Try not to think about it! If you get to a point when they start talking to you about it then I'd start doing the research just like @dulcea. Having the information from this group is so so helpful to me and I'm grateful for it.