Abemaciclib Verzenio for Stage IV
Comments
-
@intolight Thanks for that info. Hope you are doing well.
0 -
Dulcea and Marcials - I got sick on the 4th of July and I don't think it was Verzenio, but some food I'd had the day before at a restaurant (I haven't had the D problem with Verzenio). I took 1 Imodium the afternoon of the 4th, and only now am I starting to feel better after dealing with the Imodium's own side effects. I wonder sometimes about drs pushing this stuff and if they've ever taken it themselves. It intesified my Verzenio side effects (fatigue, muscle and joint aches) and gave me some bad heartburn, headache, and stomach pain. I also got very drowsy and more. It could have been the food poisoning I think I had, but those are also side effects of Imodium; easy to google. The only good thing for me in that whole experience was that it did stop the D that was getting very bad. Broth and saltines might have been the better option. I've always felt worse during the rare times that I do break down and try an Imodium. I don't know how people do 2 at a time and for days in a row!
Also re scans - Give them some time. When I had been on fulvestrant for about 3 mos and Verzenio for 2.5 mos., I had my first scans. There was one small spot of progression on a bone so my onc at the time was all ready to declare that the drugs were not working and planning a switch to regular chemo! I told her I had read that it can take as much as 4-6 months to see improvement and she said, no that 2 months was plenty. I told her I wanted to stay the course for another couple of months and she reluctantly agreed to another month. She then went on maternity leave and I had the new scans about 2 months later. I also began seeing her "fill-in" oncologist (who is now my regular oncologist) and when he viewed the scans after that extra 2 months, he said they were fine (that progression was no longer there and there were many other improvements too) and that I could continue on the fulvestrant and Verzenio. Well, now it's been about a year since the original onc told me the drugs weren't working, and here I am still on them with stable scans for all this time now. Do give it time, and advocate for yourself if you need to. I made a permanent switch to the "fill-in" oncologist and am glad for my decision to do that every single day!
Intolight - Re red cell counts, mine hover around 3.5 and they seem awfully low to me, but my oncologist says it's normal for what is seen with Verzenio and he is not concerned as long as they seem to be stable and not super dramatically out of range.
1 -
@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?
0 -
@marcials1 I also started feeling bad about a week ago with the same symptoms—weak, dizzy, nausea and headaches. I am beginning to feel better today though. Maybe something. Is going around? I always assume it is the meds.
0 -
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
1 -
I got sick after the 4th as well. I thought at first that I overindulged on left-over BBQ the next day, but a fever came with it so I'm thinking viral or bacterial. My appetite was still good and I ate pretty well. BUT…guess what the other side effect was??? You guessed it! DX100. Oh boy. And body aches and pains. My poor belly just hurts to touch it. It is getting better so don't tell me to run to the doctor.
I hate telling family and friends that I am sick. They all suggest that it's my medication or cancer coming back. They all get so scared and have all the answers that are cancer-related. They won't consider that it might be a virus I caught! Makes me mad. I am more than my cancer people. Move on.
I don't know if I get side effects from the Imodium since I take so much of it lately (three times yesterday!) but now that you mention it @threetree I felt soooo good and normal prior to my Verzenio vacation when I was only taking Imodium once or twice a week. I long for those days. Since I am so senstivie to medication, I'm sure it's effecting me somehow. I did look into alternatives and there is a prescription medication but Imodium works better than the prescription. I have no choice but to take this. I had D five times yesterday. I drink so much powerade and water too and that is keeping me alive. Literally.
I have been surprised that I have no joint pain after starting on my medication regimen. I'm not sure what has helped it but I'm not complaining. It could also be from stopping the AI that didn't work, but I've had joint pain for years.
My doctor said that Verzenio itself causes fatigue and so does low hemoglobin. She won't treat me until it goes below 10, and mine hovers just above that at 10.1. I'm not sure what the treatment is but it may be infusion or transfusion
@threetree I remember reading about your decision to give Verzenio more time. YOu are so smart! Imagine if you had been on IV all this time? Yuck!
@AJ how long did your covid last? Hope you are 100% recovered.
0 -
@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!
0 -
@dulcea , my Covid lasted about a week. Other than missing out on a neighborhood party it wasn’t too bad. Felt just like a bad cold. These days, if I feel like I’m coming down with something my first thought is to test for Covid. It seems like Covid is more contagious than colds or flu. In the last four years I’ve had Covid twice but haven’t had a cold or flu. Test early test often, that’s my motto.
1 -
No Covid for me. Thankfully. Just general crappy feeling. Meds likely.
1 -
Hi fellow Verzenio takers,
I need your help, please.
Have you experienced liver toxicity on Verzenio and how your MO managed it? Did you take a break and restarted with a lower dose? What is your our experience?
My case: I have been on Verzenio and Fulvestrant since March. My MO originally started me on 100 mg dose, given poor state of my liver at that time. After the first four weeks the labs looked good and she upped the dose to 150. Well, after two weeks the enzymes went up to Grade 2/3 toxicity. I stopped for a week, the values went down and I restarted at 100 mg.
My first on-treatment scan two weeks ago, in June (PET and MRI) showed 50% reduction in liver mets size and decreased uptake on PET so the treatment is working. BUT… my liver enzymes jumped up again. My MO insisted that I must take another break, now about two weeks to let my liver recover and restart at 50 mg. She claims that efficacy is not inferior according to the studies.
Goes without saying that I am completely freaking out and feeling hopeless. Even if efficacy is not inferior, and two weeks break will not bring progression, what if I face the same liver toxicity on 50 mg? Then what?
I occupy myself with work and sports but cannot avoid the stark reality. I always been a fighter but I just cannot find it in me anymore.
My on-screen name is just the opposite of how I feel now.PS. I asked my MO about other CDk4/6 but all of them have similar liver tox profiles and she is very keen on Verzenio for liver mets.
0 -
@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?
0 -
Thank you very much for your reply, marcials1. It is very reassuring to hear about your experience and to know that 50 mg kept you stable.
I was wondering the same about toxicity and liver mets; that was one reason why they started me on 100 mg rather then 150.
I have a consult with my MO on Friday, after blood test to check the values. I also see pharmacology experts from the University Hospital in Geneva the same day (MO requested their opinion). Hope I will get some answers.0 -
@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.
0 -
thank you, @dulcea, I have rechecked my AST/ ALT values from the last week blood test and my AST value is still G1 toxicity. ALT breached into G2 but still on a lower side. Instructions for managing toxicity clearly state that G1 and even G2 requires no dose adjustment.
my total bilirubin is perfect.
I think that it is the fact that the increase to G2 is recurrent, that worried my MO so much. The big question however is how “recurrent “ is defined in this case. I hope to find this out during my meeting with clinical pharmacologists.
They have not checked for mutations so far, but it is certainly on my ‘topics to discuss’ list.0 -
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?
3 -
@dulcea Good to hear from you! I'm sorry to hear though that your PET scan was not good. SUV uptake instead of size? Is that positive? I'm sorry I'm still learning many terms. I will have to look into Piqray also as I haven't heard of that. I'm not sure how long my Verzenio journey will be either so I need to look into what may be next. Is there even a chance you'll be kept on the 50 for a period of time instead of the 100 and see what that result is? I've been on the 50 for a few months and I am staying the same. No improvement and no deterioration. They are afraid to put me on the 100 now for a few reasons. And I was actually gearing myself up for it!
Do not be mad that you let yourself think about the future. I have been doing the things you mentioned, getting plans in order and cleaning out things, getting paperwork in order, etc., but at the same time still thinking about the future. My MO (I won't say stupid yet but it's getting close) told me to think in terms of 7-10 years. While I appreciate that optimism I guess, I'm 60 and don't feel like that will happen. Maybe though, I know I should not be negative. And you should not be either. We know that being positive as long as we can helps us in many ways. But yeah, eat what you want and drink that alcohol and enjoy anything you want to enjoy!
So happy for you to be relieved of the D. Enjoy feeling D-free and all of the other positives that come along with being off of Verzenio.
I don't have any advice because I'm kind of there with you but hope that someone can share something with you to give you inspiration and hope. Keep us posted and I'll be thinking about you and keeping fingers, toes and all body parts crossed for you!
0 -
@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.
2 -
@dulcea i am so sorry to hear about the progression. Unpredictability of our situations is hard and also driving me nuts some days. Here I am, a problem solver, who always used to have plan A, B and C, learning to live day by day… and often failing at it.
I think I would be quite mad at your MO for giving your a time frame. We are all different and our response to treatment varies; nobody knows how a particular person will respond or for how long. I complain sometimes about strictly fact based way of communication of my MO, but I learnt to appreciate that.
When deciding on the next line of treatment for you, would it make sense to request a biopsy to see if (some) lesions changed their receptor’s status? This might open additional possibilities.
Wishing you strength!0 -
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.
0 -
I'm on the road so I can't post much, but I wanted to say Truqap is a newly FDA-approved treatment for the PIK3CA mutation. Something to keep in mind for possible next treatment. My understanding is it's somewhat easier. There's a discussion thread about it here on BCO.
1 -
@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
1 -
@seeq thank you! I actually read a lot about that yesterday morning and read through the short Truqap board. Something to discuss with MO. No diabetes vs. 80% chance of becoming a diabetic is a game changer. I did a little more research on other meds too but never got to Xeloda @aj. I'll see what the requirements are. I see some people try four and five things before they go on to chemo so there has to be other options.
1 -
FYI there is an interactive metastatic decision tool available to us. If you search
Interactive decision support tool!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.
0 -
Dulcea, I'm sorry for the progression, but the good and only way forward is to get as much information as possible thru liver biopsy and/or Guardant, and dealing with the options.
Right now, you only know about PI3KCA; for that there is Piqray, but the side effects can be quite harsh, including trips to ER with out of control blood sugar. I read the dose one gets is suboptimal for hitting cancer but its as high as they can give due to the side effects. Another option is Capivasertib (Truqap), which is an AKT1 inhibitor, so its hits another enzyme in that pathway, and definitely has diarrhea and some glucose issues, etc as you can read on that thread, but maybe better than Piqray.
There are however also some more specific PI3KCA inhibitors, that either only inhibit the mutant PI3KCA in the cancer, like RLY-2608, or even target just one specific mutation, like LOXO-783. These can go up in therapeutic levels due to not having as bad side effects, and so may work better or last longer, but they are only available in clinical trials for now.
There are supplements that also inhibit PI3KCA, and may help as add-ons without having too bad side effects, such as Celebrex (prescription; 2x200mg) or Melatonin (OTC, 20mg at night) and worth trying. I just saw a paper where Melatonin synergizes with Xeloda, for example. Celebrex only helps if the cancer has a PI3KCA mutation, where Melatonin seems to help with several different cancer subtypes. After starting with some regimen, you could add on and see if any of these helps. The newer weight loss drugs like Ozempic and Montjaro on paper should also be helpful for PI3KCA and possibly other mutant cancers, but I don't know if they have even been tested on cancers as yet.
0 -
@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!
0 -
Looks like I'll be moving on to the Truqap boards. Looks quiet over there but I'll spice it up!
So, on to Truqap for targeted therapy and Aromasin for endocrine therapy. She changed the ET to really confuse the cancer she said. Changing everything is best.
She wasn't going to do the Guardant testing but I insisted. She didn't think things would have changed, but we are doing it.
I didn't ask about any timelines for anything and she didn't offer any.
So until all this is hashed out with insurance and where to get the Truqap, I'm going to enjoy life. I have no symptoms of this nasty disease except for occasional uncomfortableness with my liver, which I'm not even sure its due to the mets.
Maybe my hair will grow back on Truqap and my paper nails will grow and stop shredding. One can dream.
2 -
@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.
1 -
@dulcea I love your thought about a flow chart of possible next steps! Something like that would be so helpful. Even with so many different possible diagnoses and treatment ,having somehting like a "if you have this, then you could possibly take this" and then we'd be able to go to that link and read all of the possibilities. There must be something like that out there somewhere? Also, @dulcea another question for you - have you had liver mets from the beginning of your metastatic diagnosis or did they develop after? I just had my first negative numbers in blood work for liver so wondering about that. Has just been bones so far including skull.
I always say that I am not under any duress or have any depression. Of course I do stress and do get depressed but I deal with it and tuck it away the best I can except on those rare occasions when alone and I just have to cry it out.
I guess I need to ask about mutations. That is on my list for my next MO visit next month along with other new questions.
Thank you for your info as always @dulcea and I'll be thinking about you and want to hear what your next steps are.
0 -
@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.
1 -
@lacombattante @seeq @AJ Thank you for all of your information. It's a relief to have this board to come to.
1
