I was on 150 mg twice a day, took a two week vacation then down to 100 mg 2x daily. My oncologist is thinking of reducing it to the lowest allowable dose, 50 mg 2x. My side effects are not severe, but they persist through 3 cycles. Frequent diarrhea, occasional stomach cramps, but the fatigue is the worst. I spoke to the specialty pharmacist who seemed to think that I should stay on 100 since my white blood cell count is not low. I am not having any medical problems, just discomforts and inconvenience. The first scan since I started Verzenio indicates it is doing the job.
I know Kearnan was on 50 for a few years with success. With Ibrance, there seemed to be research indicating that it was effective at lower doses, but I haven't found any studies on Verzenio dose reduction. Anyone else take 50 mg over time? Or know of evidence that it is equally effective?
My oncologist seems to feel it works for you or it doesn't. In her experience, the dose doesn't matter that much. They just like to start with the highest dose.
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TammyCross
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Good answer. I asked my second opinion oncologist at Sloan Kettering why they don't start with the lowest dose and go up. She said I should ask for that. That didn't work with my primary oncologist. She just said this is the protocol. I will take your observation into consideration when I meet with her Tuesday.
I am on 100 mg Verzenio twice per day plus Tamoxifen .I only had diarrhea the first month.My last two scans were stable but my WBcount just remains low.
The only real side effects I have currently is hand and foot from previous treatments and fatigue .
Most days I feel really good but I do take an antidepressant and use pain
meds for aches from widespread bone cancer.My liver lesions were large in the beginning but they shrunk and are now stable too
I hope you can get over your side effects and stay at 100 mg as it seems to be working for me❤️
my feet are so gross no more sandals😩! Cracks of dry skin on the bottoms and heels no matter how much cream I use.My hands crack around the cuticles and often peel.It started when on Xeloda but I stjll have it on Verzenio..I just purchased some silicone socks, hoping that helps😁
I also got Nueropathy after my chemo infusions so that left me with numb fingers and toes.
Small matters but still annoying
I have been so blessed to rarely have any real pain,just aches.
The hand and foot is just something I've kinda gotten use to.
I have bone and liver metastatic BC after my original dual mastectomy
The disease has remained stable on the various meds given over the past couple years. I love Moffitt Breast Cancer Center and their remarkable Support Care Center!
Other than general fatigue I have no other complaints on Verzenio & Tamoxifen.
May I ask what medication you were on in the past that you experienced the hand and foot syndrome. Was it the Xeloda? And for how long are you still suffering the side effects from a previous medication? I am flip-flopping on stopping treatment completely bc I am not willing to deal with severe side effects. She told me if Xeloda does not work (like the Tamifoxen and afinitor did not) and scan showed cancer still growing in my liver, that I will have 4-6 months left (the other option is Piqray and after reading about that, I am not willing to even try that), so I am not willing to lose time I have left feeling so awful to possibly get a few more months.
She is going to be very annoyed and probably dump me once she finds out I did not even try Xeloda at a lower dose. I have read that some meds, even when they are stopped, the patient still feels side effects from that previous drug. My onco tells me nothing. I think she just goes by some handbook.
There was some talk of lowering my dose just before I left for this one month trip to nz but didn’t get done and now seeing your post makes me wish it did as I get some bad fatigue suddenly late in the day. And it would be nice to have more energy to enjoy my friends.. and the running to the toilet has been ok because so far I have always made just by the grace of god. But if there comes a random day that I soil myself, I will really be wishing for the dose reduction especially while staying with friends. So I say go for it… or consider taking the lower dose during the day and your present dose at night as was suggested by my clever Oncologist!
I wrote a long reply and it seems to have disappeared. Sometimes the disappeared messages show up later, so I won't write again, but will just say thanks for the idea of 150/day instead of 100 or 200.
I started Verzenio at 100mg twice daily, but my CA15-3 markers kept going up. My onc switched me to 150mg twice daily and markers have dropped 20 points. Its killing me though, with stomach cramps, random explosive diarrhea, shortness of breath and heartburn. I've been on different protocols for 19 years, and this is the worst I've felt.
I was on Verzenio (lowest dose) at 50 mg. with falsodex injections. (She first gave me the 150 mg. (NOPE), then the 100 mg. (NOPE) and then the 50 mg. I felt normal.
I lasted three and a half years on 50 mg. of Verzeno and the falsodex injections. I had to stop in June bc the cancer is now in my liver and spreading. I cried bc I felt normal on that combo and go so used to hearing stable.
Progression is hard! I was on a single experimental drug for a year. Felt terrific! Then it progressed. Verzenio + Arimidex has been hard. Going down to 50 mg. Hope it works for 3 years! I haven't gotten that long out of anything. This is my third.
Yes. I felt normal for so long and so used to hearing stable and then just like that, it all changed. It progressed to my liver (my ct scan in february), she kept me on the same treatment plan and my ct scan in June showed RAPIDLY increasing in my liver, and now she prescribed Xeloda.
I questioned her why when the Feb. scan showed it moved into my liver, a completely new organ that cancer has spread to, she kept me on the same treatment plan so that my next scan in June so it was rapidly spreading and a new tumor in my liver.
I said I am wondering why you did not change my treatment plan (that I was on for 3 and 1/2 years) and kept me on it, even when it went to my liver. She immediately got very defensive and I knew I hit a sore spot. I said who knows, if you would have changed my treatment plan once it spread to my liver in February, then those tumors may NOT have doubled in size.
I live in NYC boro and have decided to see if I can find an onco that specializes in stage iv cancer patients only. I think I may be her only stage iv patient and I have to see if any of these oncos may have a different choice OR it may just be the fact, that for me, it is game over bc I am not willing to waste any time I have with harsher drugs with more intense side effects.
It is now my 3 of 4th meds with no cancer meds (delay in shipping me the Xeloda) and the first thing I noticed were that my feet look normal The tamoxifen and afinitor swelled up feet almost overnight.
Now my feet look normal again. Minor observation but I just keep looking at them they look normal.
I think like one of the ladies mentioned that her onco said. "Some meds just work on some people better and for others not so." I am hopeful that this lower dose may work just as well for you and without the fatigue, diarrhea (which was my experience with the higher dose of Verzenio. The 50 mg. a day, plus falsodex injections was like a cloud lifted. please let us know how it goes and I am hopeful that if it is working for you, a lower reduction may do the same but give you a better quality of life.
I hope I have that experience with 50 mg. I am on a 1-2 week vacation from Verzenio to straighten out my gut. It has been 5 days and I still have diarrhea and nausea, and am weak. When I took a vacation between 150 and 100 mg, after a month on 150, I felt better right away. Puzzled it is taking so long this time. (Also now have head ache. Not sure what is the Arimidex, which makes my joints hurt, and what is Verzenio after effects.)
You are now saying you are looking for another oncologist? You certainly are all over the place. You have been advised to get a second opinion very many times by people on this board, and you had reasons you would not do that (insurance coverage, too defeated). I hope you mean it this time. A 2nd opinion is much easier than switching docs. And you can switch to the 2nd opinion doc if you like that person.
We know about the liver mets and your oncologist keeping you on the same Rx. You don't like, trust or respect your oncologist, so definitely should be looking elsewhere. Can you continue with the palliative doc? You say that is why you stay.
My cancer center, which is fairly large, do not use tumor markers. None of the oncologists there do bc they say it does not reflect whether a med is working. Tumor markers and rise or lower based on a multitude of reasons. I never knew what my CA markers were even now after five years.
At my suggestion, I started on the lowest (200 mg) of ribociclib (Kisqali) last November. My kidney functioning was immediately impacted but my CA 15-3 was still high so I quickly moved on to 400 mg of ribociclib. This had a dramatic negative effect on my immune system measures, but, nevertheless, a CT scan in early February indicated "worsening metastatic disease", despite a definite improvement in my CA 15-3.
Rather than giving up on the ribociclib, I suggested to my oncologist that I start taking the full dose of 600 mg ribociclib in February. As I said to him, I likely weigh more (180 lbs then but now down to 170) than many other patients so I may need the maximum dose. A CT scan in late March, and another in late June then indicated that my "extensive metastatic disease" seemed to have stabilized. My CA 15-3 now tests as almost normal.
To my chagrin, my bloodwork measures have become even more abnormal over the months. After the pharmacist expressed concern, my oncologist told me to take a second week off ribociclib in late August to allow my immune system to recover.
I started my 8th cycle of ribociclib on September 1st. Fortunately, I'm having another CT scan September 16th. I'll also do bloodwork twice before I discuss the CT scan with my oncologist to see what is happening with my immune system now after two and three further weeks of 600 mg ribociclib.
I'm hoping the CT scan reveals that my mets have continued to "not grow" (what stabilization mostly means to me). If that is the case, it seems to me that I may be able to continue taking two weeks off the ribociclib, or, try another schedule altogether, or return to 400 mg. If any of you have other ideas, I'd be very pleased to read them.
Thanks! The CT scan continues to suggest stabilization. Only one lymph node met grew a bit. Since my mets seemed to develop via my lymph system (not my blood system?), I don't pay much attention to my lymph nodes.
Kokopelli suggested that: because I am quite a small person and weigh not so much, I might do fine on a lower dose. You and she are both quite knowledgeable, and it makes sense that dosage should vary with weight. I often cut doses of nonessential meds and find they work better for me. I think many of them, especially older ones, were normed on men. When I have suggested to docs that I might need a lower dose of something because of size, they say it isn't true; that's not the way it works. - But your assessment does give me confidence to try lower.
Sorry you are having such a rough time on Kisqali. I was sorry that my onc chose Verzenio because my secondary oncologist said Kisqali has fewer side effects. Not for you! You are being very brave to stick with it and try to find a dosing pattern you can tolerate.
Thanks very much for your supportive comments, TammyCross! It makes much sense to me that smaller "systems"/bodies may need "smaller" meds. It obviously takes fewer calories to maintain smaller bodies...
The oncologist and the fellow who was accompanying her both said weight has nothing to do with dose for Verzenio. From my reading, it does -- in a category of drugs for which dosage varies by weight. But I read a couple of articles and they are full time breast oncologists, so they must know better....mustn't they?
I'm afraid not! It seems to me that most physicians rely on their status with patients rather than increasing their knowledge after graduation. Medical school can be as long as graduate school, and some students amass enormous debt so their main incentive may be to improve their financial well-being. That means billings for patient contacts rather than staying abreast of the latest research findings on a wide range of topics.
Of course you can ask to have the dose lowered. I am on 100mg. twice a day and doing ok. I weigh in at 150 lbs. but I really don't think it matters how much you weigh.
Certainly size is not the whole story. I did fine on the max dose of Ibrance.
I have been looking into size and dosage, though. There are a number of factors: volume (correlated with size), liver enzymes, metabolism, kidney and liver function, age, gender. Weight is one of them, for some medications, and abemaciclib seems to be a in a category of drugs that probably should be calibrated. I am about 110 pounds (vs. average of 145 for women at 60 20 years ago) and pretty short (5'1" vs. 5'4.5" average). There is just less of me than probably most of the people in the clinical trials in which they looked at toxicity x effectiveness.
So you can't take all that into consideration. It is, as I have said, we all different but the side effects on a lower dose are less. nd many times the drug is just as effective.
Actually, most of that is known to my oncologist, with the exception of liver enzymes I guess. Assuming everything is okay with liver and kidney function, tested monthly, it would just be weight. Maybe that is why my oncologist was inclined to reduce the dose without any medical necessity, like low wbc.
I was first put on 150 mg. of Verzenio with falsodex injections. I stopped taking it after two weeks bc of the side effects. When I went back to my onco, she lowered it to 100 mg. of Verzenio and again I stopped taking it after two weeks bc of the side effects.
She was a bit annoyed and said well, you have to learn how to deal with side effects and she gave me the lowest dose at 50 mg. (of course with the falsodex injections.) By this time, I had found this board and learned so much.
On my own, and without her knowledge, from the time she prescribed me 50 mg. of Verzenio twice per day, I had decided to just take 1 50 mg. of Verzenio. I felt normal, no more naps, not more loose bowel accidents.
I was on it for three and a half years with no problems. Just taking 1 50 mg. of Verzenio and the injections.
I had to be taken off it this year bc after three and 1/2 years, it spread to my liver. I cried bc I almost did not feel sick this entire time and it felt like I was losing a friend.
She now put me on Xeloda at 8 pills per day (500 mg. each pill). I took it once after forcing myself to eat breakfast which I never do. After an hour, I was in bed and could not move bc of the fatigue and just cried bc I cannot deal with that. Then when I got up from bed, I had severe muscle pain in both arms and legs.
I never took my second dose bc what is the point of taking a drug that is going to keep me in bed bc of the fatigue. I go back tomorrow. I know she is going to be annoyed (I am in my fifth year and feel like she is done with me).
Everyone is different though. I have read women on this board have no problems with Xeloda and I felt so horrible on it and I still had a second dose (4 more pills) to take later that day and I thought I am done. So sometimes a lower dose can work for some people.
I go to her tomorrow. I know she will be annoyed with me. I understand that there will be some side effects with all drugs, but I have been lucky, for the most part, that I have not had extreme side effects.
It has spread to my liver and is growing rapidly with three tumors. What I do not understand is that my liver function is fine? She actually told me that I will have 4-6 months if this does not work or if I choose not to continue.
My palliative care doctor told me that (she was in hospice for 10 years before this) she has seen people stop treatment and live for almost a year. (Maybe she was trying to make me feel better).
I am going to tell my onco tomorrow that I would like to try the lowest dose possible. It is not worth it to me to get a few more months, if I am just going to lay in bed and be unable to take care of myself.
My onco was then "kind" enough to tell me that I will start to feel more and more tired, have trouble breathing, will then be brought to hospital, and then they will ship me off to hospice. I cannot do hospice in my rented apt. bc I am alone. To think that the worse is still to come has me paralyzed with fear now.
She hates that I read this forum board. But I told her if it wasn't for this board, I would not have known that you can even ask for a lower dosage.
It is too bad that your oncologist lacks people skills. Her annoyance seems very inappropriate to me! Also, she doesn't sound that well informed. It makes zero sense that you will die from liver tumours when your liver is functioning normally! The reason why people can donate chunks of their liver to others is because most of us don't need the whole thing.
My liver tumours were first noted in March 2021, and a biopsy was done to confirm that they were breast cancer. I pay them no mind because I check my blood work at least monthly, and all measures of liver functioning continue to be in the normal ranges. However, my last CT scan indicated that there are multiple lesions in both lobes of the liver so it could well be that it will ultimately quit functioning. In the meantime, I see no reason to have those specific tumours removed when there are many others elsewhere in the body. In any case, my oncologist hasn't mentioned them since the biopsy was done.
It seems that your oncologist stopped your Verzenio + Falsodex simply because of your liver lesions. I wonder if all oncologists in your area would have the same approach.
It is important for all of us to be able to function as normally as possible while taking meds. As you said, it is not worth it "to get a few more months, if I am just going to lay in bed and be unable to take care of myself." The side effects of our medications must not be worse than the disease! In any case, I assume that most of us older folks would not die that quickly if we stopped all treatment because age has slowed down all our body functions.
I am just seeing your reply now bc I was off board for a few days struggling with stopping my treatment completely.
NO. She had kept me on the same meds when it went into my liver, my onco did not change the treatment plan bc of that.
But she kept me on the Verzenio and falsodex injections (which I had been on for a bit over three years), even when it spread to a distant organ my liver. The cancer had been found in my liver during the scan in February (the Nov. 2022 CT showed specks that she said they could not confirm was cancer.) I think we both knew of course it was the cancer. Confirmed by Feb. CT scan and she kept me on the same treatment and the June 2022 CT scan showed all tumors doubled in size, THEN, she removed me from my treatment plan. So for her, her not changing the treatment plan, the cancer continued to grow for another three months until next CT scan.
So in June, then it showed my liver tumors had doubled in size and spread significantly (Bolded and in all caps by radiologist doctor). I asked her why she had not changed my treatment in February bc maybe the tumors would not have doubled in size.
I hit a sore point with her defense reaction. I do not expect that they are miracle workers, but I assumed that was basic, that once it moves into a different organ, treatment should be changed THEN. But too late now.
Truly, your oncologist is even more tactless and unfeeling than mine. On the other hand, you keep asking her the hard questions: How long do I have then this happens? Exactly how will I die of this? -- I wonder that, too, and it is good to have an answer. She didn't mention pain, just dwindling down.
I don't mention this board when I bring it up. I just say, "Someone I know was on 50 mg for 3.5 years without progression." Like that. She must think I have many friends.
LOL. Thanks for the laugh. I outright tell her what info I gleaned from this board. One lady was on 6000 mgs. of Xeloda and she said she felt great. For me, it knocked me out within an hour and I was back in bed with no energy at all and thinking Nope, I can't and won't do this.
I just can't figure out why some people feel nothing on hard meds, while others have nasty side effects. I think, with me, mentally my onco checked out. Unfortunately, I love my palliative care doctor so leaving that cancer center means I will lose her. I am going to see if I can find a stage iv specialist and if I can get an appt.
I do not want to pass obviously as I am 62. So I am willing to see if there is another onco that may suggest a different med. If not, then I am done.
My current onco says "Well, I am sure once you get home, you will be on that forum board." I said yes you are 100% correct bc these are people that were through side effects, as opposed to you googling what it says I should be experiencing.
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