Abemaciclib Verzenio for Stage IV
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Dulcea, I do take Verzenio breaks when I am ill. Recently I cut down to one-a-day when taking a week-long road trip. I found it helped. I have been stable for eight months now even with short breaks. I don't find my SEs are too bad when restarting.
My scalp does hurt all the time. I recently I had a haircut because my hair is like straw and was very unmanageable. I usually wear it in a bob. The girl cut it way too short and I was a little upset, but it seems to be coming back okay. It is not even an inch long in the back. grr… I am hoping that the too short cut will actually help…we shall see! Gotta make lemonade!
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@intolight thanks for sharing your experiences with taking breaks from Verzenio. I'm glad to have this opportunity to experiment with it. I'm sorry about your hair. Why does it have to effect our hair?? It's just not fair.
Are you like me having gone out and bought all kinds of hair products that say "volume" or "hair health"? My dermatologist specializes in thinning/balding hair and she thinks that minoxidil would work but she also doesn't think I would become completely bald. I beg to differ on that one based on the hair in the shower. It didn't even slow down when I took my vacation from the pills. Maybe the hair loss is from the Faslodex.
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@intolight it's hard giving up that stuff, isn't it? I also pretty much stopped drinking a month or so after being diagnosed. Mainly because I was always nauseous but with the liver mets, it's probably not a good idea to drink every day like I was doing.
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@dulcea Yes, and I miss soft hair. Mine is dry and brittle. I told the stylist I wanted short in back and long on top—what they call a pixiebob. I got extremely short all over except for length at the bangs. It may be modern, but not what I told her I wanted. I have slowly shortened the bangs to catch up—I used to have a cosmotology license so I am not afraid of doing it myself, but I can no longer reach the back. Eventually it will be better, but as you know our hair now grows slowly if at all. Even this short I still lose a bunch every time I comb it. Stylists should know you don't go that short as it shows how thin it is…arghh! I don't drink so that was never a sacrifice, but I did want a shot of whiskey or something after that appointment!
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@intolight sorry, I mixed you up with going2beatthis about drinking.
Yes! Soft hair! And I agree that short and layering (that's what my stylist does to me) is not good for us. Have you considered a wig topper or even a wig?
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I wonder if anybody here takes Celebrex and Verzenio together? I was on both, along with two endocrine therapy drugs (Faslodex and Enobosarm; i know, its A LOT of drugs), when my hair started falling out like crazy and my liver enzymes went up. I decided to drop the Verzenio and upped the Celebrex to twice a day, and now bloodwork shows liver enzymes dropping and TMs dropped 16 points. So now I wonder if it is toxic to take Celebrex or Verzenio together? I take the Celebrex for PI3KCA mutation, so did not want to drop that one, dropped the Verzenio instead.
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Me again complaining about these side effects.
Does anyone else deal with mouth sores? I am so done with these. I really notice them now after taking a week break and not having the issues. Mine seem to always be at the back and sides of my tongue. How do we deal with these? Salt water doesn't seem to help.
My onc can't ever see the sores so doesn't think they are there. My last visit was a few days ago and I exclaimed how good life was for that week off the verzenio and asked if people do that often. Her reply was that I am the only patient who has side effects on verzenio. I call bullshit on that. She floated the idea of changing meds because it also takes away my appetite and I have lost 15 pounds so far. I don't think I'd change meds at this point since it is working great, but I might consider a reduction in mg even if it's 50 at night and 100 during the day or something like that. Is anyone at 50? She told me to ask my second opinion doctor since she is leaving soon anyway and I won't see my new local onc until July.
@cure-ious did you really mean Celebrex or something else? I believe Celebrex is for arthritis or pain relief.
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@dulcea It sounds like your current onc is just filling time. Yes, there are many side effects with Verzenio. There is a prescription mouthwash you can use. Pharmacists call it "magic mouthwash." I am trying to remember the medical word, but it is something like dexamethasone… You might ask. I gotta run but I will try to help more when I return from my dr appt.
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Thanks @intolight . Yes, they have a liquid dexamethasone that is used for mouth sores. Thanks for the hint. It gave me something to go on. Everything else just seems to recommend rinsing with salt water. I will ask about this!
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I was on Verzenio 150 mg 2x day for 10 days. Lots of side effects. Felt like a pile of **l!&% every day. I skipped one morning and felt a little better. When I finally reached my oncologist nurse they pulled me off of it for now. Likely will reduce dosage next week. What I am wondering as I'm reading this forum is: do you all take yourselves off of Verzenio for breaks when you want or need to? For short terms or longer? Have you ever been told by Oncologist that is a "no-no"? I can understand needing to do it for our sanity! I am off now for 2 full days and almost feel human again. Any input would be greatly appreciated!
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@marcial Coincidentally, this was part of my conversation today with my second opinion doctor.
To begin, I also started on 150mg and felt HORRIBLE. So nauseous as well as everything else. I felt so much better when they reduced me to 100 mg 2X/day, although still I have a lot of side effects but they are mostly manageable, just really annoying. I think if you read back a bit, you might find someone who started with 50 and then slowly increased. This makes so much sense to me. My body has gotten somewhat used to it by this point so I think a slower introduction makes more sense rather than BAM!!
Recently I had gallbladder surgery and my onc told me to stop the Verzenio 7 days before surgery. Wow! I had an appetite (this was the best part!!), I was hemming curtains and cleaning out cabinets, I wasn't in bed at 8, I had no mouth sores, my rash went away etc. etc. I asked my local onc if she thought taking a vacation from the verzenio during my July vacation (also a week) would be OK. She thought so but wanted me to check with my second opinion onc at Beth Israel Deaconess in Boston. HEr response was "no way". She suggested reducing to 50 mg 2X/day and hoping for less symptoms. She didn't think I should take the chance.
And this could be coincidence or a reason not to do it. My cancer does not shed tumor markers. My numbers have always been low in the normal range. My highest has been 10 (CA-15-3). I took a 7 day vacation from Verzenio and then 7 days after starting Verzenio again, my tumor marker was 20. Although still in the normal range, it is the highest it has ever been. My S.O. doctor didn't know what to make of it. Is it significant or not? Its higher but still in the normal range. Then she realized it was right after my vacation from Verzenio. So of course, we are going to retest that number in a few weeks.
But if you also read back a month or two you will see what other people do. Some do take vacations from it or cut back if they are not feeling well.
And to make things even more confusing on how to answer this, after taking this break and starting back on, I feel pretty good. I feel like it has "reset" my symptoms. The originally returned in full force but now they are not as bad! It has only been 15 days since I've been back on it so maybe the worst is yet to come as it builds back up, but I hope not. To me, this is a good reason to take a break from it for quality of life if it might reduce symptoms overall, so I agree with you there.
Haha! Did I answer your question? Lots to consider.
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@marcials1 - Here is my story, some the same as dulcea, and some a little different. Goes to show that everyone is their own person.
I have been on Verzenio since March of 2021. Started at 150mg. Had started Letrozole the month before. I responded very well to this combination. My markers were in normal range in less than 5 months (and still are). Due to extreme fatigue that started in Oct 2021, my MO suggested decreasing the Verzenio to 100mg. At the time, I decided to deal with the fatigue till I reached 1 year. I finally agreed to the dose reduction in March 2022.
I recently took a 2 week "vacation" break from the Verzenio (2/7 to 2/20) and a 1 week break from the Letrozole. About 4 weeks later, I experienced the worst bout of diarrhea that I have ever had. My neutrophils were the lowest they have been in 3 years.
I contacted my MO’s office since in addition to the big D, I had been experiencing some stomach issues for a couple of weeks and the skin on my fingers had been peeling. Her nurse practitioner said this was probably because my system had to get used to the drug all over again.
Before my break I had taken probiotics every day and drank lots of (about 100 ml) water every day. Had not been as vigilant about doing so when I went back on the Verzenio what with traveling and all. Am making sure to take my Bio K+ every day and my vitamins. I am definitely convinced that they are the reason I didn't have any side effects before. No more diarrhea!!
Funny thing happened at my MO visit on Monday. I told her that I will never take a break again and wished that she would have told me that there was a chance that I might get bad side effects when I resumed them. Her comment was “Oh, like you had before when you first went on it.” I had to remind her that I never did have side effects when I first started taking it.
By the way, if you are experiencing thinning hair, I have found collagen helps not only with my hair but also with soft nails.
Best of luck!
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@dulcea You actually did answer my question! Thanks. And I agree 100% that we should start at the lower dose and work our way up to the higher. I get their reasons for starting high I guess, (that BAM effect!) depending on the specific conditions of each patient, but honestly I think my body would have appreciated the 50mg to start and work my way up. Instead my body went into rejection at 150mg and now I'm off completely which has to be worse than at least being on a lower dose. Now I have 0 in me trying to attach the damn cancer. Maybe logic just doesn't apply. If I know my body is on a revolt, I'll take a break when I have to. Interesting about your tumor markers. Mine are off the charts most recently. So I'll be interested to see what they are on Monday when I have labs done. I was only on for 10 days so likely nothing to see. Good to hear that maybe you have "reset" and that you won't have the side effects as much. Fifteen days seems pretty far into it so keeping fingers crossed for you that you are good to go!
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It looks like we all respond to mini-breaks differently…no surprise. I started on 150 mg and was lowered to 100mg after three months. I have done well now for two years staying mostly stable. (It has been eight years since my original dx.) I occasionally take a day or two break if I feel like I am getting a cold or am going out-of-town, but that is about it. My tumor markers are not reliable and remain low in the normal range. I don't discuss my breaks with my onc but my Faslodex nurse checks on me when I go in. She just says ok (not much else she can do.) My side effects do improve during my breaks but I don't notice an acceleration after. It could just be because they are inconsistent any way I take it.
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@going2beatthis Thanks for your input. I forgot to mention that I started Letrozole about a month prior to the Verzenio. Minor headaches is about all I got from that. Then had 5 days radiation with 2 days "off" prior to starting Verzenio. So I was already tired and nauseas when I started. And it all went down hill from there. I forced myself to eat and drink vitamin shakes. I had not heard of taking probiotics. And I have not taken vitamins in years. Interesting. Strange you should now have the side effects although did not when initially started taking. It blows my mind that you stayed on long enough to get the year and that you were not happy for the reduction. But we are each different in what we need and what we can tolerate. I am learning that here thanks to you all. I also take a seizer med (generic Keppra) but was told there are no interactions with that. Honestly I don't know who to believe or trust so am always looking out for myself. We all obviously have to do that. Oh and I don't have the thinning hair and nail issues yet but won't be surprised if I do, so thanks for the tip on that!
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@intolight Thanks for your comment. Encouraging to hear that the 100mg works better for you. I didn't make it 2 weeks forget 3 months so hoping I will feel a difference. Just curious do you (and anyone reading) have days that you feel 100% your normal self or at least even close while on Verzenio? Do you perform your normal daily activities?
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@marcials2 I “played around” at the beginning of starting the Verzenio. Although I was told I could take the Letrozole at the same time or close to when I took the Verzenio, I found that doing so caused cramps in my legs. I also played around with the amount of water I drank. I shortly learned what worked best for me.
The vitamins that I take are D3, K2 and a B complex. I also take Calcium Citrate and sometimes Magnesium Glycernate. As for the probiotic, my sister recommended one she had used when she went though chemo for early stage breast cancer 12 years ago.
I do have days that I am more energetic than others and found that walking 2 miles a day actually helped with my energy level as well as maintaining my weight. Unfortunately, due to an issue with the tendon in my leg, I have not been able to do that for about a year now and have put on weight. 😕
The thinning of my hair and the issue with my fingernails did not happen initially. Started to notice it after about 6 months of treatment.
Definitely agree with your comment about “not knowing who to believe or trust”. You have to be your own advocate and hope that you have a really good doctor. Not to scare anyone, but I had an experience this week where my radiation onc (ro) disagreed with the finding of the Neuroradiology fellow who read my MRI. He found that the skull lesion had grown and was NOT “grossly unchanged” as reported. He also found that there was mild uptake in that area on my last PET despite the fact that there was no mention of it by the radiologist who had read that scan. Thankfully, my ro reads the films himself and does not just accept the report. He mentioned to me that he is one of few, if any, that he is aware of who does at the center I go to. In my case, this “error” is not a small matter. It is what is determining whether I do radiation to the area or not.
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@goingtobeatthis that is awful about your radiologist reading your scan wrong. It's more than awful! It's scary! I also wonder how accurate they are reading the scans when they do it all day long and maybe they just want to get to lunch or go home so are not accurate in their interpretation. I get upset when they don't address a lesion that was there the previous scan whether it's good news or not. You are very lucky to have someone looking out for you.
@marcials1 I also have good days and bad days. My bad days seem to be related to dehydration. I have had to have some IV fluids a few times on Verzenio because it dehydrates me and it takes a few days to get back on track. Sometimes it's due to D (which I don't really deal with too much) and sometimes it just must be not drinking much. I do always have water with me and try my best but I guess that's not always enough. So keep drinking water!
Having met with my second opinion doctor yesterday, she took more blood for tumor markers, which my local onc does not even bother with since I have never had an increase either my first time around nor when I was diagnosed with metastasis. So wouldn't you know that all three tumor markers that she tested are all high. (CEA, CA 27-29 and we already knew that the CA 15-3 was higher but not in the high range). What does this mean for me? Does this mean that after having a clear PET in MArch that now the cancer is running rampant again or is it normal for people with MBC to have higher tumor markers? I want to cry. I hate this roller coaster 😞
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@going2beatthis I'm sorry that you have to now worry about the tumor markers. Are you going to get a clear answer from either of your doctors? When do you plan to talk to them. I remember when I looked up some of my initial high tumor marker numbers that were crazy high and reading that with MBC there are at least 2 types of markers that'll have insane high numbers just because of the MBC and they are not real numbers. I have an appointment with my PA Monday and I'll ask her that. I hope you get an answer but I'll let you know what I find out as well.
Strange I've been told over the past few years of being cancer free that tumor markers are "not even used anymore". Imaging is the accepted method by the AMA guidelines or some such bullshit. Why not use tumor markers as a first step - less invasive and less expensive than an MRI. I know for the first year I was checked every 3 months for markers then that went away. So do they not count in between initial dx, cancer free, and now MBC dx. Confusing.
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@dulcea @going2beatthis Hi - I think part of my comment to @going2beatthis was meant for @dulcea! Sorry I get confused on these email trails!
By the way, these skull lesions freak me out. I am having a second MRI done in 2 weeks because of weird headaches and mini seizures. The fun never ends!
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@dulcea @going2beatthis Thanks to you both for the water intake input also. I try to drink lots of water but it is hard and I know I need to drink more.
If they lower my dose and it is tolerable fingers crossed, I'm hoping to maintain a normal weight (I've lost 15+ lbs due to radiation & Verzenio) and actually go walking again. I miss just going for a nice 2 mile walk.
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@marcials - even at 100mg I still drink a lot of water. You might try adding a flavor to it but suggest you use one low in sugar. As I said before, I think my water intake is why I never really got diarreah.
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@dulcea - my CA 15-3 tumor markers went from 216 a month before starting Verzenio to 879 a few weeks after. They were slow coming down (several months), but my scans at 4 months showed marked improvement, and I was NED at 7½ months. Personally, I think the TMs spiked because the drugs were rapidly killing the cancer off.
I didn't ask for a dose reduction until NED. I had asked my second opinion doc how long I would be likely to live without treatment and the answer was 'less than a year'. At that point, I was willing to put up with a few months of misery (D, food aversion, and extreme fatigue) for the right results. The eating and fatigue improved after a few months, and even more after the dose reduction.
When I had my parathyroidectomy, no one suggested taking a med break, so I didn't even consider it.
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@seeq thank you for your comforting words. I have never had any increase in any tumor markers so this is odd and scary to me. I wonder what it means. Has my cancer mutated again? Even when I was first diagnosed with MBC, my 15-3 was 7 for three months.
Now that you mention it, I do remember reading about tumor markers increasing before decreasing with treatment as it sends it running!
The second opinion doctor took these labs as a "baseline" she said. Good thing she did. I am so glad that I chose to have a second opinion doctor even though it's a pain to get to the hospital in Boston.
I didn't ask why my local onc suggested a week off Verzenio for surgery. I was just happy to do it!
I don't know what this all means but I'm sure I'll be hearing from someone.
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Wow, so much variety! I drink water all the time and still have daily diarrhea. Sometimes it is minimal and others it takes me an hour or more to feel better. The water is crucial so I don't get dehydrated. I do have good days where I feel ok but the fatigue is always there. I may have a good day but I know if I do too much, the next day is not so good. I hate that I have to pace myself. My tumor markers were never reliable. My previous onc stopped using them, but my new one since my move always takes them although they are never high. As long as we communicate and I am doing well I won't complain. My weight has remained stable the last two years on Verzenio even with the D. I force myself to eat regularly, but I need to walk more. I could never go 2 miles. Last year I walked 1/2 mile to the GD bus stop and back, but couldn't do it this year once it turned cold. Perhaps now that the weather may cooperate I can walk outdoors. We are still having occasional light snow and freezing temperatures. Hopefully next week it will start to warm up.
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@dulcea, it's understandable that you would feel anxious upon hearing that your tumor markers are higher than they were initially—especially if the MOs you've spoken with haven't given you a clear indication as to whether this is concerning. I think asking follow-up questions to the second opinion MO could be helpful in gauging how she is interpreting them. Tumor markers alone aren't diagnostic, but they can be one tool that some MOs use to monitor growth.The degree of value assigned to them as a tool varies between MOs. Secondly, it could be helpful for you to ask your current primary MO why they feel it is has not been necessary to monitor your tumor markers.
Here is a quote from a paper published in 2022 on the updated ASCO guidelines regarding the use of biomarkers in metastatic breast cancer:
"In some cases, there is controversy regarding the most accurate or appropriate test for a biomarker. Additional controversy surrounds biomarkers that accompany tumor-agnostic drug approvals. These approvals may have been based upon studies that did not include patients with breast cancer, or for biomarkers that are extremely rare in breast cancer, such as NTRK fusions. The Panel noted that, although there may be insufficient data to support testing all patients with MBC for such alterations, clinicians should be aware of these should they be incidentally detected, or for the patient who has exhausted all other treatment options."
https://ascopubs.org/doi/full/10.1200/JCO.22.01063
It could be interesting to skim the article. Perhaps it could inform some additional questions for you to bring to your MOs?
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Thanks @moderators . This is a subject I have never researched since my markers have never increased.
I will definitely look into this. Thanks for looking out for us!
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Thank you for all of your information on Verzenio and how to deal with side effects. And for what you all do to help keep yourself going forward. I was only on it for 10 days and was really not functioning. Part of my issue was with seizures I get that were coming back. Besides uptown D and constipation. And nausea and everything in between. I had no break between radiation and Verzenio and my oncologist PA said I had been in "the perfect storm" that threw me for a loop. So now being off V for 6 days I really feel like myself. I know that will not last because I'll be going back on it. But reduced from 150mg to 50 mg. The 150 really kicked the butt out of the cancer - my markers went down significantly - but it was too much to for me to take and have even an ounce of quality of life. So I am looking forward to continuing on 50mg and maybe bumping up to 100mg. Seems much more doable for me. Now next week it's time for another skull MRI because of the seizures and headaches. Hoping for the least difficult next step. I hope you all are having more good days than bad. I am so grateful to receive input from you all and hope you all are doing the absolute best that you can. Joining this group and hearing from you has given me a place to look to for advice and encouragement.
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@marcials1 I think a lot of us experience the crappy side effects at the start of taking Verzenio, although I can't speak for everyone. It seems some people don't have all the side effects I've experienced (lucky ducks!). I will say that I had a hard time at the beginning but after about three months, things settled down quite a bit, so hang in there! Even the D has settled down.
I'm sorry you are here, but I'm glad you are because there don't seem to be a lot of people participating in this Verzenio chat and you seem very interested in participating. It does make me wonder why there aren't more involved. ARe they just lurking or are there less people on Verzenio? What is the difference from the Ibrance chat (that I was on momentarily) that seems much more popular?
I am sorry you are dealing with seizures (!). My goodness! I hope you get that figured out.
Do you know why your onc decided on Verzenio for you for your first line of treatment? I was placed on Ibrance first and my onc explained that it was the first CKD 4/6 inhibitor that was approved for MBC by the FDA so it is typically the first line of treatment people are prescribed. That was her explanation and her opinion anyway.
Good luck and keep us updated.
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