Abemaciclib Verzenio for Stage IV
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Question re Verzenio fatigue: How bad can it get? I've been taking 150 mg twice a day since May and I seem to be getting successively more and more fatigued as time goes on. I haven't even looked at this forum for a few weeks now, much less posted, because I am simply feeling just too wiped out. The oncologist says he will consider a dose reduction after my next scans that are on Dec 5. The follow-up with him is Dec 14, so it will still be awhile that I have to take this current dose. I've been to urgent care and tested for anemia, thyroid, uti, etc - all the things that can cause fatigue like this also, and none of those things are a problem. My vitals are all in the normal range, but I just feel like lying around all the time, and can't even leave my apartment these days. Went to the grocery store on Saturday and had to cut the trip short, and thought I might "drop" in the checkout line because I got so fatigued. The oncologist did somewhat suggest that it could be the Verzenio, but we haven't pursued the idea much. The only other thing is that I had my first Zometa infusion on Nov 16 and that seems to have made everything in the fatigue department even worse. I was already on a downslide, but it's gotten really bad since the Zometa. I had those awful chills, fever, and body aches for a couple of days after the infusion; also got super "wiped out" and that part just hasn't gone away and it's almost been two weeks. How badly have any of you experienced the fatigue from Verzenio (and maybe Zometa) and how did that go for you? Did it go away, did a dose reduction help, how bad did it have to be before your oncologist considered a dose reduction? Any info greatly appreciated!
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Am reposting my post from February 11th….
I started out on 150mg of Verzenio and after being on it for 7-8 months, I started experiencing extreme exhaustion and thinning hair. Despite the fact that my oncologist suggested a dose reduction to 100mg and the fact that both my makers were in standard range, I decided to stay on the higher dosage until I hit 1 year. At that time, I did reduce the Verzenio to 100mg. I will tell you that my fatigue did go away and my hair although not as thin as when I was on 150mg, is still thinner than before I started Verzenio. As for my makers (not done monthly)and PET/CT scans (every 6 months), my makers stayed well within standard range and my scans have shown no active disease since May 2022.
BTW, if you aren't aware, at one of the conferences in 2022, a study was presented that showed that one of the CDK4/6 inhibitors was found to have the same prognosis at 100mg as at 150mg. My oncologist felt that this could be true of Verzenio also. So far, that has proven true for me! 🙂I have declined Zometa so can not comment on the effects of it with respect to fatigue.
Good luck with your scans next week.
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Going2BeatThis - Thank you so much for your response, and for the good luck wishes re my scans on the 5th. It is very helpful. Interesting that it was after 7-8 months that you had the bad fatigue problem. I am at about 7 months now, and it has been so, so noticeably worse. I too have thinning hair that seems to also be getting worse. My tumor markers have stayed very low in the normal range, once I started both Verzenio and Fulvestrant. I honestly don't know how you stood it long enough to give yourself time to make a year on the 150 dose. I can't imagine dealing with this ever worsening situation until May. The only reason I was able to read and post yesterday at all, was because I skipped a dose altogether. I have done that at times when I just need to get some stuff done. I did it Thanksgiving Day also, just to be able to get out with family and friends. I hate doing it and feel like it's "a dirty little secret" of sorts, but sometimes I feel like I have no choice.
I too have serious concerns about whether a lower dose would be as effective. I seem to have heard before about the CDK4/6 study you referred to and if I remember correctly, Verzenio was not the drug studied, but they figured they could probably apply the results of the lower dose effectiveness across all CDK4/6 inhibitors. That to me is not the same as having a study done on Verzenio specifically. I've read where groups like ASCO say that patients still get "benefit" from lower doses, but I have not seen anything that says it is the "equivalent benefit", and that does concern me. So many go down to the 100 mg dose though, that I can only assume that it's not too bad to do it. I honestly don't know what else I can do at this point. Talk about a rock and a hard place! I'm really glad for you that the 100 mg dose has helped and that you've stayed stable for some time.
I also declined Zometa for a long time, but finally bit the bullet on Nov 16. My experience was no fun at all and I don't know that I want to take any successive doses, even though they say most don't have those awful side effects after the first one. Those side effects combined with the Verzenio fatigue were just more than I ever want to have to handle again.
I'm getting my routine Fulvestrant shots later today and am dreading that too; again more so than ever with all this Verzenio fatigue. It all just prevents me from doing just about anything except lying around. I've even been too weak to drive and have had to rely on a friend for the store and medical appointments. Ugh!
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@threetree , I was put on the lower dose of Verzenio because of my lung issues. The side effects are not as bad, but I still have fatigue. I’m also wondering how the lower dose can be as effective. I was bummed about the lung inflammation because it was working well.
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This quote is from the linked article about the Monarch 3 study. (Discussion, 3rd paragraph). There were similar statements earlier in the article, but this was the most succinct.
"Importantly, in the exploratory analysis, there was no apparent loss of efficacy in patients who had a dose reduction due to an adverse event, thus highlighting the importance of finding the optimal dose for each patient experiencing an adverse event, such that toxicities can be managed while seeking to preserve efficacy."
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Hi all, I start on Verzenio quite soon. Not sure of the rx yet but I suspect I'll start on the high dose first. Also Faslodex. I'm being tx at Mayo. I haven't changed my sig yet because I don't have enough information to do.
What advice would you give an active 65 year old like me to prepare for? The doc called in Lomotil, and I already have IBS issues (IBS-D), so I'm nervous. I control it pretty well as is with a lot of fiber and being careful what I eat and use hypnotherapy to calm the attacks (which have been more severe since I found out my St. IV status 5 days ago), but the Verzenio scares the h*ll out of me-that I'll be lying on a couch all day not being able to do anything.
I am also supposed to get Faslodex injections twice a month. Do you know if that's forever?
Is anyone out there still keeping active? Doing okay in spite of the side effects? It's hard to think that I can't hike/walk outdoors and go to yoga. Those are my life.
Claire in AZ
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Hi Claire,
Sorry you had to find this but glad you did. There is a wealth of knowledge and experiences here.
I reposted my experience with verzenio and fatigue on 11/28. Check back a couple of posts.
The only other RX I am on (since the begiining of my deNovo diagnosis in Feb 2021) is Letrozole.
As for diarrhea, I never experienced it. I attribute that to 4 things...
(1) I drink lots of water every day (about 100 oz)
(2) I take BioK Plus (1/2 in the am and 1/2 before dinner) which is a drinkable probiotic
(3) like you, I am very careful about what and where I eat.
(4) I told myself out loud every morning that I was NOT going to get diarrhea today when I started on the Verzenio.
Mind over Matter and staying very positive about my diagnosis has served me well for the last 2 years and 10 months (next Wed). I truly believe that is the reason I am still on my first line of treatment and am fighting this. I also find comfort in knowing that there are so many new drugs that are or will be available when and if my current regiment fails me.
Hope this helps you.
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Claire,
Everyone is different and reacts differently to treatments.
I have been on Verzenio for over three years. The fatigue in the beginning was overwhelming, but improved after a few months. In hindsight, I think my body and Verzenio were just too busy kicking cancer's butt for anything else. There was another big improvement after my dose reduction at 9 months, which is after I reached NED (No Evidence of Disease) on my PET scans. I was afraid to reduce dosage before then.
I was managing the big D with Metamucil and Immodium. I still use Immodium and Gas-X or Phazyme (for cramping), but MUCH less often than before the dosee reduction. I also, had a history of IBS-D, which I found Vitamin D helped me tremendously. I am careful about how much I eat at one time, and how much I eat of specific things (salads, bacon, fried foods), but I find I can still eat what I want.
I am still active, though not as much as before. My dh and I still travel frequently. Occasionally, I really want a nap, so I take one.
One more thought- my TMs spiked (quadrupled!) the first month I was on Verzenio, and took bout 3 months to really start dropping. But as I said, I reached NED in 7 1/2 months, so it was clearly working for me.
The first several months are so hard emotionally. Be kind and patient with yourself. You will start to feel more settled when you start your treatment plan, and more so when you start to see results.
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@claireinaz , not everyone has the severe side effects. I was able to manage them, except for the lung thing. And with the lower dose it’s even better. I still walk, hike, swim and do yoga, maybe not as much as before. I’m also still traveling!
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@threetree Hi there girl, yes I’ve been on Verzenio since Last January. My ONc Put me on it right away after 13 years NED, and even though I have all the GI, coughing at night SE’s, and extreme fatique, my cancer Antigen Markers have gone down to almost as low as when I was NED for 13 years befor bone mets appeared. Im going for scans next week and follow up with Onc but I’m insecure about lowering the dose because I’ve been normal nd unremarkable since being on it.
@seeq thankyou for the encouraging info in that MONARCH 3 article. I may have read it earlier but probably didn’t understand it as much when first reading it. I’m more knowledgable now a year later and now. I’m wondering if this treatment is also good for me to ask my Onc if He can decrease the dosage.🤷♀️. He always says “stop worrying about those numbers and terms that’s my job to keep the cancer away!” Stop going into the weeds’ you are a miracle so break out the champagne! You are unremarkle and stable!”……So I read everything to educate myself but I’m wonderingg now about my Liquid biopsy of being positive for Pk13. That was a Lab result early last year, and I remember reading it;’s a poor prognosis with Pk13. So now I’m afraid to ask for a decrease in dosage.
@claireinaz The SE’s are manageable, and @AJ is right, not everyone has the side effects the same way. and I do have them all but they are manageable♥️
Sent from my iPad
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@shanagirl Wonder if my onc knows your onc. She is always saying “stop looking at those numbers. I'll let you know if there is anything you need to be concerned about. You are my star patient".
I was very reluctant to do a dose reduction (in my case the fatigue was exhausting). I did hold out for 1 year before going from 150mg to 100mg although my onc said I could do it about 5 months earlier. It definitely helped with the fatigue. AND...my scans are nead and my markers continue to stay within the standard range 20 months after decreasing my dosage. 👏
As others have pointed out we are all different. I am not familiar with Pk13. Is that a mutation or a gene? My genetic testing done in 2/21 showed I do have a CHEK2 pathogenic variant.
Good luck with your scans next week. Sending you hugs and prayers.
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To all of you who responded…thank you so much. I'm in the crippling anxiety mode (it's been a week only since I found out), and I am dreading everything-everything looks like a dark shadow waiting to get me right now. I hope I get the response from the med that so many of you have gotten.
I try to limit my time on these boards at present because I am too scared, and it can be a trigger for me. But your encouragement is appreciated so much.
Claire in AZ
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Hello so many of you! Again, I am experiencing a lot of fatigue from this Verzenio, but getting a little more energy every day, since I'm skipping some doses. The dr is going to lower my dose, but wants me to continue taking the standard dose until the new one comes through via the specialty pharmacy, etc. So far I haven't been able to do it and for the last 3 days I've just been taking the nighttime dose (150). It does seem to be helping slowly, so my new question is how long does it take for a dose reduction to show fewer side effects - especially fatigue?
I want to comment to so many of you, now that I have a little energy, so I will do my best here. I hope I don't miss anyone. I have enjoyed reading all of these comments above, and am thankful for them.
AJ - Interesting that you still have some fatigue on the lower dose. I guess some do and some don't, but any improvement would help at this point. Also, on another older note: I told my NP that I was aware of someone who was getting Ritalin for treatment fatigue through Fred Hutch and she doubled down on her claim that it is currently against state law here. She said that when the law came into effect, they had to take a lot of people off of it, because the diagnosis doesn't qualify. You pretty much have to have a diagnosis of adult ADHD or narcolepsy to be able to get a prescription.
Seeq - Thanks so much for posting the Monarch 3 info for all. I think I'd still feel better seeing a specific study of Verzenio effectiveness at lower doses, but I don't know that I have a choice at this point.
Claireinaz - Really sorry that you are having to join us here. I'll never forget what a shocker it was to hear that I had reached this point. All we can do is take it a day at a time and appreciate the wonderful support here that we can get from others. I do Verzenio (started in May) and Fulvestrant (started mid April), and just recently had my first Zometa infusion. The Faslodex pretty much gives me just the same old anti estrogen problems of all sorts of aches and pains and brain fog, but it's been manageable. The Verzenio didn't start out too badly, but I have developed terrible fatigue over the last 7.5 months. I was very fortunate and didn't get the diarrhea. I do get some occasional gas and general upset sort of stuff in my gut, but it too has been manageable. For me the big issue has been the ever increasing fatigue. I'm guessing I've escaped the diarrhea because I eat about 1/4 cup of fresh (refrigerator type in a jar, not Bubbies) sauerkraut with probiotics (not anything like S&W in a can) every day with my lunch. I also have a bowl of good quality pro biotic filled yogurt every late afternoon. I had a banana, walnuts, and more to that. I don't take an OTC probiotic because I've had problems with those in the past. I think the daily sauerkraut and yogurt (the good kind) really help a lot! Take it all one day at a time, keep educating yourself, and you will manage for sure! There is so much help and support here. (My old childhood friend who takes me to my medical appointments and the store, etc. - especially since the fatigue got so bad that I can't drive (!) is named Claire - a good name for sure!)
Shanagirl - How do you do it?! I want to thank you so much for continuing to remember me in your posts, etc. when I have hardly been on here lately, and haven't been able to respond to posts you've directed at me. I too have scans this week (Tuesday) and am very worried as always - especially since I've been "cheating" with the Verzenio lately. Best of luck with yours! I think like your dr says, you are a miracle indeed, if you went 13 years NEAD. I should also listen to the "ignore the numbers" talk and let the oncologist do his thing (I switched oncs and think I am in better hands for sure with the new person.) His nurse told me the other day that she didn't think he would have Ok'd the lower dose if he didn't think the benefit could be the same. She says he only ever does what he thinks will work and is best for the patient and another nurse there chimed in and said how much she agreed with the first nurse, so I am going to have to trust here - something that is not always easy for me with these medical things.
Going2beatthis - I am once again happy to hear that your dose reduction has helped in a meaningful way with this fatigue. Your experience is inspiring for me.
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@threetree Hi and good morning to all here😊, @threetree , I wanted to mention to @claireinaz that you were one of the first to welcome me to the below forum when I first posted. Your words were kind and empathetic to my fears and shock of this diagnosis. That’s why I always remember you when I see you post . I only am on the below forum because it’s the most loving caring group and You’ve posted to me over there too. I also come here too because of the medication discussions….I think these two forums are wonderful for caring support for newly diagnosed Stage IV on VEZENIO PILLS &FASLODEX & XGEVA INJECTIONS. I hope to chat with you @claireinaz over there as many of you here are already regulars over ther in then”LivingRoom”♥️
My Husband, My Life, My Love, My Family, My CancerAs I go through this forced path I have been thrown down, I have come to realize the love I have always had for my husband was strong. He is amazing and I love him with my very soul and entire heart. …114328 views33462 comments1 reactionsStarted bymicmelMost recent bycandy-6789:12 amStage IV/Metastatic Breast Cancer, Open to All To Contribute1 -
Shanagirl - I had no idea! I just think it's nice of you to remember me in your posts! I really appreciate it. You always have such nice things to say and share with all of us. Wow. I too pretty much read this thread for the medical discussion and then the "Living Room" of course. Sometimes look at the Zometa and Faslodex threads too, but I've just been losing energy for a lot of the other stuff, unfortunately. Also, it looks like our diagnoses were similar and you did soooooooo much better than me with your 13 years NED. I was ER/PR+ 99% in 2018, had about a 5.5 cm tumor that was Stage 3B and grade 2. I made it 4.5 years from diagnosis to being told I had mets to bones (spine, sternum, ribs). I was so hoping to make that "Stage 3 and 5 years" group, but it wasn't to be. It seemed within my grasp and I was getting ready to celebrate 5 years since my diagnosis, but then got hit with this awful stage 4 business. It's still unbelievable even though it is reality.
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@threetree weird about the Ritalin prescription. Maybe because palliative care prescribed it? I’m afraid to investigate too much. Don’t want it to stop! Yes I still have fatigue but the poop issues are much better
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AJ - I too remain puzzled about the Ritalin thing. The NP I see is for palliative care. She told me to look it up if I wanted to. She also wondered if the person who prescribes for you (I didn't mention your name or anything like that) wasn't new here or something. I don't think she's going to get on the horn to anyone at Fred Hutch about this though; she didn't really seem all that interested, just certain that it is now not legal in our state. Like you, I wouldn't investigate further either. Sometimes ignorance is bliss. I'd just stick with what I have and be glad for it. Well, I've been skipping the day time dose of Verzenio for the last few days, and I do have a bit more energy (so can participate here again a little bit), but with the faslodex shots that really leave me wiped out for a good week after I get them, and now some amoxicillin for my sinuses, I just continue to feel like and overdosed, overdrugged, aching zombie nursing home patient. I just don't know what the answer is. I never had the GI problems, but from what I hear from others, it sounds horrible, so I am very glad to hear that yours have improved with the lower dose. I've got scans tomorrow and am waiting for the new lower dose order to come through and get mailed to me. How long on the lower dose did it take for you to see improvement in side effects?
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@threetree , I was completely off the Verzenio for 4weeks. So at first, on the lower dose, I still felt great. It’s been three weeks and the fatigue has set in but overall it’s better. And the bowel issues are much better!
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@threetree - when I asked for the dose reduction, it was for the GI issues; the extra energy was a bonus. I think I noticed it after about a week or week and a half, maybe.
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Thanks so much, Seeq. I'm so glad that you got relief from the worst of your side effect, plus a bonus in energy! I've been skipping some of my regular dose now for a few days and I think I am starting to notice more energy. Thank goodness I never had the diarrhea problem, and I feel so badly for those of you who do/did. For me it's the fatigue that is so awful. Last week, I had to cut my grocery store trip short - thought if I stayed any longer, they'd have to pick me up off the floor! This is also helping me see just what the fulvestrant does side effect wise, now that I have more energy and can see what the Verzenio has been doing. Even though I have more energy every day now, I still get very lightheaded and super foggy brained. Sometimes I feel like I'm in a daze or trance or something and my balance goes off (I did fall and fractured my arm in September). I now know that the Verzenio is not the cause of the lightheaded and "spaceyness". That's something good to know.
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Hi all, I’ve been on Verzenio for a little over a year now. I started on 150 twice a day and it was brutal. I had to take Imodium three times a day and still had issues. When it got to be too much, I’d take a break for a few days or a week. About 6 months in, I asked my MO to reduce my dose to 100 and while I still have to take Imodium twice daily, it is better. At my most recent appointment I was surprised by the news that I only have to take Verzenio for another 9 months. I’d been feeling a bit anxious about having gone to the lower dose. I wondered if I was risking recurrence so I asked if there was a benefit to roughing it out on the higher dose. The answer surprised me. The MO said that a recent study has indicated that people on the lower dose have better results and they suspect it’s because we don’t take drug “vacations” like those on the higher doses.
I feel a lot better about being on the lower dose. I have noticed that without the “vacations” I do have more consistent trouble with fatigue, but the finish line is so close! I think I can make it!
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Hi all, did you see positive results soon after beginning the med? How long do they wait to test to see if response is working? I feel like I'm sitting here spinning my wheels waiting for meds, though I've reached out to the MO nurses asking when I'm getting this, etc. etc. I know it's only been 10 days since dx. It feels like months already.
I also haven't told many people—I'm going to keep it to family and very close friends. I've only told my therapist and boss right now. Will wait to break news to my only child and siblings after Christmas. No need to ruin their Christmas season. My daughter and hubs are decorating their new home for the holiday and she's excited about it and if I told her now, their first Christmas in their new house would always be the Christmas that mom told us B cancer had recurred. It's hard not to say anything but I love them enough to just wait.
Every day I feel like I can feel the cells just dividing, dividing, dividing…and it's awful.
And thank you all. After 10 days I have found some courage to finally come in here and read messages. I appreciate all the encouragement and reassurance; it is priceless to me during this dark time. Guess I won't pull a Thelma and Louise yet, haha (just kidding: you all know we have dark thoughts, but I want to stop this crap in its tracks and want to do it right away). I would like to tell my family I'm already on tx when I break the news.
Okay, that's it for now. Thinking too much about this makes me nauseous with anxiety. It's still so new. XXOO
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Claire - In my case it took about 3-4 months for scans to show meaningful improvement. Part of it might have been due to my only taking half the dose the first week or so, because I just wanted to see how my body would take it, adjust to it, etc., before I went full on. My oncologist at the time did scans at about 2.5 months when I had taken the fulvestrant for about that 2.5 months, but the Verzenio for only about 2.0 months. I had some improvement on that scan, but a small new spot did show up somewhere. For that reason the onc told me the meds weren't working and that she was going to stop them, and I would likely have to move to IV chemo. I was shocked and told her I'd read that some say it can take as long as 3-6 mos to see benefit/improvement, besides I was showing some improvement, as the results were mixed. She said 2 mos was enough, period, and that since I had that new small spot, that was it. I pleaded with her to give it more time, so she reluctantly gave me another month. About the time the new scans were to be done, that month later, she went on maternity leave. The scans showed that I was stable, and the substitute onc told me I was fine, but that he did understand her concern re the new small spot. That spot was gone that month later, and the new onc said the scans looked good (stable, not NED) and that I should stay on the drugs. I just had new scans yesterday which would be at about the 7 or 8 month mark. Two of three results have come in and are saying "grossly stable" (I do have 2 new rib fractures), so I am assuming again that I am considered not great or NED, but "stable". I would say to give it time and don't expect instant benefit. I have read more than once that it can take 3-6 months to show meaningful benefit. (Needless to say the substitute onc for the maternity leave is now my regular onc. I switched after that whole fiasco.)
I know it is also hard to wait for the meds. I was diagnosed stage 4 late last January and it took them 3 months just to get the scans and bone biopsy they needed for baseline before giving me the drugs. It looked like most people had only been waiting about one month, not three. I couldn't believe it and sent them an email about my concern. That email generated some action and within a week I was getting the meds (around April and May of last spring). My point is that this does all come with waiting and anxiety and possibly mixed results that might need more time, and then you might also just wind up generally OK, but not showing actual regression and NED. But I'll take stable over progression any day. Good luck, and I'm so very sorry that this has happened to you, Claire. I remember how shocked I was and how I had to just put it all out of my mind sometimes, and then take it all in "here and there". Things do get better as you read and understand more about this, so "give yourself grace" as a doctor told me the other day, and give these stage 4 drugs a good shot. We are all here to help and support you!
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Claire - I started Letrozole early Feb 2021 and Verzenio mid March. Although my CA 15-3 marker was within standard range after being on the AI for 2 months and Verzenio for 1 month, my CEA did not test within normal range until August. My first PET scan after starting treatments was not until June (after being on the AI 4 months and Verzenio 3 months) and did show “markedly improved”. My PET scans since May 2022 (I have them every 6 months now) has shown NEAD. I was initially prescribed Verzenio because of 2 lesions in my skull even though there was no metastasis in my brain. My brain MRI in Oct 2022 indicated that one of the lesions in my skull was no longer there and the second one was much smaller. My radiation oncologist had me do MRIs every 4 months after that (previously had been doing one every 3 months) and subsequently moved it to every 6 months in Feb 2023.
As Threetree said “… give it time and don't expect instant benefit.”
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@claireinaz - I'm so sorry you're having to deal with this. I remember how stressed out I was in the beginning, and how slow it was for things to get moving. In think I said, already, that my TMs quadrupled after one month on Verzenio (CA 15-3: 216 to 879) and didn't drop significantly for two more months. I say this so you don't freak out (like I did) if you see a spike early on. My largest liver tumor was very large (12.78cm) and had shrunk by HALF on my first scans at 4 months. It really wasn't until then that I felt confident things were headed in the right direction. It was nice to have "proof". There were notes in that PET scan report about new uptake in lymph nodes, but suggested it might be "tumor flare phenomenon". I didn't really like hearing that, but the rest of the report was good and my MO was thrilled, so that helped me a lot. My next scans were at 7 1/2 months and were completely clear. Everyone's response can be a little different. Things that initially sound bad, may turn out to not be as bad that bad. It takes time for the drugs to work - we just have to try to hold ourselves together while we wait. Everyone here understands how hard that is, and we're here to listen and support you through it all.
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@kathrynw1thasea - I think you might be posting in the wrong area, as this is a Stage IV thread. Your dx looks like Stage III (but so many have had trouble updating that). More telling though, it's that you have a finish line. I'm truly happy for you that you are nearly there!
There are other Verzenio threads. I think there's one specifically for Stage III, and there's one for all stages. If I can do it, I'll add links to them in a bit.
I apologize in advance if I've misunderstood.
Best of luck to you.
ETA - I see you found the Stage III thread today. Good luck!
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@threetree - another result of the dose reduction occurred to me. I gained 5 pounds in the first week! Between the D and the decreased appetite, I had lost about 20 pounds. Since the dose reduction, I have found all those...and then some. My appetite is still different, but clearly, I'm eating more. I suppose that could contribute to more energy.
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Seeq - Thanks for letting me know. I have lost about 5-8 lbs over the last few months, but for me I think it is decreased appetite. I feel so lucky that I haven't had the big D problem. Just some general GI upset - gas, cramps, etc., but no bid D! I will watch though and see what happens.
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I am on day 4 of 150 mg Verzenio. I had 21 days of Ibrance, but not consecutively, due to neutropenic fever. I got a second opinion who made the suggestion to start Verzenio since it has a better survival advantage and is a little less likely to cause neutropenia. I also had slightly higher liver function tests on Ibrance, however I read somewhere (where? maybe on here/) that Verzenio does better with liver mets.
I have been terrified of the diarrhea side effect and took an immodium with my first two pills, which is still affecting me! I have never had issues with constipation until I made the mistake with the immodium. Hopefully, this means that I will not have the big D issue, once I get past the C. I do see that a few people get by without the D.
The more concerning side effect I am reading on here is the fatigue! Does EVERYONE who takes Verzenio get fatigue? I don't think I can deal with that. I am still working since I am not old enough to retire - it actually is a reprieve from sitting home and thinking about cancer all day long - but some side effects may not mix well with working with elementary school children! So do some of you get away without the fatigue on any dose size?
My first day on Verzenio, I was quite nauseas all night and and all the next day. The zofran didn't help at all. Coincidently, I had a MO appointment the same day and she ordered 50 mg of V so that we could play around with it a little, and maybe slowly build up to 150. She did give me Reglan for the nausea which worked well, but then I read the side effects! Yikes! I have taken one only at night and have no nausea during the day.
Do people experience low ANC on this? I started with an ANC of 1.1. My MO said she has tons of people on Ibrance and Verzenio and I am the only one she has ever seen with a neutropenic fever or any really bad symptoms like this nausea (but I really don't believe her).
Also, do people have higher LFTs on Verzenio too?
@threetree I was so glad to read your account of convincing the doctor to wait another month for an updated scan because my MO is already talking about doing a scan sooner rather than later, but I have not consistently been on anything except faslodex. She is already telling me that if there is any type of progression in my liver, she is whipping me on IV chemo - which I just found out, I'd be on the rest of my life. YUCK! You are giving me the courage to speak up for myself when it comes to waiting for a scan. Wow. Imagine if you had not spoken up and gone right to IV chemo? It also made me wonder if we had the same doctor! LOL. Are you in MA?
Sorry for the long winded post but here I am. Hello V sisters.
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Dulcea - I really have learned through this cancer experience how important it is to do some of your own research, educate yourself, and raise questions when something seems fishy or doesn't jive with most of what you've read yourself. I can't say enough about advocating for yourself. It doesn't come real naturally for me, but when your life is on the line, and like what you said, if it could mean lifelong IV chemo without ever really giving these oral meds a shot, you gotta do what you gotta do. I'm not in MA, but in WA - clear across the country from you.
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