Abemaciclib Verzenio for Stage IV
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@dulcea - I also had terrible fatigue when I was on the 150mg twice daily. That went away (for the most part) when my onc decreased my dosage to 100mg twice a day. I never really experienced the big D, but I do drink a lot of water.
Not sure why your onc is wanting you to build up to the 150mg dosage. There have been studies with the CDK 4/6 inhibitors that have shown the 100mg dosage to be just as effective. Does she know something the rest of us don't? If my onc were to tell me to go back to 150mg, I would definitely be getting a second opinion.
By the way, I have been NEAD since May 2022 (almost 2 years) and markers are still either low or mid within the standard range.
Remember, we all need to advocate for ourselves. Ultimately, you can either agree or disagree with what your onc is pushing you to do.
Good luck 🙏
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@AJ that is interesting about the Ritalin. I'll keep that in mind if this doesn't get better.
@going2beatthis thank you for reminding me that I play a big part in deciding what my treatment is. It seems pretty common for people to reduce their dose on Verzenio due to side effects. I will ask the onc what her thoughts are about the 125 mg though and building up to it. Good question! I'll also be getting a scan at the end of February so that will determine if 100 mg is doing the job or not. I do have a second opinion doctor in my arsenal if I don't like what what my onc is suggesting. In fact, she is the one who thought Verzenio would be better for me than Ibrance.
I make kidney stones and I tend to dehydrate easily for some reason so I drink LOTS of water. I add some gatorade type stuff to my water too. Now I just need some energy.
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Is anyone using fiber supplements to slow down diarrhea? I've been using them for IBS-D for months, and although thankfully the IBS issues have mostly resolved themselves from what they were when I was dx in July, I still use fiber daily. So far so good. I am used to going several times a day anyway, so that's not changed, but the urgency is pretty. controllable most of the time.
A little complaint: why, oh why are those stupid little Imodium tablets so difficult to get out of their little blister pack holders? I have to cut each open individually with scissors since the foil on the back is nearly impossible to peel off. 😡
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Claire - Ever since I was diagnosed with cancer (about 5.5 years ago now), I have incorporated about 2.5 tablespoons of flaxseed into my daily food consumption. While not officially deemed a "fiber supplement" I think it serves a similar purpose. As before, I also do daily fresh organic sauerkraut and organic probiotic plain Greek yogurt. I've never had the bad diarrhea from the Verzenio that so many get, since I started it last May. I do get some generalized gut upset from time to time including gas, bloating, mild constipation and sometimes loose bowels, but never the extreme problems that some get.
That said, I have had a few days here and there where I have taken an Imodium (only 1 at a time and then I don't have to go for about 2 days). I totally understand your issue with getting them out of the blister pack! I too have to cut each one out with scissors and think it's ridiculous. When I was started on Verzenio, I also got a bottle of generic loperimide and a bottle of whatever the generic Zofran is (ondansetron I think). If you could get the generic from your Dr it might help, because it just comes in a regular old pill bottle that way. No cutting required! I just happened to have bought some of the drug store Imodium before starting the Verzenio, because I didn't know the Dr would do a prescription automatically, so when I needed to use it I used the drug store stuff. Now, I'd just use the pharmacy bottle and skip the cutting.
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Hi everyone, Yes those Imodium packets are impossible to open unless I use scissors to get them to fall out.🙄. They used to come in a bottle. As far as the D is concerned I will suddenly get it for several days In a row with the cramping and urgency. When I’m like this I stay in bed with my heating pad after taking 2 immodium initially. I seem to be constipated a few days following my Fasoldex & Exgeva shots, but the D resumes the following week. I have been not so bad since my Onc reduced the Verzenio to 100 mg twice a day. I’m feeling a little insecure about the reduced dose, however, because I’ve been so stable this year, I don’t want to give the cancer cells a reason to progress on the lower dose.I take the. Probiotic GX capsules, and also have a glass of my home cultured Kefir every morning.. I take my supplements with it also in the morning.
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Shanagirl - I too was recently reduced to 100mg of Verzenio twice a day, and am feeling better on it, but of course, for fatigue not D, and like you, I am real concerned about how well it will work. I saw my onc about a week and a half ago and expressed my concern and he reassured me that by all accounts this lower dose should work as well. I like and trust him much more than my previous onc (switched this past fall), and the nurses expressed confidence in his decision too, so I'm going with it. I hope this gives you more hope and confidence in this lower dose too.
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Weird symptoms.
I recently had a yeast infection. I haven't had one of those in decades. Since it has been so long since I've had one, I am assuming it is related to one of the new medications that I have been taking/put on. Thankfully a one day suppository of miconazole cleared it up. Anyone else?
I also recently have a body rash. I do tend to get those easily. I always get them from something systemic. Like when I have a fever, every time I have surgery, and I am sensitive to some antibiotics, topical things like medical grade adhesives, iodine, and chlorhexidine. I am just a rashy person. Since none of those other things have happened, I'm wondering if I am in fact, allergic/sensitive to Verzenio. It is the most recent change to my arsenal of medications I've been taking. Since I've been taking Verzenio since 12/4, I wonder if it even is that since if I am allergic to it, I would imagine that I would react to it sooner than 50 days. I have been on the xgeva and faslodex since October so if it's one of those, again I imagine that I would have reacted soonder than three months after starting those.
Also, I have been dealing with dripping eyes. My eyes start tearing up first thing when I wake up and continues for about an hour and the tears just pour out of my eyes. Sometimes it bothers me when I first get to work then it subsides. The last few days, I've had these episodes in the afternoons and its really embarrassing. I can't see through the tears in my eyes and the tears on my face are making my face dry out. I did do some research and some other breast cancer websites have suggested Systane which is an eye lubricant. That seems to help for a few minutes but then the tears start again. It seems to be related to dry eye but my eyes do not feel dry at all. Does anyone deal with this and do you know the solution?
Other weird things include a dry mouth a lot, thick green snot plugging up my nose in the morning but after a few good blows, it is gone and doesn't bother me all day. A humidifier and saline spray at night do not help at all. My hair is still falling out in gobs, which sucks, but I've also noticed my lady 'stache is so much better :)
On a side note, I've developed some lumps in one of my mastectomy breasts and will get that checked out tomorrow. I'm sure that's not a side effect, but it's just what I do. I keep acquiring nasty things in my body. Fun (she said sarcastically).
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dulcea- I also get runny eyes in the morning, very annoying, and have assumed I am somewhat allergic to Verzenio- also the dry mouth in the morning! for that i have moved to taking the pill in late afternoon. Its a dirty drug, hits many more targets than the other CDKi drugs do. No rash tho, sounds like you are more allergic
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@dulcea my optometrist said to put a warm washcloth on my eyes multiple times a day. And use the lubricant. Verzenio did that to my eyes at first but not now
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Thanks @cure-ious and @AJ
I will try more warm compresses whenever I am at home. I'll keep up the lubricant too. I hope it is just a passing side effect like AJ said. Hopefully it stops soon! Today I had tears running down my face and I didn't even feel it. I work with children and one of my students was very upset because she thought I was crying! I don't know why I found that funny.
My breast surgeon who I saw yesterday wasn't concerned about the rash, probably because her job was to figure out the lumps (fat necrosis) but she did say to mention it to my MO. I hope it's not from Verzenio. I just got to a place where I am finding it tolerable. It took a while but here I am.
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Has anyone experienced a situation like this?
My PET showed no new disease and stable breast tumor and bone metastases. My brain MRI, although first said to have found "an interval increase in the right frontal partially enhancing calvarial lesion" which had doubled in size, upon further review, was still the same size it was before.
My mo does both the CEA and CA 15-3 marker tests. I had my blood drawn on Tuesday. The CEA came back 1.8 (well within the normal range of 0-5). My CA 15-3, however, went from 16.8 (where normal range is 0-25) seven weeks ago to 53.6 now.
Since this is the only thing out of wrack, I can't help but wonder if something happened with the test this time. I will be seeing her next week. I know that my mo has told me that she needs both the scans and blood work to determine if the meds I am on are still working. Hopefully she can shed some light on this. Maybe she will suggest repeating the CA 15-3 test again. Or maybe the meds are no longer working and it is time to try something else?
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Hi @going2beatthis,
We're sorry you are going through all this. A confusing situation indeed. So, recent normal PET, no change in MRI (upon further investigation), normal CEA but elevated CA 15-3, if understanding correctly.
Sounds like a repeat of the CA 15-3 could be a good suggestion to pose. Do you have any persisting symptom changes?
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Just the headaches, which actually have not been as often/persistent as before. Oh, and occasionally some loose stools after eating the last week or so. Was just talking with kbl. She said sometimes markers go up before it shows in the scans.
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Has anyone developed either headaches or feeling cold and shivery while taking Verzenio for an extended period (2 1/2 to 3 years)?
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OMG YES! I have chills a lot of the time.
I have only been on V since the beginning of December and I have very weird symptoms. Chills are one of them. I don't have them every day but I just can't get warm! For instance, yesterday I had on lined tights under my jeans and lots of warm layers on top with a thick terry bathrobe over all that and I was still chilled. My hands were freezing too. My house was set at 68 so it wasn't that. I even got up and vacuumed and ran around the house cleaning to try and warm up, but I'd have a hot flash and go right back to feeling chilled. What is this?
Since it isn't every day, I'm wondering if something else causing it. I tend to dehydrate easy, especially if I have D (which I did yesterday). Could it be that?
And no, I don't have any fever or even a slightly elevated temperature.
Thankfully I don't have any headaches (yet). Does tylenol or ibuprofen help with the headaches for you?
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Hi @going2beatthis , Yes, I get severe chills and more so after the Fasoldex & Xgeva injections. The injections have been causing mild constipation in spite of Verzenio. I was wondering if the lowered dose was the reason. I’ve had. To take Colace.
@threetree I’m going to my monthly follow-up with for labs and injections. I want to talk to my Onc that I’m nervous about the lessened dosage, and also think that since he reduced it My injection. SE’s are wore with bone pain in my ribs, headaches, chills and constipatiion and very low mood and withdrawing from everything I usually enjoy. I’m still trying to feel more positive.
@dulcea Wow I’ve been just like you this past month, but my Verzenio was lowered. I think it’s because of the Fasoldex and Xgeva,.. I also have been waking up with night sweats and smoked night gown. I ams. So chilled by this I have to go right to my closet and grab something dry and warm.
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Shanagirl - I'm going to see my oncologist on Thursday for Zometa infusion, and I'm going to ask him about the Faslodex injections. I think that's what is making me so miserable. Many of the same problems that you described. It's getting worse. I have a slight suspicion of the Zometa being the culprit, but becoming more and more convinced that it's the Faslodex. Lowered Verzenio dose seems ok so far.
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Shanagirl - Forgot to mention how interesting your idea of worsening Faslodex side effects after lowered dose of Verzenio is to me. I've wondered about the same thing, but have never heard of or read about this happening before. All sorts of things started changing for me in November and December. I got my first Zometa infusion, the lower dose of Verzenio, and then the much worse side effects. I am also starting to wonder about the possibility of a B vitamin (especially B6) toxicity. Long story about that that I won't detail here, but side effects of that can be similar to those of Faslodex, and I thought I had a similar problem earlier this year. Things improved when I quit the B vitamin thing, but started again a few weeks ago, thinking it was probably no big deal. Will try to ask oncologist about all of this tomorrow at my appointment. Supposed to get the second Zometa infusion then too, but I'm feeling too scared right now, until side effects can be sorted out and pinpointed as to just what is doing what.
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Update: Saw my mo this week. She repeated the CA15-3 and it was within normal range (16.3). Must have been a fluke!
As for my PET, my rad onc did see evidence of activity on the images of the lesion in the right side of my skull (he said there was some uptake) despite the fact that the radiologist who read the scans did not make any mention of it in her report. This, along with the "an interval increase in the right frontal partially enhancing calvarial lesion" that was not reported correctly, really makes one wonder what else might have been reported wrong!
On another issue, does anyone remember who said (at either the Monday or Wednesday Zoom meet-up) that she had developed a rash from the Verzenio after being on it for 4 years and had to go off of it? Thanks.
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Update to All,
I had a good long response to Verzenio, but eventually had to quite d/t side effects. When I was on it I followed this discussion board closely to gather tips and insights on how best to handle the side effects. Besides diarrhea and stomach pain the effects of Verzenio eventually caused B12 deficiency, new food intolerances, and finally thickening of the bowel wall, seen on CT scans, that the radiologist suspected was d/t "drug toxicity". Thankfully these changes repaired with time in part I believe by following the good advice I got here: drink plenty of fluids daily and take a daily probiotic (I drink Kefir). I bring this up now because I've started a new treatment Enhertu that can have significant effects on the gut. Wanting to avoid past problems, I researched further and have found a product that I think will provide some protection. Enterade is a medical food developed by gastroenterologists and oncologists for the management of digestive imbalances caused by cancer treatments and IBS. The product has a website that explains more. I get it from Amazon. A box of 20 - it is on the expensive side. It comes in different flavors sweetened with stevia which I don't care for. However the watermelon flavor has no sweetener and to my taste is neutral. I drink it over ice with a straw - goes down easy. I share this now because I think Enterade might have/would have helped when I was on Verzenio.
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Hi Ladies: I am new to this thread. I am coming on here to ask questions about Verzenio, I am on bone thread also. I started Verzenio in January 2024. Just diagnosed with bone mets Nov 2023. I was originally diagnosed stage 2 breast cancer in 2013 . Did chemo radiation lumpectomy later diep flap contruction, everything great then they found bone mets by accident in November. I am having some lung issues on Verzenio they are monitoring. Is this common with some of you? Also runny nose started ahortly after Verzenio. I thought I was catching cold, I dont have allergies I was wondering is this a side effect?
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Good news Verzenio sisters.
PET scan this morning turned up about 100% resolution of cancer (bone, liver lungs). There is a spot that persists on my pelvis but is smaller than previous PET.
I was surprised about the liver because I have had some liver "feelings" through all of this. Not really pain but a feeling that it is swollen or too big to fit where it is. I thought for sure that there was progression there since I have experienced a few bouts of strong pain that resolved in a few hours. When I asked the doctor about the pain, she thought it was due to the liver healing. I figured she was just trying to make me feel less worried so I didn't really believe her. So, I guess I should believe her.
Too bad the Verzenio and Faslodex and maybe even the Xgeva is giving me side effects. I am sleeping about 9-10 hours a night and I have some pretty bad heartburn that I think is ripping up my esophagus (getting this resolved next!) because I have trouble swallowing and eating a lot. I don't have a great appetite probably due to the heartburn. I have lost 10 pounds but seem to be stable now.
@jen1 I do have some shortness of breath which I never had before so I don't know what that is. I have had some stable ground glass opacity for many year which predates stage IV, but I was still able to hike up 4,000 ft mountains with that persisting. THe PET scan didn't mention anything else about my lungs, but I'm not sure it could diagnose inflammation. Most of the other annoying side effects have resolved or decreased so just give it some time. I'd say two months at least.
@weninwi someone also suggested enterade to me when I complained about nausea. I was wondering if anyone has compared the ingredients to Liquid IV or even Gatorade because the price of Enterade is costly. I think I'll put that on my list to do.
Had to share the good news. I am posting some of this on the liver and bone mets threads too.
Stay strong everyone!
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So very cool, Dulcea! Congratulations!
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thank so much @claireinaz and @AJ
The funny thing is that I keep thinking they made a mistake and mixed up my scan with someone else and I really am not as cancer-free as my report says. Just like when I was first diagnosed, I thought maybe they made a mistake and mixed up my scan with someone else and I really didn't have cancer. Or maybe that isn't funny. What is wrong with me?
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dulcea/ Thank you for the information. Doctor is reducing my Verzenio to 100 per day. Other than lung inflamation I have had no side effects from the Verzenio. Not even diarrhea.I will keep you all posted
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I’ve been on Verzenio for over a year except for a month when I was having lung issues. Started 100 2x a day and feel almost normal with a little tiredness. Got bloodwork on Friday and everything looks good except for my CEA tumor markers. They keep going up. Boo! Still waiting for the CA-15. Scans in two week. I hope this doesn’t mean progression!
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AJ - Wishing you nothing but good luck with the scans! They say the tumor markers are unreliable and not necessarily indicative of anything, so you might be fine there. Congratulations on the rest of your blood work being good!
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augh! My CA-15 is way up too!
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