Abemaciclib Verzenio for Stage IV
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Rene- the Metamucil has made a HUGE difference. Not 100% normal but so much closer!! I am even feeling better overall - more energy even. The GI issues had me feeling far worse than I realized. All those trips to the bathroom and the terrible watery diarrhea just drained me. I have only taken an Imodium one time since I started the Metamucil. That’s incredible! I still feel like my body is adjusting but for the better. Now I pray I can put back on a few pounds. Concerns me that I am eating well but weight still now slowly drifting lower. No scan for another month...🙏🙏🙏. You should put a note in the thread for advice to people taking a CDK inhibitor. Thank you for bringing it to the attention here. I do think I am going to find Metamucil without the aspartame....
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Thanks for the update H&G. I had intended to reach out to see how it was going. Things are getting more "frequent" with me so I may be the next on the Metamucil train!
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Hi H&G, I'm so glad the Metamucil is helping you. I'm not kidding when I tell you that is has made such a big difference for me. I was so discouraged when I had the D all the time and felt like i could not lead a normal life. It was so depressing to think this was how I was going to have to live indefinitely. My digestive system is not 100% back to normal either, but it's about 90% there and I am able to live a semi normal life now without the fear that every time I leave the house I might have an accident. I really wish I could get everyone who's on Verzenio to at least give it a try. Thanks so much for updating me and I'm glad you're feeling better overall.
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I’ve been on Verzenio a month now. The nausea is better and I’m only taking an occasional Zofran. The diarrhea is better and I’m taking just 1 Imodium each time I take a Verzenio (150 mg 2xday). I’ve had colitis for about 20 years and haven’t been in remission with that for about 5 years, so things actually seem a bit better with Verzenio. I know as my white cell counts drop, my colitis gets better
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I have had a horrible time with my nails also. I have two on my right hand that split and peeled away from the keratin under lining. I have been using OPI Nail Envy and it's great but I will have to try the hard as hoof also. I am finding I have to keep them polished to prevent further peeling and cracking. I was never really into polished nails but I keep a light clear coat on them weekly now to hold them together. They are so weak I can't even open a can with a tab or try to scratch off a label without them peeling up. I haven't seen this side effect posted anywhere either so it's helpful to know I'm not the only one.
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if the hard aS hoof doesn’t work, I heard the burts bees cuticle repair is really good. I can’t put any polish on my nails. Makes them worse
. It did take mine a couple months of cracking, splitting, peeling, and filing back whenusing the cream to finally get them to “normal”....weak but normal 0 -
Thanks. I just ordered some of the Hard as Hoof on Amazon. The OPI nail envy is the only polish I can use. I agree, typical polish makes them worse. It's funny, before cancer I was never a makeup/polish kind of person. I did a tinted moisturizer and some long wearing lipstick and called it good. If I wanted to feel fancy I might try some mascara or eyeliner for "dressy" events. I've now been YouTube educated on the finer points of make up. I still do a tinted face cream and lipstick but now I'm drawing in eyebrows on and doing an eyeliner to hide the fact that my brows and eyelashes are still mostly missing. Since COVID I have learned to do my eyes a little better because I got sick of everyone asking if I felt okay.
I try not to look back because all the changes between who I was and who I am pre and post cancer can be overwhelming. I feel this was a positive change from all that though. It has forced me to invest a little more time in my morning routine. When I have to sit and put some time into my nails or appearance I feel a little bit more confident in myself again. So that's been a good thing.
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Ladies, you are all WONDERFUL. My last scans (June) showed progression and my onc suggested we stay on the Faslodex for 3 more months then scan again (next week) and then, if any more progression she wants to switch me to Verzenio. I have not decided if I will take it or just let nature take its course, but you have all provided me so much valuable information about this treatment.
Thank you so much, and you are all in my thoughts and prayers.
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hi Terri-c - always a personal decision and YOUR decision on further treatment, but I was wondering, has faslodex been your only treatment so far? And it gave you four years? There are so many other treatments possible, I hope you carefully consider....
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I've been on Faslodex for over 6 years, its my 2nd line treatment. Its always been about having a good quality of life, not so much quantity for me. I've researched Ibrance, Verzenio and Kisquali and the side effects are somewhat daunting. I have some other medical issues that will likely rule out Ibrance and Kisquali for me. So, we'll see where we are after scans next week and I will make the decision about Verzenio then, if I have to.
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6 years! Wow. Yes there are SEs but not everyone gets them....or not as badly....and you can dose reduce keeping efficacy. I am sure you researched extensively.I understand quality vs quantity and your decision for sure. Best of luck!!!
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Hi everyone: just wanted to reiterate how helpful this site is. Recents posts re: Metamucil and nail fragility have been very helpful. I'm in Canada so I am going to try Gena Healthy Hoof and will let you know if it helps (Hard as Hoofs is really expensive here). I also am putting more makeup than usual. I think the Taxol treatment made my face look darker in places - perhaps Verzenio also? As also missing eyebrows - and am challenged by not placing them too high and also just how one eyebrow seems a bit higher than the other. Well I have always been just at the right place at the right time. I had first breast cancer about 30 years and am keeping pace with all the new discoveries. And who would have thought that makeup influencers would come just in time for me to deal with loss of eyebrows and learning to look a bit more lively than my rather sallow looking state. My last MRI they found a spot in epidural space thoracic 7 adjacent to bone metastasis. I had no idea that cancer could spread in all these different spots. I am going to have spine MRI to confirm.
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Hi nnc! I really like your attitude. 1985 and then in 2012? Wow. It seems that you are doing well though so that's good news. Sorry to hear they found another spot, but good luck with your MRI and maybe it's not what they think it is. I am guessing they found it by CT? I find this group to be really open and honest and will talk about anything....we have to as we are sharing this experience and the SEs, so we get it more than anyone else. At first I was hesitant about blogging, but since this lockdown and I have no one else I know in this unfortunate circumstance, it really helps to have the support and not feel so isolated.
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Hi nnc
You and I have been at this for awhile but you have me beat. And we are both from Canada. Did you have any trouble accessing Verzenio? In my case I had to push as it is not covered here. Thankfully Lily is providing it to me under their compassionate access program. My extended health turned me down twice!
This is a great site and very helpful as we navigate a treatment that is still not that commonly prescribed (most do Ibrance but my blood couldn’t tolerate it - major anemia). Don’t hesitate to ask anything here.
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Anybody develop kidney problems on Verzenio?
My ankles & feet have been swelling some, and I've woken up with swollen eyelids a couple mornings. I've had regular ocular migraines since first of June. And my tinnitus seems a bit worse. I googled all of that, and kidney function seems to be a common theme for each of these things.
So on a whim I checked my lab reports for GFR and sure enough it has been below 60 for the past four months which is evidently the benchmark for kidney disease. It was 51 a couple weeks ago.
Anybody have any insight on this? New territory for me. Because 2020 says what I need is one more fun side effect. Ha.
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Hi Lulubee,
My MO and I were monitoring creatinine for awhile as there seemed to be something going on. Verzenio is known to cause elevated creatinine but typically it spikes and then levels off at a higher level. Mine kept going up and up (and since they are related measures, the GFR went down). Ultimately we reduced dose which resolved the problem. Having said that, your numbers don’t seem that low so perhaps not worrisome but you might want to flip a note to your MO given the swollen ankles.
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To Hope and Gratitude - I might be allergic to iodine - so instead of CT scans, I have MRI's to brachial plexus as metastasis started in infraclavicular lymph node. So that is how they found the suspicious spot in epidural space.
To Sadieservant - RAMQ Quebec prescription plan accepted my oncologist request for coverage and the small extra amount (premium) is covered by Lily - so very fortunate.
Interesting note: my pharmacist said that neutrophils bounce back quickly once you stop the Verzenio unlike chemotherapy - so that is good to know given current COVID situation that my immune system is not permanently compromised.
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lulubee- when I was on the 150 dose, my EGFR also decreased to levels similar to yours.- no swelling though. My MO was not concerned as she said it wasn’t a true test of kidney function. And I had no other signs. I am on 100 mg now and EGFR back at normal levels. I would definitely have your MO check out the swelling.
I had some rise in creatinine as Sadiesservant mentioned. Mine leveled off and has not continued to rise.
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Lulubee and Sadieservant - at my appt yesterday the pharmacist said the creatinine will rise, but it's not overly concerning since they don't think kidney function is actually impaired. It's just that the creatinine is sticking around longer.....hopefully that's true!
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Hi Arissasmom.
The initial creatinine increase is reported so, yes, under those circumstances there is no concern. However, in my case, despite some early dose reductions due to manage side effects, my creatinine kept going up. As a result, my GFR was dropping quite significantly. I went from a GFR in the 80s to a low of 46 with creatinine going from 70 to 115 over a three month period. We monitored for a month or so and then decided to drop the dose further which immediately brought the creatinine level down.
While I recognize it may not be a true measure of kidney function, I do tend to keep an eye on those numbers as we can be excluded from many treatments if we issues with kidney function. I don't want any treatments off the table at this point.
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My oncologist also said that my concern with verzenio a rise in creatinine levels isn't related to kidney function - my husband is on dialysis so that would just about tip us over on the what we can tolerate situation, although I guess you deal with what you are served. I watch my tests very carefully as well. It's important to be mindful of what is happening with illness and treatment and side effects.
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Thanks, ladies, for all your responses about GFR and creatinine. You have put my mind a bit more at ease about my kidneys for the time being, though I agree I still need to keep an eye on the swelling.
What an odd life we all live, having to stay vigilant about all our lab values and being the ultimate watchdogs for all our organ systems. Our bodies are going through so much for us.
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I kidding Lulubee! I’m constantly trying to figure out what is age, what is side effects and what is cancer. If cancer doesn’t get me I may lose my marbles from trying to figure it all out
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I’ve been on Verzenio for a month and my eGFR has dropped to 49. My oncologist wasn’t too concerned and told me to just drink more water and that we need to keep an eye on it
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Have any of you had some time off Verzenio? How did that go? Did your blood counts and side effects improve? I've been feeling really worn out and sick the past three weeks. (Thought maybe I'd caught something despite rigorous social distancing.) Last Thursday my neutrophils were too low, so no Verzenio for a week until recheck. The first this has happened in 25 months.(I do think side effects have been cumulative for me.) Hoping to stay on it, because not many options left.
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Interesting that you should ask this today, SchnauzerMom, because this morning I was thinking about asking the same question.
I decided to skip both doses yesterday and just take a day off, which I never ever do, because on Friday I had one of those awful days with intense gut pain and a big lower GI clear-out with then a weird episode of random vomiting. I mean, things are never totally normal with my gut but some days it's just like I get hit with a shock & awe attack with no warning. The vomiting part has only happened to me about 3 times in 18 months. It gets my attention. Maybe it's just totally random but it makes me wonder-- what's going on in my gut today, what's different about today, have I just hit an unusual level of toxicity today for some reason?
Sometimes I wonder if this stuff has actually killed my gut.
So I just couldn't bring myself to take it yesterday after that day of pain, vomiting, and superpooping. And naturally I wonder if skipping a day or two matters. Is it awful to do that now and then? It's just that there are NO BREAKS on Verzenio, ever. I know that's on purpose; it's the way the drug works. I get it. But sometimes I just want a break so badly.
And then again I think a break might be the worse thing ever psychologically because what if I took a weeklong break and then felt TONS better and felt so happy and carefree and had energy and no gut pain... then what? It would just make it even harder to go back on schedule. Not good.
So I took it this morning and I will take it tonight. As we do.
Treatment is hard work, both physically and mentally.
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In my opinion, it's all about QOL. And you wish to skip a day, it's ok. If you wish to skip a few days, it's ok. I haven't had any in 2 days, BM's are normal!!!!! I rarely get the vomits. My reasons would be the rate that my hair is falling out and the "D". I'm also going to dose reduce, from 150-100. I'm going to MI to visit my kids and siblings the end of Sept for 10 days. I'm considering NOT taking anything for those 10 days that I'm there. I feel like it's my body, and I can do what I want. And my MO is always ok with that.
I've said it before and I'll say it again, my ONLY complaints are from SE's and NOT cancer itself.
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Hi All,
My MO is never concerned about a treatment break with Verzenio. When I first started at 200 mg bid, the side effects were so awful that my MO said stop for 2 weeks and then start at a lower dose IF I was feeling better. Judging by how long it took before the nausea and taste issues subsided, I would say it stays in our system for awhile so a few doses will have little impact. And keep in mind, most of us are layering it on top of Faslodex which is likely doing its job of keeping things controlled. Just two weeks ago I was discussing the fact that my GI issues have seriously ramped up over the last few months with my MO. He immediately said, what do you want to do? Take a couple of weeks break? I said no as I’m managing but clearly he has no concerns.
Interestingly, I took part in a marketing study a couple of years ago that turned out to be for Verzenio. One of the things they were touting was that you “could take it everyday”! I did point out that for MBCers this wasn’t really a selling feature. I really look forward to breaks when I am on chemo and when I was on Ibrance as it helped my body to recover and I could figure out timing with SEs. With Verzenio there is no rhyme or reason to many of the issues and I feel that I just get more beaten up the longer I’m on it. Not bad enough to throw in the towel but.... would love to know if the taking it every day thing is because you can or because you need to. I suspect the former
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"would love to know if the taking it every day thing is because you can or because you need to. I suspect the former"
Very interesting question, Sadiesservant.
When my last treatment failed, my MO said we should go to Verzenio specifically because there's no break. She apparently suspected my heavily pre-treated disease is becoming more drug resistant and that it would better for me to hit it every day rather than giving it off-weeks.
Who knows? That's the catch.
She has also seemed more hesitant to take me off Verzenio. I sense that she's under the impression that Piqray is harder to tolerate. It may also be that I don't have a ton of TX options left? Now there's a fun thought.
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Interesting. Add in the issue of access to these drugs. Here in Canada it’s not that easy. I probably could have held off on Verzenio from a treatment perspective but felt strongly that it was now or never.
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