Abemaciclib Verzenio for Stage IV
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Thanks Luce. I’m being very watchful given that my lungs seem to be prone to issues since the pleural effusion. In this case, I think it is more likely to be a SE of the low hemoglobin as I don’t have a cough. The SOB is primarily when I exert myself. But the reminder is much appreciated. Scan on January 3rd so we shall see.
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whatever you say. My entire pleura is cancerous and I had huge pleural effusions on both sides, by the way. As well as extensive mets in the parenchyma of both lungs. I would never assume low iron was causing my increasing shortness of breath. Interesting perspective, though, and I hope you are right. In my case, my oncologist thinks it’s the cancer worsening in the lungs and pleura again or ILD from Verzenio. I’d need imaging to determine the culprit.
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Sadie, amazing you had no major issues with neutrophils on Ibrance. I struggled with low hemoglobin for a long time which was majorly impacting my quality of life. I did have 1 RBC transfusion a year ago which I resisted as long as possible. It immediately helped in the short-term with shortness of breath, extreme fatigue and foggy head issues but it doesn’t address the underlying issue. I believe treatment was the cause but there is always a chance bone marrow mets were a contributing factor. I got to the point where I needed to get it under control or I was worried I would not be able to tolerate future treatments. I started a combo of low-dose, whole food based vegetarian iron and Ashwaganda and my hemoglobin slowly but surely improved over a few months. I felt that I came out of a long-term fog and the color returned to my face. I no longer would feel out of breath from minimal movement. I didn’t think iron would help with treatment-induced low hemoglobin and was uneasy about taking standard, hemi iron as it can help cancer cells grow. However, I felt a bit better about taking the non-hemi, low dose, vegetarian version. It may be worth looking into an iron supplement and/or Ashwaganda. In addition to helping blood counts, Ashwaganda helps with other treatment side effects and even has anti-cancer properties
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Thanks JFL.
It is odd that neutrophils have not been that much of a problem but it’s my red blood cells that keep tanking. They never came back completely after the Ibrance, hovering in the low normal range (I have my suspicions that my marrow is involved in the cancer as I have extensive bone mets).
I’ll try the Ashwaganda. Like you, I’m concerned that I am going to continue to struggle with treatments if I can’t resolve this issue, particularly as I will likely transition to chemo if this current treatment fails. I hadn’t considered iron supplements as I felt the problem was related to a lack of RBCs, not iron but it’s worth a try. The lack of hemoglobin is making my walks with Sadie a challenge these days. There are quite a few hills near my house - hard to avoid them - and I’m literally gasping when I get to the top. I know I’m not in peak shape but it’s ridiculous. Resting I’m okay other than tired legs/arms.
I appreciate the pointers and hope the Gemzar is beating things back for you.
Pat.
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Due to anemia from V, at my annual internist appointment a couple months ago, she put in an order for an iron panel including ferritin level. I thought it sort of funny because I see my oncologist, who is also a hematologist, every month and he has not been real concerned. Still, it was good to rule that out as a contributing factor.
I don’t get SOB with exertion but my heart pounds as it attempts to perfuse all the tissues and organs with oxygen.
Another curiosity was a recent improvement in hemoglobin after starting CPAP for mild sleep apnea. Will see whether that trend holds up with my next set of labs...
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Hi All. Just a quick question.. have any of you had concerns related to kidney function while on Verzenio? Today's bloodwork shows decreased kidney function (eGFR) and elevated creatinine. It looks like function is declining as numbers started to change about a month ago and have gotten worse.
I'm trying to anticipate where my MO is going to go with this. I still have anemia (RBCs further reduced) and thought that might be the issue that sidelined treatment given my experience with Ibrance but am now wondering if kidney function is going to be a bigger issue.
Any info would be appreciated!
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Hi, and thank you for the good information here! I was happy to find this thread. I am new to the MBC diagnoses. It was discovered that I have four tumors, all in the bones, in early December. I had stage 2 IDC diagnosed in February of 2018 so this new development is a shock. My doctor is putting me on Verzenio as a first line treatment, which I understand is not the norm, but I was hospitalized with neutropenic fevers when I was on the TC regimen in 2018 and she was afraid the Ibrance would have a similar effect, so we are starting with Verzenio. I am waiting for it to come in the mail but just had the Faslodex and Xgeva shots this week. I appreciate how so many of you have shared what to expect as I am still reeling from all the info I have gotten from my oncologist team. It's just helpful to know there are others out there struggling with this as I am and understand what it's like. It's all a bit overwhelming at this point.
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Hi Emac, I’m sorry you find yourself here but know that you will find an incredibly caring group who will support you as you start this treatment. This website has been a godsend as I navigated several treatments since my stage IV diagnosis three years ago.
Well friends, I’m probably experiencing the pre-appointment jitters but it may be an interesting discussion with my MO. As I mentioned in my earlier post, my last blood tests showed some potential problems with my kidney function. I noticed it has been dropping in the last few blood tests. What I didn’t immediately notice is that it has shown a marked decline since October when I started Verzenio.
I hadn’t realized that they don’t test kidney function as part of the recommended protocol. In my case it was a bit of a fluke that it was measured. They started requiring kidney function testing a few months prior to CT scans for me (I probably hit a magic number) in January of this year and, as a result of the discovery of mets to the base of my skull, I had a CT order from both my MO and my RO. It was then tested as part of the routine panel prior to my MO appointment. This led to an interesting timeline.
October 10th started Verzenio, October 16th kidney function test - some decline in function but still well within normal, November 7th kidney function test shows further decline - barely within normal (but low for my age and general health), January 8th kidney function now well below normal showing moderate impairment.
I will, of course, flag this for my MO. In reading up on the impacts of treatment on kidney function it’s clear that there are several drugs that can cause impairment including the CT contrast (which is why they test) and Pamidronate which I have been on for some time due to my extensive bone mets. However, I am finding the timing a bit too coincidental and kidney issues are a reported side effect in a limited number of cases with Verzenio. Lucky me!
All a bit concerning. Taking my mind off the worries about my CT scan! LOL.
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SS, when are your scans? Wishing you all the best and no more decline in the kidneys.
I started my V mid December, only in the last few days have I had bowel issues with "D", but I have also been sick. Just got my Faslodex and will get that injection on Thursday when I have my MO Appt. and will do labs a day or two before. I can ignore cancer when I don't have to worry about appts., labs or scans, but when that time comes....oh boy, scares the ba jee jee bees out of me!
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Hello Girls,
Just wanted to say had my first scan since been on Abemaciclib ( 5 months ago) and my Liver mets have shrunk. I’m on the lowest dose ( 50mg twice a day) as I was unable to tolerate any higher dose. I’m also on monthly Faslodex injections. Wanted to share the good news as I know it’s a hard drug to be on. It does work even at a reduced dose.
Xx
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Wow Mermaid, that is awesome! I'm on 100 2x a day, just finishing up my first month, no SE's as of yet. MO and labs this coming week.
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Great news Mermaid,
I had scans on January 3rd after being on the drug since the beginning of October. Not sure if that will be enough time to see results. I see my MO tomorrow so will have a better idea then. (I dropped the dose twice from 200 mg twice a day to 150 mg twice a day then 200 mg once a day.)
As I mentioned above, my kidney numbers are looking like something is up. Or sure if a dose reduction will reduce that or limit the impact. Lots to discuss with my MO!
Thanks for sharing the good news.
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For those of you who have been on the Verzenio a while, when did you notice side effects? I just received it in the mail and have been taking it only 3 days so far. I figured it's too early to know how I'm going to react. So far so good though.
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Well ladies, I have a month under my belt, only some mild "D", but I was also sick. Just got the Faslodex, after a 7 week fight, and got those injections yesterday. Needlees to say, I have a very sore heiny! First month on V, my TM's dropped for the first time in a year!
Finally something good! My Tumor Markers are DOWN! No where near normal, but it's better than them going up!
My CA 15-3 is 718, down from 863...normal is less than 30.
My CA 27.29 is 769, down from 851..normal is less than 37.
My CEA is 19.7, down from 21.6, normal is less than 3.4.A year ago, my CA 15-3 was 255, CA 27.29 was 265 and the CEA was 10.0. All still way off from normal, but you can see how big of a jump I've had in the last year. So I am very pleased with the drop!
Emac, as written above, nothing much for me to report on SE's.
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Hi Emac,
I found that it took about a week to start experience the bulk of the side effects. Mine started with taste issues and then I ended up with severe nausea on the full 200 mg x 2 a day dose. I had diarrhea but it was never as big of an issue (generally one big blow out every couple of day with cramps). I found that the drug has really impacted my mucous membranes - bleeding/painful sinuses and mouth sores. Dose reductions took care of the nausea - still have the mucous membrane issues but my sense of taste has come back to almost normal. Still occasional cramping but no diarrhea for a couple of weeks now.
I'm at the three month mark.Unlike Goldie, my tumor markers have always bee somewhat useless (I've only ever had the CA 15-3 tested and, even at its worst it only came back at slightly above normal) but I'm pleased to report that my scans just came back stable. As my MO put it, "It's doing something".
As I mentioned above, in addition to lower RBCs and hemoglobin, my kidney function numbers are a bit our to whack (elevated creatinine and reduced eGFR). We're going to monitor that for the next few months. Hopefully it's nothing but I'm suspicious that there is some loss of kidney function. From what I understand, it is common to have elevated creatinine but it usually spikes within the first month and stabilizes. In my case it has continued to rise. We'll see.
Hope that things remain relatively problem free for you.
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SS, I hope all the issues you are having will resolve in time. My MO asked me if I wanted to up my dose. I said not at this time, we are still young in this treatment, and I just got my first Fasolodex injection. Do you get those as well? Did you start on 200 mg 2x a day from the start?
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Sadie, I’m so happy to hear of your stable scans after 3 months on Verzenio! That’s wonderful!
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Thanks Divine. How are you holding up? I think of you often. There is no doubt this is a hard ass drug so pretty happy to think that it is doing the trick. Hope you see similar results!
Goldie, yes I was at 200 mg twice a day to start. I was never quite sure why my MO started me at that level given that I am on Faslodex still. The only thing I can imagine is that he thought Faslodex was going to fail soon since that dose of Verzenio is recommended as a sole treatment. But I feel I have landed in an okay place where I am now.
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goldie, i started on 200 mg monotherapy and had to reduce to 150 due to grade 4 diarrhea. a year later, my TMs started trending up. instead of switching therapies, i asked my oncologist to up the dose to 200mg again. that was a year ago; i am still on verzenio. could be a fluke, of course. but staying on the lower dose for now (if it's working) may give you some wiggle room later.
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Thank you SS! So far so good nine days in. The nausea you experienced I am definitely fighting also. It comes and goes but that seems to be the worst of it so far and I am grateful for that. I mostly just have this all over ache towards the late afternoon that progresses as I get into the evening. It's been hard to sleep. I do really well in the mornings. I am on the 150mg dose.
I just started PT for my hip post-op and am hoping that getting into a regular routine of light exercise will help also. I have been sleeping with a heating pad at night and that helps. I'm finding little things that feel good, like hot tea and heating pads just give me a little relief and make it seem doable again.
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First labs after a month on V. For the last year my TM's have been rising, and a lot the last 6 months.
My CA 15-3 is 718, down from 863...normal is less than 30. Drop of 145
My CA 27.29 is 769, down from 851..normal is less than 37. Drop of 82
My CEA is 19.7, down from 21.6, normal is less than 3.4 Drop of 1.9Woo hoo….I'LL TAKE IT!
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Oh Goldie, gosh girl, I am ssoooooo happy for you. I'm praying they keep dropping.
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Started V yesterday. I’m nervous about the diarrhea, I’ve had some pretty bad diarrhea after a different chemo and again after radiation nicked a bowel. It was pretty horrific and the thought of going through that again sends me into the shakes!!
I am supposed to be leaving next Wednesday to Kansas to see my son and grandkids and don’t know if I should go. If I’m going to get diarrhea that’s the time it would be kicking in. How many of you were able to control the onset with meds when it started
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Thanks Snookums! I hope so too! Are you on Verzenio? Or still doing X?
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Goldie, great to hear the Verzenio seems to be agreeing with you!
Susan, what level of comfort will you have at your son’s place in Kansas? Like your own room and maybe the spare bathroom? Or will you be in the middle of many activities and constantly on the go? You may need some occasional time out to rest and assess how you’re feeling, and if diarrhea presents any issues, you may want a bit of privacy. I think Imodium works really well. Did you use it with your previous diarrhea issues? My pharmacist told me to start off taking two tablets at the first sign of loose stools, and then one every four hours as needed. If it were me and I’d been really looking forward to the trip before I knew I’d be on Verzenio,, I would make the effort to go, especially if you’ll be able to,have some down time while you’re there.. Then again, this is a true example of listening to what your gut tells you!
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Susan R-- I am about a week and a half into the Verzenio and just last night was the only time I ever had "the runs." I am partially blaming the pepperoni pizza I ate for dinner...it was good, but so not worth it. The good news is it resolved this morning with only a sour stomach feeling remaining. My biggest issue with Verzenio so far has been a decreased appetite and some intermittent nausea. I have Imodium here if needed but thus far I haven't needed it. I hope you are able to go on your trip. Best wishes to you. I am planning a trip to Arizona at the end of February to see my extended family and get out of this PNW rain. I am hoping for the best and packing for the worst. LOL.
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Goldie No to Verzenio, I just saw that you had posted and came over here to see how you're doing. So glad that I did too. Such great news
I'm still on zeloda but I don't know for how much longer. 3 mo scan showed progression in bone mets but a slight decrease in breast tumor. Onc wanted to take me off it right then and there. I said I don't want to run through treatments can I stay on it a bit longer? He said fine, 2mos and then scan. If zeloda fails then he want Havalin. I told him I have no intention of doing chemo for the rest of my life. My 5 mos of taxel was difficult. So? It's up in the air, of course.
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Snooky, because I have no symptoms, I only do scans about once a year. My TM's and scans always showed progression, but I stayed on Xeloda for 5 years. Remember, it's my ship! And I too didn't want to run through all my options quickly. I will be hitting 6 years of stage IV very soon.
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Thanks ladies for your input on My fears about starting this med and my trip to Kansas this week! The diarrhea started after my 5th dose and has been manageable with Imodium. I’m thankful that my husband I have the guest room in the basement with our own bathroom! We’ll split the trip up over 2 days since it’s just over 500 miles.
Does the diarrhea come and go or does it just dissipate until it’s no longer an issue? I feel like I can manage and have managed so many SE over my 11 years of treatment for Stage IV but this diarrhea stuff really puts me over the edge!!
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Hi Susan,
I’m not sure any of us can provide concrete answers. It seems to be very individual. At its worst, I only every had diarrhea for what I would describe as one episode per day. That may be up for debate as I would experience severe stomach cramping and then go back and forth to the bathroom over an hour or so until the “big blow”. Once that was done I was fine until the next day or several days. It was never 100% predictable. Even now I still have the cramping - tonight for instance, a few gut wrenching twinges but I don’t think it will amount to anything.
For me the diarrhea was always manageable. It was the unrelenting nausea that I couldn’t handle in combination with the mouth issues. Food tasted terrible and when I forced myself to eat or drink I didn’t think it would stay down. That was a recipe for disaster when, with the loss of fluid due to the diarrhea, it was paramount that I stay hydrated. But, ultimately, a dose reduction was the magic bullet. I’m doing well now, not without treatment related issues but managing and working full time.
I hope things settle down for you. The literature indicates the diarrhea is at its worst during the first month and then settles out. I know others on this thread would agree with only the occasional issue.
Wishing you all the best.
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