Abemaciclib Verzenio for Stage IV
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Saw med/onc yesterday. Going to try lower dose Verzenio (100mg twice a day). She suggested to try Ibrance since it does not have GI side effects, but I was reluctant, mostly because I just didn’t want to change meds and I am concerned about neutopenia and thrombocytopenia. I appreciate that Verzenio crosses the blood brain barrier. I asked if a lower dose of Verzenio is less effective and she said it was not. PET scan next week, so fingers crossed for no surprises.
Good luck Chats...sounds like it’s time for a change
Pajim - Did your treatment plan change
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Well, I got my TM's today. Not good. CA 27 right back up to 740. Alk Phos at 91. Ast at 63, well above the high normal but Alt is still low at 19.9 but higher than last test.
I did read that Verzenio can cause liver damage. I am so disappointed. I was hoping for at least stable or small increase but this is a big jump from 417 to 740. Pretty bummed right now.
My WBC is 2.7 I know that the granules were low at 1.7 and the onc wants to recheck this Wednesday to see if my WBC has come up so that I can start Xeloda.
As a side issue I have had some really weird and very bad muscle and joint pain all over my body. I have no idea what this all means. So scared that the beast is spreading.
Chats
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chats, if you recall....cancer markers do not offer a very reliable view of what could be happening...of course we all rather see low numbers. Hopefully xeloda will smack them right down.
In my case the markers have stayed the same after 6 months on X, BUT I feel better than ever, I can accomplish a lot more every day and that makes me very happy....
After x initially brought my normal liver markers all the way up, I disobeyed my MO and started taking NAC and other antioxidants and anti inflammatories that brought them back to normal and so far so good...according to my last pet scan...I treat random aches and pains with magnesium oil massaged into the affected areas.
The x is fast acting, it goes around killing fast dividing cells, good and bad, for only two hours after you take it....so I figured for myself that by lunch time it's safe to start repairing the damage that it wreaks on my precious organs...I figured I don't have much to lose since sooner or later it will stop working, and much to gain by protecting what's still working, but it's a gamble
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i would strongly advise against pausing verzenio due to side effects. reduce dose instead. verzenio causes false senesense in cancer cells (true senescence is permanent), meaning cells rapidly cyle again once the drug is withdrawn. and its half life is no more than 14 hours (it may be as short as 7; used to know exactly how long but can't be bothered to look it up now). this has been shown in studies and in my personal experience when pausing it for three days when i was fasting. after those three days, my cancer markers went up, and they have been merely stable, never dropping again since. i think pausing verzenio is risky. i also think continuous dosing is what gives verzenio the edge over other cdk4/6 inhibitors. i think pausing helps cancer cells rebound and adapt.
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Miaomix,
Well my liver markers have been pretty good except now I am seeing a rise in the AST. I read that one of the side effects of V is liver damage. So who knows. I do have a spot on a part of my liver that according to the last scan is mets. I have read that X does kill the liver buggers so here's hoping.
Luce,
My numbers were rising prior to the break . It was my incessant diarrhea that the onc thought I should break for. According to the V website, it is sometimes necessary to break when the toxicity is too much and to resume at a lower dose.
Faslodex by itself did nothing but make the TMs rise fast. When V was added I got a good response for 5 months and then the numbers started to creep up. So the combo did work for a while but starting in October the numbers rose and I didn't break until December.
At this point I think moving on to X is the best option. I have asked and am getting the Foundation 1 test. It will be interesting to see what it has to report.
I still can't get a definitive answer regarding TM's v. scans. I have searched. My last scan on November 21 showed no change but the TMs on December 5 showed a rise from the previous TM from 330 to 417.
My Pollyanna self would like to believe that the scans tell the true story and the TMs do not. But when my TMs rose before the scan showed progression. The scary thing is that if this is progression it has happened very quickly. Do I have an aggressive cancer now? as opposed to the "indolent" one I had when I was first diagnosed in 2011?
Not a happy camper right now.
Chats
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yes, my advice to not pause is not in the insert. i am reporting my gut feeling, experience, and further research about that.also, early on (when side effects seem to be strongest) rebound and adaptation and resistance may still be lesser dangers, so pausing may be less risky.
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I’m thrilled to report NEAD after my PET scan today
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Yay for chemokaze's no evidence of active disease! I'm a few months behind you on a similar regimen (with Verzenio at 100mg twice a day due to GI effects). With the dose decrease and an additional pause in therapy while having radiation, I'm thinking my first follow-up PET scan might not be until early March.
I started with the 27.29 tumor marker which was at 120 upon diagnosis then 125 a couple weeks later. The lab now reports CA 15-3 which is apparently another way of measuring the same thing. It's been stable...
My RO, a research oriented MD PhD but also very caring, called colleagues at other institutions when deciding whether or not to have me hold the abemaciclib while she zapped me over Thanksgiving. With a delayed start to the 5 treatments, my break stretched into 10 days. There is a study going on with Ibrance to try and resolve the question but they get a prescribed week off anyway. Luce has an interesting perspective on the issue.
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hello ladies!
Hope you all had a wonderful Christmas and a happy New Years! I wanted to update you on the most recent news. Unfortunately I will be leaving Verzenio and moving on .. I don’t have a ton of treatment options I think and ready wished Verzenio would last longer and be effective for some double digits months but it is what it is.
After my Y90 my scans showed bone cancer more active but the report never stated exactly how much. Against a couple of MO’s advice I decided to stick with Verzenio a little longer on the basis that I haven’t been taking it regularly during the month of recovery from Y90.
I did take it religiously for two months 150 at night and 100 in the am. The first month the tumor markers stayed stable and I took it as a good sign. I had my scans right before Christmas and it came back showing again « more bone activity » but also a few new liver mets!!!! In just one short month and my tumor markers rose by 30 points. I’m so bummed right now because that means that all the Y90 suffering was for nothing and may have to go through all this again if my next treatment didn’t work.
I’m trying Lynparza next even thiugh I only have a somatic mutation not a genetic one. I was also offered Afinitor but the comments on that thread have been very discouraging. I also have Halaven as an option but aside from trying to avoid IV chemos at the moment I’m trying to save it when liver mets are a lot more because then I’ll need something that can act fast.
Hopefully I made the right choice and can live with the new side effects.
Good luck to you all .. hopefully you are luckier than I am
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I would be interested to hear from anyone taking 200 mg Verzenio as mono therapy. How has that been for you? Side effects? How are you feeling?
I started with 200 mg in July, but after 2 weeks was dropped to 150 because of neutropenia. I remember having an infection and being very tired (lots of diarrhea) on the higher dose. My tumor markers have been dropping, and blood work has been good, so my oncologist "promoted" me back to 200 mg last week. I've had a UTI this week, and just feel weak and crummy. PET scan next Wednesday. Just hoping to get some energy back.
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I started on 200mg a year ago but had grade-4 diarrhea every day for weeks. Went down to 150; watery diarrhea lessened to a few times a week. Went up to 200 again a number of months ago but just didn’t feel well on it, so have been on 150 ever since. I don’t think anyone knows yet if a higher dose is more effective; 200 is merely the highest dose generally tolerable in trials. I’d go with the highest dose tolerable to you
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I'm now managing the diarrhea with FiberCon, available generically as calcium polycarbophil, taking 2 tablets daily at noon so it doesn't interfere with Verzenio. Loperamide made me bloated and contributed to terrible intestinal cramps when things tried to start moving.
Bowels are still somewhat unpredictable but at least I don't progress to runny watery stool every time- it stays formed although a bit loose. I may become brave enough to go back up to 150mg twice a day. My tumor markers dropped into double digits so something seems to be working...
Here's hoping Nouzay gets a nice long run on her next treatment
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Well, I'm beginning to think I shouldn't have taken Verzenio at all. It sort of worked until it didn't. Five months was all I got. But the damage it left in its wake is what I am dealing with now.
I am off everything as of December 22. I am in awful joint and muscle pain constantly. My red blood cells have tanked so low that the onc is considering a transfusion.
Due to the low RBC I am having shortness of breath and heart beating hard. I thought it has gotten better but my last blood work on last Wednesday showed they are below the low threhhold.
Low RBC is one of the side effects of Verzenio. There is also danger of blood clots and heart attack. I swear to God I think the drugs are worse than the cancer.
When I was on Letrozole and Faslodex I felt pretty good. They didn't work however. So it seems that with nothing at all working I was not in pain and feeling pretty good.
Onc won't start me on anything until the RBC or actually hemoglobin rises. He is also waiting for the Foundation One test results.
Why am I doing any of this....
Chats
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By all means, get the transfusion! I was given 7 units after my big surgery last summer. You need to start feeling better which is nearly impossible when you don't have enough blood cells bringing oxygen to all your organs.
Also, don't second guess yourself about taking a med. All we can do is make the best decision we can with the information we have at that time. You couldn't predict which side effects would hit. (Although, as a retired pharmacist, I am forced to agree that there are instances when the drugs are worse than the disease)
The reason you are doing this is so you can live. I don't know you well enough from these boards/postings so please don't take this the wrong way but perhaps you might want to consider antidepressant therapy, at least until you get past this low point...
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Thanks vlnrph! Just started Verz 100mg BID...will let y’all know how it goes....do you favor the fibercon over Metamucil? For now, I am not taking any fiber or antidiarrhea pills so I can truly see how the reduced Verzenio dose is going to work for me.... so far, since 7/2018, just leukopenia w/o neutopenia....and the ever so popular GI side effects....the latter is why I am trying the dose reduction
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Hang in there, Chats.....soon you and the MD will come up with another plan that will be better. It does sound like you need a “refill". I think usually a transfusion is needed for Hgb less than 7
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I've been on a clinical trial taking 150 mg of Verzinio in the morning and evening and a bi weekly immunotherapy infusion LY3300054 since March 2018. Other than diarrhea, I have not had any major issues and have had several really good scans showing stable mets in bone and liver. Over the last few weeks, I have had on and off severe pain in my upper abdomen area. My onc told me to stop the V for 4 days then start it again, at 150 mg dose. I felt a lot better off the medicine and started again yesterday and I am already noticing the pain starting to come back. It is so bad at times that I only slept 2 hours last night. I am worried about reducing the dose as I have had good success on the V. Has anyone else had abdominal pain with Verzinio and was reducing the dose recommended? If the pain continues to get worse, reducing the dose is the next step.
I am also using benefiber every day. I have not had diarrhea in quite some time, but am starting to have issues with constipation. Any advice would be much appreciated.
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chats, I know how you feel....I have reached your same conclusions couple times already because of irreparable damage caused by the Tx instead of cancer....
BUT this is the only game in town, and we have to play it the best way we can.
Like many on this board, you could hit the jack pot with the next TX.
It's a crap shoot and none of us nor our doctors know why a treatment works in one patient and not in another. The answer is obvious but too cruel to duel on....so it's important to be aware and in denial at the same time.
I personally find the dosages to be the real problem. So I try to protect my remaining health from the ravages of the medications by reducing the amount, and taking natural supplements which are not recommended by our doctors. But since they're no clinical trials for them to base their opinions on, I take my chances and try to do everything I can to protect myself.
Please stay positive....what happened to you has happened to all of us....it's par for the course....but things can also change on a dime, and that's what I wish for you
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WorkingMom,
Huzzah!! How wonderful and exciting that immunotherapy (IO) is working for ER-positive breast cancer!! Can you post a link to the trial you are on? For however long it works, studies have shown an overall survival benefit to immunotherapy not only because of the time you get while on treatment, but also because it makes you respond better to all he subsequent procedures and drugs you will end up having, owing to your stronger immune system. So you are getting the benefit now, but also for future treatments.
Clearly, you are getting both drugs, and interesting that Verzenio is the bigger problem. The issue they are testing is that CDK4,6 inhibitors have been reported to make breast cancer sensitive to the IO, so it would not work if you dropped the Verzenio part. Replacing it with Ibrance might resolve your problems, but obviously that is not an option in the trial. Please keep posting, this is valuable information!
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For working mom, my usual pharmacist advice to customers asking about relief was three-fold: consume sufficient fiber/drink plenty of fluids/exercise daily then consider docusate, Miralax, senna, milk of magnesia, bisacodyl, etc.
My upper abdominal discomfort at 150mg twice a day was exacerbated by loperamide slowing things too much. I would lie awake for hourshearing gurgles and churning while performing an intestinal massage by beginning at the lower right pressing upward, across the transverse colon to the left, then down. Google for a better description.
Chats, the unique thing about FiberCon is that it can work for either constipation or diarrhea. The active ingredient will absorb and hold excess liquid within the bowel so it provides bulk but also helps firm up loose stool.
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First I want to thank all of you who gave me a much needed pep talk. I really needed that from my fellow travelers. I am better now. I will do my best to keep the faith.
I am sooo not good at being sick or having anything wrong with me. I have no idea - nor does the onc - why I was hit with such a massive dose of muscle and joint pain during the second week back on V. I always thought I had a pretty high pain threshold but this was above my highest level and it made me (not in any order) angry, depressed, a serious pussy and a pain in the ass).
I tried all kinds of over the counter pain meds and had some hydrocodone left from 2016. Still worked sort of. I was so worried about my liver though and didn't want to take a lot of stuff since there is a little bugger there now.
However, yesterday I took an Aleve and it has quelled the residual pain pretty well. So even though Aleve is supposed to be hard on your liver, I am taking it anyway. As someone on these boards once said - what's the worst that can happen? I get cancer? LOL
I will find out tomorrow what my hemoglobin is. I did have an episode of shortness of breath and pounding heart yesterday after climbing a flight of stairs at the Getty Center so it doesn't look good. I will go for the transfusion if that's what it takes.
I am very interested to see what the Foundation One test reveals. I have no problem going on to Xeloda since it seems to be a pretty good drug for many.
Again, thank you for your caring responses.
Chats
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Chats, I have lots and lots of sympathy. I'm at the end of my second week on Halaven. Have had a concurrent cold and ear infection. I've been miserable. On Sunday all I could think of is "is this all there is?"
Particularly since there isn't anything they can do to make me feel better. I just have to suck it up and things should get better.
In 6 years I've never felt this bad. And really I don't feel awful but it's been going on for weeks and weeks. You've got it much worse.
Hang in there for both of us!
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pajim
It's the relentless-ness of what you are going through. I am so over feeling crappy after a day or two! So I get how you begin to feel like this is the neverending story. I just want to feel good again like my old self before the sh*&^ hit the fan again.
For those who mentioned not knowing me in regard to my response to what I am dealing with. I have always been a positive person. I have been extremely lucky to have never been seriously ill before in my life. So there is an element of being very spoiled in that regard, thus my impatience with illness.
I first got the bc in 2011 and got the crappy news that it was back in February 2017.
I do my best to remember there are so many who never get as much life time as I have and their losses make mine look puny. I confess to failing to recognize this from time to time and I apologize to all those everywhere for my shortsightedness when those times occur.
I am grateful for the time I have had and can only hope that I was of some benefit to someone. Never had kids but tried to raise some bad boys in my wild hippie youth. LOL Married 35 years.
I will be 77 on February 17th. My lucky numbers? I freaking hope so.
Hope up.
Chats
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Chats, a few of our stats match - original diagnosis year/chemo regimen and 35 years married! My mets were probably getting a start by 2017 but I didn't realize it...
Do what you gotta do so you can feel better. Planning anything special for your birthday next month?
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Fellow travelers,
I got my blood test today. Good news! My WBC is up to 5.3 (low normal 4.1); granules which is the thing the onc said is important is up to 3.0 (2.0 is low normal).
My hemoglobin is up from 7.1 last week to 7.8. Thank God. He said that is a jump equivalent to a pint of blood transfusion. We now will wait for the Foundation One test to see what's next.
So there it is. Off all meds and my body returns to a better state. My concern about Aleve was also alleviated (pun intended). He said in moderation there is no problem. It's when people take lots and lots of Tylenol or whatever for pain that it's a problem. As I recall you can actually die from an aspirin overdose!
Vinrph,
Hey twin. Well I was thinking about a big bash at my house but then I considered all the work I would have to do and since I was feeling a bit low and didn't think I would be able to handle it. Now, however, with my good numbers and a big lessening of the pain I may actually do it. I have to do everything myself pretty much. Hub works long hours and not available. I do hire a host helper to do the food and drinks and that's great but I still have to shop and prep. I am also thinking about a disc jockey to handle the music. If I do this it's going to be all the way. I have those laser lights - bought them for outside for Christmas. One is a rotating blue and another is white. The green and red I won't use. I was thinking about putting them in the room with the disc jockey. Gotta dance.
If you were closer I'd say come on over!
Chats
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I updated my pic. The old one was of me the day before I had my head shaved in 2011. Sure miss my nice hair. It never did come back the same way. And much thinner from all the drugs.
This one is me and my pooch Tati taken two and a half years ago. Went a lot lighter in hair color. Prob too blonde. But better than bald! LOL
Chats
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Chats, blonde is good. Just don't tell me a long joke. If I attempt to retell it, I'll get lost before the punch line and ruin it! My hair came back darker but it lightens up when I'm outside in summer. Also seems to be thinning a little. Both of my younger sisters color theirs - one of them to cover the gray...
Nice job on the hemoglobin. Our mom always made us eat Cream of Wheat for the iron content when we were growing up. After my 5 level lumbar fusion, I found it on the hospital menu and ate it every morning. They were transfusing me with two units at a time. I wasn't terribly low but they wanted it at 10 before sending me into radiation therapy and drug treatment.
That sounds like some party. You might want to order on line and/or get a few things at a time so a big shopping trip is not too tiring. Lots of stores in our area are advertising free delivery when you sign up for their service.
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vinrph
LOL re blonde and jokes. My own reason for color is that my hair is snow white. I started to get white strands even in my twenties. Both sides of the fam - grandparents were totally white very young. I didn't have a chance. LOL
Wow, you have been through some tough surgery.
The weird thing is when I asked the onc about the anemia and taking iron or eating iron rich foods he said it didn't do anything because this anemia is not a matter of low iron. ??? I have been taking B complex and trying to eat iron rich foods anyway. What the hell. I love cream of wheat. Cook it frequently.
I did try to sign up for delivery from Ralphs and Whole Foods. Found out that you can only get delivery on their selected items. I thought they would offer you the whole store but nope. So most of what I would want to buy wasn't even on their lists. So off to the market I go. I was so hoping I could get delivery because I am tired of schlepping the bags out to the car and then up the stairs to my house. I have two flights up from the garage or a long flight up to the front door. Ugh. I would go bat shit crazy for an elevator. Dream on.
Chats
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Hey chats what's going on? Is everything okay? Did u start xeloda or are you trying something else...
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Chats - ditto from me. I hope you’re doing ok....how was the party?
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