Abemaciclib Verzenio for Stage IV
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Thanks @goingtobeatthis and @moderators
Oh boy did I go down the rabbit hole on probiotics! There is some interesting thoughts out there concerning breast cancer and probiotics as treatment.
I did find a short -term rat experimental study directly addressing a specific probiotic for diarrhea in Verzenio.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10388128/
It appears safe for most adults and is available at my local CVS.
My history with probiotics causes diarrhea (I know! I'm weird!). I also have some subclinial autoimmune stuff that ramps up with some probiotics so normally, I stay away from them. I will give this a shot though. I am so sick of diarrhea, so I am desperate!
As for diet, NCODA recommends: (what @going2beatthis recommends too):
Diet Recommendations:
▪ Avoid greasy, spicy, or fried food
▪ Avoid milk, caffeine, alcohol, and high fiber vegetables
▪ Eat small frequent meals
▪ B.R.A.T Diet - Bananas, Rice, Apple Sauce, Toast
▪ Drink three or more liters of clear fluid per day
• Water, clear liquids, soup, sports drinksThey are not even sure why Verzenio causes diarrhea.
And now I'm off to CVS to stock up on Imodium and try some Saccharomyces boulardii.
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I was given Verzenio and Letrozole as first line of treatment for ER PR positive HER2 Negative IDC and ILC with bone mets. It has been very effective in stopping disease progression but in terms of QOL it has been horrible. I have had lots of diarrhea, sometimes resistant to treatment, the whole year and a half of treatment. It also caused fatigue, muscle weakness, SOB, chronic cough, and recently I had my first diverticulitis flare and resultant hospitalization. Since I have not had constipation for many years I am more than a little suspicious of the Verzenio. I finally got a second opinion and with it a dosage reduction. We will see if that helps. So far my cancer treatment has been worse than the disease.
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We're so sorry to hear this, @jlgarber. We know how difficult the side effects can be to manage and live with! Many of our members have found relief from some of the more common and persistent side effects by reducing their dosage, and we sincerely hope you find the same relief.
The Mods
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@jlgarber you have my sympathy. I have been there! When I first started Verzenio, I was so very sick. My biggest issue was the nausea with almost a 20 pound weight loss. Nothing helped the nausea. After a dose reduction pretty quickly, it was like night and day. Fingers crossed that you experience less symptoms with your dose reduction too.
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When I took a break from 150 mg to 50 mg (about 2 1/2 weeks) I did not experience diarrhea at all when I started back up. If I do get it now it's for a day maybe and it's because I ate something spicy or greasy. I am thinking I'll get it again though when I switch it up to 100 mg in a few weeks. @dulcea have you gotten any better and did you determine if it's from Verzenio or from gallbladder removal? How is it going with your new probiotic from CVS? I also agree with you that the nausea can be the real problem. I also lost 20 lbs due to nausea and small bouts of diarrhea. It was scary but I've gained half back and I'm good with that. And dose reduction is the key!
I get confused with the water drinking. I know you need to drink a lot regardless. But if you drink even more when you have diarrhea to keep from getting dehydrated, aren't you also promoting the diarrhea because you're supposed to drink water to keep going regularly. I'm probably over thinking it. I know it's coming in a few weeks and I'm so enjoying being almost normal at the moment. Enjoying most foods for the moment.
@intolight thanks for mentionng that it took you awhile to get back to normal. It helps to know someone who has gone through it to enable me to get through it. The diarrhea and nausea are the worst of all symptoms for me. That and insomnia. Thank you for the diet info @going2beatthis I will be referring to that soon I think when back up to 100 mg. And thanks @moderators for the links to additional information. I'll take any info I can get!
I try to stay away from sugar, fried and dairy but the past few weeks I've been on a binge. I need to settle down because I have bloodwork for my primary care appointment in a few weeks. I know that letrozole and the sleeping pill I was prescribed, mirtazapine (another story!) are cholesterol boosters so I'll be curios to see how sky high my cholesterol jumps. I don't know what there will be to do about it. I sort of don't care to be honest. I cannot take statins so I'll just have to severely limit my diet again. Or ignore the cholesterol issue. Anyone have crazy high cholesterol?
Is anyone on a sleeping aide called Mirtazapine? I was prescribed this since I've been having crazy bouts of insomnia. I am guessing it is from the letrozole? Anyone have thoughts on insomnia. I know a few of you have mentioned what you take and appreciate that info.
@jlgarber Sounds like we are on the same regime. I agree QOL leaves a whole lot to be desired. I am currently "OK" because of my lower Verzenio dose but I know what's coming and I'm not looking forward to it at all. Did you say you have been on the letrozole and Verzenio for a year and a half? And miserable side effects the whole time? And what dosage were you lowered to? I am there with you 100% on the treatments being worse than the disease. I do hope you do better with the lower dosage and still getting the cancer fighting results we all want. That is my hang up. It's like choosing to feel good and "feed" the cancer or feel really bad and kill the cancer. I think there has to be a happy medium. And we'll find it.
Sorry if I'm all over the place here. I have not had a chance to get back here to read and reply. I always look forward to the information and news from this group we all unfortunately belong to.
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@jlgarber ‐ I'm so sorry you've Bern suffering with your treatment for so long. I changed from 150mg to 100mg and it made a big difference in the GI issues, my fatigue level, and my thinning hair. I hope the dose reduction is a game changer for you.
Regarding diet - I learned that I can eat most foods if I don't eat too much of them. I can have a salad with dinner, but not for dinner - and not every day. I can have one piece of bacon, but not two. And, it finally occurred to me (after 3 years🤦♀️), that if I took a dairy digestive, I could enjoy a little more dairy. I do better if I don't eat too much at one time (nothing restrictive, just normal sized meals).
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Thanks for this discussion ladies. You all have encouraged me to try some diet changes. I currently cook dinner for my family of four: ages 9, 47, and 71 & 72. I barely have energy to keep meals healthy much less cook special for me, but I am going to try to swap chicken for me instead of spicier foods. It should be an easy swap. I can't do a lot for the family but cooking is my language of love. My DD is a nurse who works nights (and hates to cook) so I try to cook a nutritious dinner for her before she leaves. (I cook and she does the dishes.) My DGD is extremely picky but we try to make her eat what we eat. I think I would eat healthier if it were just my DH and I. Anyways, I will try and see if it helps curb the D some. Right now I eat just about everything, in moderation of course. But I am having a nasty week and really need for it to stop.
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@intolight I take time to do some "food prep" on Sundays. I spend a few hours in the kitchen and prepare lunches and sometimes dinner for the next few days. You could do that for your own healthier meals and still cook comfort foods for your family. It must be difficult to have to cook for so many when you are going through all this nonsense as well.
@marcials1 it has only been a few days on the probiotic and I am only starting with one per day. So far, nothing has changed. I am getting up at 2 a.m. to poop! I sometimes go five times a day. I am taking usually two Imodium a day with really no response to it. Ugh. I will NEVER stop verzenio again unless I am stopping it for good. I hope this ends soon.
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@intolight I only cook for DH and myself. He will eat alot of what I do with the exception of cheese lasagna. When I make that I have to make 2 versions. His has "normal" cheeses and noodles and bottled sauce. Mine has plant based chesses, ladagna noodles made from lentils and homemade tomato sauce. I make them both in loblong casserole dishes. I cut it into sections and freeze each section in a quart size freezer bags making sure I mark whose is whose. Lasts for lots of meals. 😀
When we have potatoes, he will sometimes want a white potato whereas mine is always a sweet potato (purple, orange, white, japanese).
The other day I made a chicken dish with plant based shedded parmesan and linquini made from brown rice. He actually liked it alot. 🤗
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@going2beatthis Thanks for the ideas. I need to be more diligent about cooking healthy but it is hard when I feel this poorly. My DH will try anything I cook, and my DD would too so I don't have that excuse. I just always fall back onto what I know because I can do it quick. This week I need to concentrate on feeling well for my son's family who will be here with three little boys. I will cook for them and try more healthy stuff once they leave. I can add one healthy item to every meal this week anyways if I feel up to it. I just need help with the planning and shopping. I should make that my goal!
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@intolight enjoy your son and grandchildren.
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Hi —
Just wanted to share my experience with Abemaciclib. I’ve been on it for seven years and five months with no progression (CT scan on Tuesday — fingers crossed!). I’m in a clinical trial so I also get Faslodex and Zoladex injections and I take a Pik3 inhibitor that doesn’t have a name. I don’t have an Pik3 mutation, so it’s impossible to know if I’m benefiting from it.
Initially, I had a lot of problems with diarrhea and nausea, but both were addressed through prescription Lomotil and Zofran. I take the Lomotil every morning and Zofran as-needed. I started taking the Lomotil daily four years ago and it made a HUGE difference. I take a second dose later in the day if we’re going out to dinner — just in case.Even with the Lomotil, I’m unable to eat raw vegetables and went years without a salad until I started to experiment with microwaving it. I found that with 13 seconds, the lettuce is edible (well, to me it is) and doesn’t give me digestion issues. Then I grill or saute other veggies to add on top. (Tomatoes and avocado give me no problems since they’re fruit.)
One thing I absolutely can’t eat are stone fruits, which is a bummer.
The only other side effects are occasional rashes, leukopenia and insomnia. I take 1mg of Ativan + 25mgs of Hydroxyzine every night.2 -
@kellyld - thanks for sharing. Wow, almost 7 1/2 years. Is this your first line of treatment? Were you deNovo?
Good luck with your upcoming CT scan on Tuesday. Sending hugs.
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@kellyld - 7½ years is fantastic! Good for you and good luck on your next scans! I, myself, am a few weeks short of 4 years on abemaciclib and anastrozole.
I'd love to know moreabout your dx. What type of bc, mets location, de novo? (You can see my details in my signature line. I'm ecstatic with 4 years on my first line treatment with liver mets. I still "hold my breath" around scan time…coming up in a few weeks.
I'm also curious about the trial you're on - does it have a name?
Thanks so much for coming and sharing!
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Wow, the 7.5 years on one treatment sounds great, @kellyld! Fingers crossed for those scans coming up that it continues! :)
Out of curiosity, do you know the name of the trial? Would be curious to look up the PIK3 Inhibitor for others that might be interested.
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What do people do for fingernails? This is terrible!
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@dulcea - my nails are brittle, but that is because I am an aromatase inhibitor which supresses estrogen. I have been using collagen which has made them stronger. Good luck.
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Question: I've been on Verzenio since Dec. 23. My tumor markers dropped dramatically the first months on it. Now they have risen by 100 points since last month-from 300 to 400, which seems astoundingly high, but they were much higher before tx. Scans show stable, no growth, the ascites I had (not much, but still there) is gone, and the cardio effusion is disappeared. Is it normal for TMs to jump around a bit on this drug? I'm on fulvestrant as well. I'm scared about the markers and my doc says I shouldn't be, but she's watchful, of course. I get scans every three months. My labs are always normal, too. I don't track my numbers because I can obsess about them; she kind of volunteered them today at our visit.
Claire in AZ
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thanks @goingtobeatthis for the info. I'll give that a try. Any side effects?
@claireinaz my old oncologist didn't look at tumor markers at all and never took them. My new oncologist takes them all the time. I discussed this with my new onc. She said the scans trump tumor markers good or bad and would never make a decision solely on tumor markers but she thinks they are helpful. So, this is a new topic for me too, since mine have been jumping around just the last two months. My point is that each oncologist has their own opinion but they take good care of us.
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The oncologist I had in Florida told me once they get low, it's not unusual for them to bounce around. I wouldn't like the 100 points, but I'd follow you your MO's lead. If she's not worried, I'd try not to worry too much. You're still scanning frequently, so that's good. And you can always call if you think something feels different or you have new symptoms.
I've heard other things can affect your TMs, too (e.g. inflammation)
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My oncologist says the same thing that most of you are saying I think. The tumor markers are used as a generality, to show that yes indeed you have the tumors and the numbers going down of course is a good sign it is not necessarily an end all. And the same for vice versa if they are going up. The scans are what is used to make decisions. My markers are getting better slowly but my scans are the same as three months ago and even one tumor has gotten a little bigger. Hope this info is helpful @claireinaz (And I've only been on Verzenio and Letrozole since April/May.)
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@dulcea - no side effects from the collagen. Benefits: stronger nails and thicker hair.
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@going2beatthis thanks again for the info.
@marcials1 D is not better. I feel like some of the other SEs that I overcame prior have also returned, so it's not just the D. Thankfully my appetite is still pretty good but I am not able to gain weight. I am going on vacation the 13th of this month and will take 50 mg for that week instead of the 100. I hope that helps with the D at least when I am on vacation, but would appreciate if it fixed the issue permanently! This will be a good experiment. Thanks for asking. How has your journey on the 50 mg been so far? Are the symptoms better for you at the lower dose? My new oncologist yesterday said that the lower dose does not change the efficacy, its just all about what people can tolerate. I should have pressed further and asked why then put people on 150 and 100 mg when they know it will cause crappy side effects (no pun intended).
So the moral of the story is to NEVER take a break from Verzenio for an extended period of time. I'll never do that again.
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Another question for everyone: has anyone had any blood sugar changes on Verzenio?
I have been pre-diabetic for 14 years, trying to keep away from full diabetes. I thought my meter was wrong or my strips were old because all my numbers were suddenly low. Lo and behold, my recent A1C was within the normal range for the first time. I know it could be due to the weight loss too but I don't think it would change that much! I'm not complaining though! Anyone?
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@dulcea - in my experience weight does make a big difference on ones A1C. Doctors usually tell patients with elevated A1C to trt to loose weight. My Mom controlled her sugar by what she would eat.
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@dulcea So sorry D is not better! And the other SEs too. What are they (oncologist, etc.) telling you to do about it? It can't be good to continue with that and with taking Immodium or whatever you are taking. What do they say? I hope the 50mg helps with it while you are on vacation and I bet it will! I am still on the 50 and have no D at all. But that will likely change in about 2-3 weeks when I up to 100. I'm going to stay positive that 100 will not bother me! Interesting what your oncologist said about the efficacy. One of my tumor markers continues to go down which is great but the other is holding steady. And my scans a week ago show no improvement at all on the 50. Not worse either so at least that is a positive thing. I think they push the 150 and 100 because some women must be able to handle it or adapt to it. Anyone out there that can verify that for us?
Also, I don't think I've had any blood sugar changes like you mentioned. Good for you on the A1C! At least there is something positive for you to see. My side effects are my white blood cell count was way down but improving but my red is still really low and not improving. Adjusting my diet for that. I have real low iron. Also my blood pressure which is generally low is super low. And I'm starting to get headaches. So I'll work on that until my next labs and scans! Also have crazy high cholesterol. My primary care doctor is not even giving me a hard time on that because she knows some of the meds are causing it. So on to another day in paradise. Could be worse!
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@marcials1 the oncologist told me not to be afraid of taking Imodium because we all know what happens when we don't. That's it. She said if the D gets too crazy to call her and she will test for bacteria or something else in the stool. Not sure what her definition of "crazy" is.
After being on Verzenio for a month (150 and 100) nothing had changed in my CT scan. But then two months later, BAM! Significant changes. So hang in there.
Is it the Verzenio that increased my cholesterol? I couldn't find anything about that. A year on a statin and it has gone UP 30 points. I blamed it on my diet. When I couldn't eat, I ate things that I could, like ice cream and other high fat foods just to get food into me. Now I have to increase my statin and go back to a low fat diet too. I think I should also consider that some of these side effects could be from the Faslodex and/or the Xgeva.
That's great that you haven't had to deal with D. Maybe that's how everyone should start on Verzenio. Slowly. I'm curious to see what happens when you go on 100 mg. Hopefully no D.
Sorry about your wonky bloodwork. I am anemic also but my iron is OK. That's the only issue with my bloodwork.
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Hi @dulcea hoping things are under control. If the Onc told you not to be afraid of the Imodium then I guess that's the way to go. I do wonder what their definition of "crazy" is though too!
I'm hoping to see those BAM! results at my next scan sessions in 3 months. I'll have been on the 100 for a few months by then so guessing there will be some improvement. That is if I can stand being on the 100. Oh and about the cholesterol, I think it is the Letrozole that I am on that caused mine to go up, not the Verzenio. Not 100% sure on that but I believe so. My primary care physician is cool - she knows I won't take a statin so just told me to be more careful on my diet. I was doing like you - ice cream and other dairy I don't usually eat just because it made me feel a little better for awhile.
I'll let you know what happens when I go to 100 mg.
Anybody have really low red blood cell counts? Not sure yet if mine is iron related or not. Anybody as low as 2.71? Hemoglobin way down too. Thanks…..
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@dulcea Hi. Yes, my blood counts are low with the last time at 2.40. That is where they trend right now. My onc says it is where my body has stabilized and she watches that level to see if there is a drastic change which would cause her concern. I never looked at it like that before but she is not overly concerned.
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