Abemaciclib Verzenio for Stage IV
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My Verzenio is 100 2x per day. I did not know if that was clear on my post. I have no issues with diarrhea just the lung inflamation.
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Hi everyone!
Our friends on the Verzenio for Stage III forum were wondering if anyone here who has been on Verzenio long-term would be willing to share their experiences with them on their thread. Many are talking to their doctors about being on this regimen longer than 2 years, and would love some insight on what to expect. If you'd be willing to share, please feel free to post here:
Thank you in advance for supporting one another!
—The Mods
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I started on Letrozole in Feb 2021 and Verzenio (150 mg) in Mar 2021. Due to extreme fatigue, my mo decreased it to 100mg in Mar 2022.
All had basically been stable (markers, scans (NED since May 2022) and blood work) until recently.
In Jan, my brain MRI showed one of the skull lesions showed activity. My radiation onc is recommending radiation. My med onc was surprised to hear that. She thinks it is a lytic lesion that has become more sclerotic. Last week, in preparation for my mo appointment this morning. I did lab work. My neutrophils absolute have decreased to 0.95. The PA said they get concerned with anything under 0.5 My onc said that if I want to decrease the Verzenio to 50 mg twice a day, she would agree to that.
Is anyone here on the 50mg dosage or started at 150, decreased to 100 and then 50? If so, is it still being effective on keeping you progression free?
I am leaning to waiting till my next visit in 2 months to make a decision. Not sure why she is leaning to keeping me on Verzenio and not changing to another drug.
Thank you in advance to anyone who can "shed" any light.
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I took a 2 week break (2/7-2/20). This morning I had the worst bout of diarrhea that I have ever had. My neutrophils are the lowest they have been in 3 years.
Has anyone here taken a "vacation" break from Verzenio? Did you experience any side effects that you didn't have before when you went back on it?
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@going2beatthis I've been thinking about you. I hope you're feeling better and are on a more even keel today. Maybe just aftereffects from traveling?
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@Seeq - Thank you for checking on me.
Finally heard from someone at the 2nd mo's office yesterday after trying to reach out to them on Tuesday. I have a teleconference with her Tuesday morning.
In the meantime, I had a really bad episode of diarrhea Thursday morning (probably the worst I have ever experienced). Sent a message to my mo via Mychart detailing side effects and concerns, Got a call from her N.P. Thursday afternoon who was great and discussed everything that I was experiencing and my concerns. One of my questions in my message was whether or not the side effects I am having could be from taking that 2 week "vacation" from Verzenio in February and now my body has to get used to the medication all over again. She said that often happens. Wish they would have told me that was a possibility when I asked about taking a break. Never would have done so! Anyways, in addition to the big D attack which happened to a much less degree after lunch (a banana and almond butter), I have been experiencing some stomach issues the last couple of weeks and peeling of the skin on my fingers (I had not written about that to my mo). Had seen my GP in the morning, who thought it might by eczema. When I was talking to the N.P. I mentioned it to her and was very glad I did. She said the peeling was most likely from the Verzenio (my dermatologist confirmed that when I saw him yesterday morning.). Best of all, she moved my next blood work and visit with the onc up a month.
Am making sure to take my Bio K+ every day and my vitamins. Had not been as vigilant about doing so since going back on the Verzenio what with traveling and all. I am definitely convinced that they are the reason I didn't have any side effects before.
Hope you are having a good weekend!
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@seeq I took a week off the Verzenio when going to visit family in Florida. Going off of it was a good decision and I enjoyed my little getaway. Even though I still felt tired and weak , no diarrhea .But when I went back on it after a week off It was like starting all over again, and with the D it takes away your quality of life because you have to schedule everything around bathroom time. So 2 months ago I asked my Onc if I could go on a lower dose, and he thought it was fine. So since I’ve been on the lower dose I feel like a normal human being again. I don’t get those bad bouts of diarrhea and have more energy to do things. My Onc changed my dosage from 150 twice a day to 100mg twice a day
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@Shanagirl - Glad the dose reduction is helping. You mention that you are on 100mg a day. Did you mean 100mg twice a day?
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OK. I have a very weird side effect. I am assuming it is from one of the treatments I am taking but I have a feeling it might be the verzenio or the Faslodex or both.
I have been having a lot of hair loss. I can't believe how much hair is in the shower drain.( I thought I was losing a lot on the Arimidex! Nope! ) Also, I have been having sore spots on my scalp all along since I started treatment. They wander around my head and it's different almost every day. It's like that pain from wearing a ponytail all day and then taking it out. Today it is exceptionally painful. For some reason, I though coconut oil would help and it has a little bit but this pain is unbelievable and unbearable. I finally had to take Tylenol and ibuprofen because it was paining me as I just sat here. It didn't help.
I have only been washing my hair twice a week thinking I would lose less that way and I haven't changed my shampoo or conditioner. I don't wear ponytails or anything else in my hair. I blow dry it and brush it once or twice a day. No other treatments.
Has anyone else had to deal with this crazy side effect? If so, what did you do about it. I can't get over how much it hurts.
I should be picking up my new wig topper 😪 this coming Friday. I have a terrible bald spot on the back of my head and the sides are getting pretty sparse too. Actually, the sore spot today is where the bald spot is.
Have I mentioned how much I hate cancer? Thanks in advance if you have any advice.
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@shanagirl - I an on 100mg x2 daily. The dose reduction made a big difference in QOL for me. I've never taken a meds vacation - too chicken, I guess.
@dulcea I lost about 2/3 of my hair when I was on 150mg x2 daily. I requested a dose reduction after I reached NED at 7½ mos. I requested it to relieve the D, and had the bonus of more energy. After a few months, I noticed my hair getting thicker. I'd say I've had 2-3 "layers" grow back in. Recently, I feel like I'm losing more hair again. I've had 'sensitive' areas on my scalp, but not really painful. Interesting note - when I looked back at a picture taken when my hair was pretty thin, it was almost all grey. As it grew back in, I got more of my brown hair back - weird.
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I definitely had the scalp pain, I know exactly what you’re talking about. I sprayed rubbing alcohol on the sore bits. I’m on a low (lowest) dose now 50mg twice a day. I get a patch of rash/blemishes on my face that annoys me.
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@seeq - that is interesting about the brown hair growing back. I am already on 100 2x/day and it seems to be working so I will have to go with the balding. I am somehow settled with that idea for some reason. I'm glad to see that someone with liver mets is doing so well for so long on VErzenio…well besides the crazy side effects. Keep it up!
thanks @margesimpsom. Did the alcohol help? I don't know why I thought coconut oil would help. It made my hair greasy LOL.
@intolight I just use tons of conditioner. That seems to help the thin "straw" I am growing on my head.
There is a good handful of us who have had this scalp pain yet my onc says it's not from the verzenio. I wonder if they read these boards. They should! This is real life. Unfortunately.
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I definitely had scalp pain on Ibrance, less so on Verzenio- it really helps to shampoo more often or do scalp massages. I recently took a break from Verzenio because my hair had thinned so much, am trying MSM supplement and got a minimal pixie cut.
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My scalp was hurting and my hair was getting so thin I was very frustrated. I started taking INOSITOL and BIOTIN GEL CAPSULES (10,000 mc) and my hair has be growing. Back like crazy. It’s all different lengths but at least it’s getting thicker again. My daughter a hair specialist recommended this product. You can get it On Amazon along with the vitamins.
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so these are the products I mentioned for hair thinning in my last post
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For those experiencing thinning hair, I have found collagen to help with not only my hair but also with soft nails.
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@cure-ious How long of a break did you take from Verzenio and how long until your hair started growing back? It's not an option for me to stop it though. I'd be too scared.
@shanagirl Thanks for all the information. I checked all the drug interactions with what I am taking and with the biotin and inositol and there don't seem to be any issues. I have been taking biotin for a few years because my hair started falling out when I started taking Arimidex. Not this bad though! Do you remember how long until you saw some hair re-growth?
@going2beatthis collagen ingested or on your head?
Thanks everyone. I tell myself that all these side effects mean the therapies are working hard for me!
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I tried the alcohol because I was wondering if my scalp was dirty or if it could actually get infected. I think it helped short term but I had to do it every day for a while. If I thought of coconut oil I probably would have tried that to soothe it!!!
for my face I’m using Paula’s choice wash and toner (salicylic acid) for acne and it’s helped- when I don’t have the “rash” it looks great!1 -
cure-ious I think you’re right about the frequent washing. I eventually washed my scalp everyday (even if I didn’t wash my hair).
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@dulcea - I tried biotin (Viviscal Pro) but after 3 months stopped it due to headaches at the back of my head. The collagen I use it a powder that I mix in water although you can also use juices.
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Hello Ladies,
I recently started Verzenio and thought I would share background and experiences so far. This is my 4th line of treatment (after cancer came back in 2020), after 1) Ibrance and arimidex, 2) Ibrance and faslodex, 3) Xeloda and tamoxifen. The 1st line worked for nearly 3 years, 2nd line did nothing for 6 months, and 3rd line helped for nearly a year until it didn't.
I took about a 2wk break between lines 3 and 4. MO says sometimes there can be a positive effect after stopping Tamoxifen. So started Aromosin (exemestane) on March 1 then added Verzenio on April 1. The first 2 weeks I only took it in the morning (150mg); the next 2 weeks I continue the morning and add evening, every other day. Then after 4 weeks, I should be up to 100% dose (150mg/twice daily). I have taken a few recommendations from this board and so far, so good. I drink lots of water after each dose (up to 20 oz) and I started a probiotic every other day. For now on the 'off' evenings; will likely switch to lunchtime bc MO says I should space out probiotics with Verzenio. Not sure why (maybe related to possible low immune system?) and if this means other things like yogurt but will ask when I see him in a couple of weeks. I have Imodium on standby but haven't needed it so far. Energy level is about the same for now.
My best to everyone going through this awful disease. Love to see the support and advice on this thread!
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hello evenpar3,
my mother has been on verzenio and faslodex as a first line treatment for nearly 2 years and is doing pretty well. I hope you have good results as well.0 -
@evenpar3 You have had some good luck with your lines of treatment. And as someone who has suffered with D from Verzenio, it's great you are not dealing with that. That was a smart way to start the treatment too. I wish my doctor suggested that. Instead I was thrown on 150 mg twice a day and lost 15 pounds immediately due to nausea and had to figure out the whole D/Imodium balance. I did try probiotics but I felt as if the D actually increased on that. You have a great Onc. I am glad mine is leaving for so many reasons. I am on 100mg twice a day now and it took a while to settle into that. I still don't like the crappy side effects but I am here to complain about it.
@margarita12 that is great news about your mother. Thank you for sharing her success. I love to hear about those. I always come here when I need that positive boost about this stupid stuff.
I just started back on Verzenio after taking a week break due to having my gallbladder out yesterday (OUCH!!). I so very much enjoyed having my appetite back again and loving food. I ate ice cream and submarines sandwiches and french fries and cheesecake. I haven't seen if I gained any weight yet, but I probably did. My fatigue was better and my brain worked better. I think I might ask my Onc if I can take another break during my vacation. Has anyone else taken breaks just for vacations?
And back to my thinning hair and painful scalp. The ladies who suggested to wash my hair more often were right! It helped a lot. But then I got my wig topper and it has these little clips in it that cause scalp pain. I can't win. I will probably be moving on to a wig soon though. If I didn't work with kids, I'd probably just go bald and live with it.
Stay strong everyone!
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@dulcea - you might want to read some of the posts from the beginning of April. I did take a "vacation" break. Will never do that again!! Like Shanagirl said, it was "like starting all over again."
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@goingtobeatthis now that you mention it, I remember reading those vacation posts now (anesthesia brain?). I guess I'll have to decide which is more important. Do the benefits outweigh the risks?
Maybe just a week won't be as bad. I still had D all week too so that didn't improve. I was wondering how long it really takes to completely leave your system.
I'm glad I have this opportunity to experiment with a week vacation. I really want to feel good with my five cousins, eating and drinking and swimming and kayaking and doing puzzles and laughing and laughing and laughing instead of pooping and sleeping and throwing away uneaten food.
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@ Dulcea - best of luck on whatever you decide.
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Just tried this! Now I can have "wine" without having to take a a medication break while on vacation. It is processed exactly like a Sauvignon Blanc and then the alcohol is removed by reverse osmosis. Both my husband and I can't tell the difference. Can't wait to try the Rose and Red blend Giesen also makes!! Taking a couple of bottles on our next cruise!
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@going2beatthis and I hope these medication vacations don't let cancer run rampant.
Also, are you saying that you don't drink wine while taking Verzenio? Or do you like to drink a lot? I have my one glass a week on Friday nights. The real stuff though.
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@ dulcea - Although, I was what I would consider a social drinker (a glass of wine when we were out to dinner, a Pina Colada, scotch or a martini every day when on a cruise) I stopped pretty much all alcohol after being diagnosed in Feb 2021 and going on prescription meds for the first time in my life. I can count on one hand the number of times I have had a drink (wine or liquor) with the exception of the 4 days this past Feb (we were on a cruise) when I took my "vacation" break.
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