Abemaciclib Verzenio for All Stages
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prairie sea,
Thank you for the suggestion. I want to be prepared! I just started the med yesterday.
Julie
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Hello. Where could I find more information about Verzenio compared to Herceptin? Pros and cons of each for early stage triple positive breast cancer?
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Iska - I don't have any info for you, but you might ask in a herceptin thread, or one for HER2+
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I also was started at 200mg 2x a day and I've been taking that for about 3 years 10 months. The fluid under my right lung in my pleural cavity has decreased A LOT and the fluid around my heart is gone too. Doing pretty good, but I am getting some side effects now that I need to speak to the doctor about. Mainly, a severe stomach cramping episode I've had about 4 times now over the last year that starts early evening and doesn't let up until early morning. Feels like I'm in labor.
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Hi, all! I just came to this topic threadfor further insight from the community regarding abemaciclib/Verzenio after watching a webinar in which Dr. Sara Tolaney, Chief of Breast Cancer Division at Dana Farber, outlined the highlights from the December, 2022 San Antonio Breast Cancer Symposium. I was specifically interested in the MonarchE Study results at 4 years of followup, but she provided a lot of great info and updates on a range of topics beyond this one.
The MonarchE segment begins at around 18:20 mins in. She does a nice job of explaining the benefits, limitations, and which non-metastatic ER+ patients for whom it's recommended. I am 13 months into aromatase inhibitor treatment, and qualify under the recommendations due to 1+ node and >5cm tumor, so I plan to ask my MO if he sees any value in adding the CDK/4 to the mix at this point- particularly considering side effects and absolute benefit %. I thought some of you may be interested in the info as well
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I had a good 4 year run on abemaciclib for bone mets, recently ended due to liver lesions popping up. For me, loperamide worked too well, causing an unpleasant level of constipation, so after a Verzenio dose decrease to 100mg, I took 2 FiberCon tablets daily at noon.
The generic=calcium polycarbophil, is found in the laxative (!) section. I preferred it over psyllium/Metamucil for travel portability, etc. There were still bouts of loose stool, sometimes diet related, however we're retired which meant during the pandemic we were mostly at home anyway.
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Folks, we created that thread and BUMP it because we heard feedback here that you (and likely others) don't get the information you need from our Announcement on the All Topics page. This way, the information stays in front of folks who don't visit the forum 24/7. If you'd like to no longer see that thread, please use the block thread feature.
Thank you.
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hi - apologies in advance if this is too much info but a handful of times, diarrhea came with specks of black. Anyone had this happen? Not sure if this worth freaking out over. Thanks in advance
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hi I had posted a question about Verzenio and got directed to this discussion . Just found out today I will start Verzenio alongside Aromasin after I finish radiation in about 6 weeks. I’ve been reading about the side effects and it’s pretty scary to read. My hair has started to come back after chemo and hate the thought of losing it again. Has anyone had that side effect? I took Arimidex after my first diagnosis for five years and tolerated it ok. Had side effects but it kind of became a new normal. So the Aromasin does t scare me as much as the Verzeni
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mvspaulding - I've had hair 'thinning' on Verzenio. I'd estimate between half and 2/3, based on the size of my ponytail. That was on full dose of 150mg x2 per day. After the dose reduction to 100mg, some of it - I'd guess maybe 1/3-1/2 of what I lost - grew back. The GI issues were a bigger problem, and the dose reduction eased that some, too. Not everyone has GI issues.
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I been on it for 9 weeks now. It hasn’t been to bad. My hair has been growing bad still. I did notice my leg hair isn’t coming back as fast. My biggest issue is fatigue. I get really tied at night. I would stay up to about 10 now I am getting really sleepy at 8:30. I was also winding about blood work being on this. What have other blood work been. I have had low white blood count and high RDW-SD. Not sure what all that means.
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@margecandoit - I've had low WBC and RBC pretty consistently, but not worrisome to my MO, and never needing a break from treatment. There have been other makers slightly high or low, but MO was absolutely not concerned with them (MCHC, MPV, MCH, ANC [but never below 1.1]) I've had other elevated numbers related to my liver mets (all resolved), but nothing that should be an issue for you. If you're at 9 weeks with minimal side effects, you're doing great! Good luck to you!
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Seeq- thanks for the response. Yeah I feel I am doing ok and my MO isn’t concern about my blood work. Thanks for letting me know it’s normal. I just didn’t know what the high RDW-SD was when I had normal RBC count. I am assume just some things out of wack with meds.
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My oncologist has suggested I take Abemaciclib as a phophylaxis against recurrent breast cancer. I have had a mastectomy with no nodal involvement and am currently taking aromatase inhibitor. My recurrence score is 33 and while I am "cancer free" they say it will recur with this score. I declined chemotherapy. Is anyone on here taking Abemaciclib prophylactically? What are your side effects? I understand diarrhea is the main one. I read that it crosses the blood-brain barrier so am worried about long-term cognitive issues. Thank you and my apologies if I am not posting this in the correct place. I'm new here.
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Hi Linda. My main side effects at full dosage (150mg x 2, plus an AI) were fatigue, diarrhea, and hair thinning. The fatigue improved somewhat over a few months, and then noticeably after I had a dose reduction after 7 1/2 months (my bc was no longer visible on scans by then), and more of my hair started growing back in (bonus!
I can only speak from a Stage IV perspective, but crossing the BBB is considered a good thing because it's expected to help prevent brain mets.
There are two other threads for abemaciclib for Stage II/III that have a lot more traffic than they used to, now that it's more widely prescribed. You may find people there who relate more closely to your experience.
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Great idea, @seeq!
@lindainjefferson Here are the two other threads about verzenio (abemaciclib) that SeeQ mentioned:
We hope this helps!
—The Mods
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RC Horowitz has a paid research opportunity for someone on verzenio, ER/PR positive, Her2 negative and diagnosed within the last 3 years. The study is a one hour zoom interview with a person who provides emotional support to you, accompanies you to medical appointments or helps with making medical decisions. The person can be a spouse, partner, sibling, friend, or relative. The stipend for the interview is $175.00. If you think you qualify, please send me a private message and I will share the contact info. I have done a study with the company earlier and they are good people. Thanks. Mary Jane or mojos on these boards. Thanks.
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Hi all, thought you'd be interested in this new research news story:
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Have any of you who take Verzenio had the experience of getting the bad diarrhea months after having started it? On a lower dose?
I started taking this early last May at 150 mg twice a day. I never got diarrhea, just some occasional lower abdominal gas pains and rumblings, etc. My dose was reduced in December to 100 mg twice a day due to terrible fatigue. Last Monday, I started to get some diarrhea and now it is just continuing. I've been overall feeling like it is the Faslodex that has caused a lot of new symptoms that I been having - worse joint aches, hot flashes, headaches, etc., because they seem so "low estrogen related", but I can't quite figure out why I've started having this diarrhea. On Friday the nurse at the oncologist's office (he wasn't available) told me that she thought it was most likely the Verzenio, but I disagreed with her because I'd never had it on the higher dose and couldn't imagine that it would start on the lower dose. Have any of you experienced anything like this?
I've been feeling ill overall lately with all sorts of body aches, headaches, stomach upset etc., and was at both urgent care and the ER yesterday (urgent care sent me to ER), where they found nothing of note. I continue to think all of this is likely due to Verzenio and Faslodex side effects (or possibly a stomach bug or food poisoning, but it seems like it's been too long for those possibilities), but just can't figure it out. Do any of you have any similar stories to tell or ideas about what might be going on here? Thanks much!
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Dear all,
I have been a silent reader on these boards and have profited a lot from reading other people's experiences. So here is a summary of my personal experience with Verzenios - hoping that it helps some of you.
I took Verzenios for stage II high risk of recurrence breast cancer and just finished my two years of adjuvant therapy. I took 150mg twice daily till the end. I had a rough time on this drug, but still consider myself lucky to have had the opportunity to take it. My attitude at the start was to give it a try, and to ask for a dose reduction when needed - I never did.
Diarrhea: This was heavy at the beginning, but I learned to control it with preemtive loperamide and psyllium husk (e.g. brand name Metamucil, but there's other options, too, including other types of fiber). Make sure to keep a distance of at least two hours before and after any important medication. I took a tea spoon of Metamucil twice a day plus a daily dose of loperamide, which I adjusted from time to time. Metamucil alone was not sufficient for me, but it helped to widen the sharp ridge between diarrhea and constipation, making the loperamide dosing much easier. My other GI symptoms (mild nausea, abdominal pain) tended to disappear whenever my bowel was "stable" for a longer period of time.
Fatigue: This was my worst side effect, although I must admit that the first year was quite ok - At the beginning, coming straight out of chemo and radiation, I didn't even feel a difference. However, in the second year, my fatigue increased slowly / in steps. Excersise didn't have a positive effect and over time I had to give up more and more things that I enjoyed being able to do again after chemo. I should probably have tried a dose reduction, but decided to stick it out.
My blood counts were generally ok, only at the beginning I had to pause for a few weeks, then restarted on the same dose. After 1.5 years my oncologist observed a blood anomaly called macrocytosis, probably caused by a vitamin B12 deficiency that was then treated with shots. Other side effects that I attribute to the Verzenios were teary eyes, considerable hair thinning, brittle nails and feeling very cold especially when tired. My physiotherapist also noted that my tense muscles in the back/neck/shoulder could be caused by medication, but I am not sure about this.
Good luck to all of you, ladies! You never know what you get in the side effect lottery. You could be among the lucky ones that do hardly notice. My personal experience was mixed, but it could have been worse. It was doable.
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I'm new. I had surgery 12/23 when they discovered a lobular cancer mass (8cm) in left breast. Last mammogram 7/22 showed 0, except for a ruptured implant, which is why the replacement surgery. In surgery, both were ruptured after many years. Since surgery, I get chills hourly. First ONC visit, she gave me Letrozole, which only increased hot flashes and chills. Lobular cancer is fed by hormones. Doc removed the mass in surgery, and shaved nodes from my ribs and chest wall. After many tests, including a PET scan, it only appears up to the chest wall, but no where else. Nothing in breasts. I found that Abemaciclib (although prescribed) wasn't avail bec Lilly holds a 7-yr patent, so no one else can make the generic until after that. Verzenio was $22k, so I filed for a hardship since I am retired at 75. Lilly sends it free. I stopped hormone gel, and hot flashes increased from Letrozole. I can live with that. After a UTI and antibiotics, on 4/25, I started Verzenio, which caused diarrhea on day 3 that was helped by reg Imodium. Today is day 8 of Verzenio. I also take Zofran 30 minutes before, which mostly helps nausea, but still need MS Imodium to ease cramps that continue, and I just don't feel good. Guess what you all call fatigue is when I walk across the house, I'm out of breath, and must sit 5 min so I can continue. I thought it was dizziness from lack of normal food, as I had to limit many of my normal items. I've lost 4 lbs which is a bonus, but feeling crappy doesn't help. I ordered Multi-symptom Imodium which seems to be what everyone is using to assist with cramping. My stomach is seldom happy. I've avoided dairy, fast food (helps avoid cooking, but doesn't help tummy), and fiber (needed to avoid constipation). My biggest challenge is finding that balance. Think I'm going back to Metamucil and MS Imodium. Seems like diarrhea happens every other day, but minimal. I get 0 warning, and can't make it 4 feet to restroom. After many accidents, I decided to find a balance between these 2 to ease my mind and be comfortable. I am currently feeling confined to home. Don't know how you folks work every day! I commend you. Verzenio also can cause blood clots. I had a stroke in 2007, so I already take a baby aspirin daily for that. My neurologist feels that can also help avoid clots. I am concerned, but this is what I take, and if I stop Verzenio, I am looking at months, according to the ONC. I'm continuing. She said I'm Stage 3/4, and she has a patient that has had Stage 4 for 20 years, so that's hopeful. I sit mostly in my recliner under blankets. I haven't cooked or done anything. When I ask doc questions, she wants to see me, which is 60 min away, so I found you folks in the meantime. I'm not getting in the car until I have this controlled somewhat.
Mary in CA
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Hi @roxiea, it sounds like the side effects of your treatment are getting in the way of you being able to enjoy reasonable life quality, like being able to go out. Have you reached out to palliative care services to see if they might have any additional suggestions to help manage the nausea and diarrhea that you are struggling with? A few members have tried Enterade to help their nausea and have suggested it in our supportive Zoom meet-ups.
There is a reimbursement program, too, for Enterade that could make it more accessible since after a while it can add up over time.
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