Abemaciclib Verzenio for All Stages
I've noticed there is a Verzenio discussion in the Stage IV only section, and another in the Stage III forum. I'm starting this thread because I think there could be a benefit from sharing between all the stages - especially when, and if, Verzenio becomes a more common standard of treatment.
I started Verzenio 14 months ago. I had a couple of large tumors, plus lots of smaller ones in my liver, and then they found a little (15mm) tumor in one breast. After 7 months on Verzenio (150mg x2) and anastrozole, I was NED (by PET-CT).
I've had a little low RBC and WBC, but nothing that required a break in treatment.
The SEs were not fun - extreme fatigue, food aversion, and of course, diarrhea - but the results are well worth it IMHO. A few months later , I requested a dose reduction (100mg x 2), because the big D was becoming more of a problem. While I still have fatigue, I feel much better and the D is manageable again.
In the interest of keeping the discussion friendly, I do request that there be zero political comments and COVID discussion limited to the impacts between COVID and Verzenio. Thanks.
SeeQ
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hello all! I just got insurance approval to begin Verzenio. I am taking anastrazole and Claritin daily (for year round allergies). My MO wants me to start at 200mg twice a day - I have a question into her as to why so high? Even the Eli Lilly website says 150mg twice a day is the standard dose. Wondering that dose everyone started at? My tumor was 6cm, 2 + nodes, grade 3, stage 3A. I'm so excited to know there are more treatment options. I have Crohn's disease, so diarrhea isn't something new, although I have been in deep remission for over 25 years.
Julie
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Hello. I am new here. My Oncologist is recommending I start Verzenio . I am actually in remission at this time. However, my cancer was very aggressive. After AC&T, the tumor shrunk but it did nothing to the cancer cells in my lymph nodes (left side) and therefore had all removed. 17 of 28 still had cells in them. She said they are using Verzenio on patients with my type of cancer even though I had a clear mammogram last week. I was very sick through the chemo and had every side effect known, even toe nails falling off. I was out of work for almost a year and luckily had LTD to help me get through. I am concerned about the side effects of Verzenio especially with the stomach. I know everyone reacts differently. She said she would start me out at 100 mg twice a day to see how I react and can stop it if it's too much. I was wondering if anyone had a problem with working while on it? I hear the D is the worst part but also read about GI issues. I am also on Arimidex, Allegra an Nexium and have recently developed lymphedema and am getting fitted for a sleeve. She is also recommending Prolia because of the Arimidex. Early stage of Osteopenia . Somehow I don't feel like I am in remission with all of these meds. I know I am luckier than a lot of people but it can really get you down sometimes.
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Is there any data out there that shows how much benefit people who are less than stage IV would get from taking this drug? Sometimes these benefits are as low as 2% and it does give reason to doubt, given all the side effects.
My oncologist wanted me to take Xeloda during radiation and I declined. I am highly ER/PR positive and all the data I saw said it can really help ER/PR- but only has about 3% benefit for ERPR+. I know many women in my situation still opt to take it just to cover all their bases, but it does require weighing just how much benefit a person would get vs the side effects. If I'd been triple negative, I wouldn't have taken it in a heart beat. I also told the oncologist that I might be willing to give it a try before or after the radiation, but not during, because I read that taking chemo during radiation can really enhance and increase the bad side effects of radiation. She pulled up the data and saw how little benefit there is for ER/PR+ and agreed with me that it wasn't much. She's never brought it up again.
So now they have Verzenio. Just how much benefit does it offer the different types of breast cancer and those who are not stage IV? I also wonder just how many of these drugs we can use in lower stages, and then not have many options left if we become stage IV? If some of us used Verzenio and Xeloda now, would those drugs still be available again if the cancer progresses?
I try not to be super negative about all of this, but it's hard to not think that there is a lot of drug pushing for profit going on in this business. And re side effects vs quality of life, just how much is a person supposed to take?
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ThreeTree, This link is from the National Cancer Institute at cancer.gov from January of this year. I've provided the text URL to cut and paste, in case you'd prefer that over a hyperlink (if it works).
Trial Tests Abemaciclib As New Option for Early-Stage Breast Cancer
https://www.cancer.gov/news-events/cancer-currents...
"...most of the time the cancer is classified as HR positive and HER2 negative. Although the available therapies for this type of breast cancer are very effective, a portion of patients are at particularly high risk of their cancer returning, or relapsing, in the years following treatment.
The new findings from the study—a clinical trial called monarchE—suggest that for people at high risk of relapse, adding abemaciclib to their treatment regimen may decrease the chances of their cancer coming back.
Participants in the trial who received abemaciclib for 2 years along with standard postsurgical, or adjuvant, hormone therapy were about 30% less likely to have their cancer come back in an invasive form than participants who received the standard adjuvant hormone therapy alone."
(edited to clarify the source)
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I will be re-starting Verzenio in a few days, at a reduced dose (100 mg 2x/day). I was originally on 150 mg 2x/day but had issues with low WBCs and had to take a break (then had a root canal). I did experience fatigue, stomach pain and occassional diarrhea. I am on the fence about continuing (I feel so good during my break from it!), so we will see how I fare with the lower dose.
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SeeQ - Thanks very much for the reference. I'll take a look at it.
I am really bad with statistics and don't always get the "real" translation of it all. My oncologist said that Letrozole would lower my risk of a recurrence by 30-40%. However, when I put my stats into the Predict calculator it showed only a about a 5% benefit at about 10 years, from taking it for 5 years. That seems to be very different from what the oncologist said in "real" terms.
If Verzenio also lowered risk of recurrence by about 30%, what would that translate to in something like the Predict calculator? Also, is this on top of the 30-40% risk reduction of Letrozole or in addition to, etc.? It gets real confusing to me.
My oncologist told me that I was a high risk for a recurrence. I'm supposed to see her in a week or so, and after reading the above posts, I'm getting concerned that she is going to try to push Verzenio on me now, and it doesn't sound like I'd be crazy about taking it.
I also still have reservations about using up all these drugs in lower stages, since I have not seen anything about whether they would still be viable and effective if a person reaches a later stage and has already used them. Don't we need to keep some of these things in the arsenal for down the road "just in case"?
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SeeQ - Just read the article and once again thank you very much. It was very informative. It actually underscored my concern that this is all too premature for my tastes. I think they need to wait for a lot more follow-up data before they go giving it routinely to lower stages, even if they are "high risk".
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thank you for sharing the article. What I interpret is that the med may delay recurrence in certain situations. It's up to each individual patient to discuss with their MO. For me, I am considered early advanced and have a higher risk for recurrence due to the tumor size, grade, lymph node involvement and high percentage of Ki67 protein. I'm looking forward to trying it. I have wondered why treatments haven't gotten much different over the last 30 years. My aunt had DCIS in the 1980's and she had the same treatment plan as me in 2020! The pre-meds for chemo have gotten better, but the 5 and 10 yr survival rates are similar to what they were when she was diagnosed. I feel like early diagnosis has gotten better, but long term survival hasnt
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Just wanted to add a corrective note to something I said above. I realized after I typed it that the Predict 5% is relating to overall survival, i.e. the Letrozole supposedly gives me a 5% more likelihood of being around in 10 years, whereas the oncologist's comment about a 30% risk reduction, I believe refers to recurrences, not overall survival years. I think I might have been comparing apples to oranges. It still doesn't make sense to me.
Would the Verzenio 30% reduction be in addition to or alongside that of the AI treatment. The article says the Verzenio group got 30% benefit, but that it was about the same as the "just AI" group. So is there really any true benefit beyond that conferred by the AI?
None the less, Verzenio would definitely be an individual decision of course, but to me, the data really seems awfully rough and premature at this point.
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ThreeTree - I'm not very good with stats, either. I just see the part that says nearly 30% risk reduction with abemaciclib and that seems to be comparing it to the group on standard treatment. For me, I'm all for anything that increases PFS and OS and maintains decent quality of life. I think your perception of what is considered decent evolves over time.
I don't know what the Predict calculator is. I'm assuming that may be because I was diagnosed de novo Stage IV. As far as the calculators for the risk of getting bc in the first place, I score very low, so go figure. It was a big shock for everyone.
Jujumar- you're right. Survival rates aren't changing enough. The rhetoric and funding need to change from awareness (unless you're living under a rock, you're probably aware) and early detection (again...duh) to an actual cure.
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I agree 100% re the need for a big change in treatment research, etc. Find something that kills cancer, and quit spending the money on "awareness" and band aid solutions that have horrible side effects; just find away to kill those cells for good!
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here's my dilemma ladies,
My script for Verzenio is ready. Doc did change the pills to 150mg twice a day. My husband and I have a 5 day trip to Las Vegas Nov 5-10. I'm tempted to wait to start this med til I am back home just in case the diarrhea is bad. Or do I start it now and get 3 weeks of med into my system? MO is ok with me waiting. I just have had so many delays with my cancer treatment. But a few weeks should still be ok at this point.
Julie
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I've just started Verzenio and the D has hit me today at day 10. I don't have any answers, everybody's probably different. I've had the opposite problem all year because I have spinal cord damage. Anyway I think I will wear a diaper if I have to and do what I want, not live by the toilet...I hope it hammers the bone mets so it doesn't eat more spine bones and ribs. I hope it doesn't tank my white count as bad as the Ibrance. I welcome advice from anyone who has dealt with it for a while.
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If it was me, I think I'd wait - especially if the oncologist was OK with it. I'm sure many would not wait though, so of course you have to do what is comfortable for you. Re the diaper suggestion above. It would be convenient in many ways, but they do get smelly in public, just sayin'.
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No they can't smell me, the whole town has COVID!
Walk with my husband and blame it on him.
Borrow a nephew and blame the baby.
The public can't smell me anyway, they are all vaping pot.
Blame the sugar beet factory (our valley already stinks).
It would help me get first in line at the grocery store.
It would empty the restaurant.
Sink plug? Great stuff foam? Box of tampons? Maybe I'll carry my camp bucket with me. If it gets worse I'll try Imodium I guess, but I've spent most of the year constipated and anything that makes me tired makes my hobble walking even worse.
Yeah this would be hard to deal with on a road trip.
This stinks.
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MKestrel- you might try using immodium prophylactically. I found, when I was on 150x2, two a day was too much, one a day not quite enough. My MO suggested liquid immodium might be easier to adjust the dosage amount (e.g. 1.25 or 1.75 dose). I learned to use the immodium plus, or add Gas-X with regular immodium to help with cramping (most of the time). Since my dose reduction, one immodium in advance will usually control it for a day or two.
Also, some people don't have any problem with D, for some it's short-lived. (Usually starts between day 6 or 8, according to the literature).
Also, many people found some measure of relief by adding daily Metamucil (any form (liquid, capsules, etc) or Fibercon ‐ psyllium husk, because it absorbs liquid in your system. Adjust the frequency and amount to suit your needs.
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Thank you SeeQ, I hope your input will help my output.
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MKestrel - Lol re the reasons why you won't be smelling! Loved the list.
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I'm a bit confused now about where best to post....at the "Abemaciclib Verzenio Stage IV/Metastatic Beast Cancer ONLY" forum....or this new forum that was recently started "Abemaciclib Verzenio All Stages". I do know that when I first started visiting the Stage IV ONLY forum, I very much appreciated the long post by zarovka (from January 1, 2018) with all the details on Verzenio written Constantine Kaniklidis that headed every page. The information by Constantine Kanklidis is invaluable and worth preserving.
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WenInWI - feel free to post in either place. While I think everyone is welcome to read both threads, only Stage IV are invited to post in the Stage IV forum - and I think some will not read in the Stage IV forum. I started this thread as a place for us all to ask questions and contribute. Since Stage IV has been using this drug longer, we may have experience to share that would be helpful to other stages, and everyone's experience is valuable.
Do you think I should edit the original post to clarify?
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SeeQ....I prefer just one location to post, but understand your rationale. My comment about the importance of the information written by Constantine Kanklidis holds though. I relied heavily on his information. Not sure how best to make his information available to the users of the new forum, short of having it post at the top of every page.
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I'd like to share what has finally worked the best for me dietarily with regard to controlling side effects from Verzenio. On the suggestion of another recent poster I have been following a low FODMAP diet. This has reduced my intermittent stomach pain to almost never/none and it has also reduced epsodies of loose stools (I still use imodium). I never had any problems with high FODMAP foods before starting Verzenio, but clearly do now. It's an easy diet to understand with lots of info available on line. When I want to know if a specific food is high or low FODMAP I just type in the food name + FODMAP and the answer comes up immediately. There is also an app that can be downloaded. Some of my favorite foods are now off limits (ex: apples) but there are many other tasty safe foods (ex: blueberries). The best bread product I've found is sourdough spelt flour bread made by Berlin Bakery. If not avialable locally, they will ship.
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I am back on Verzenio after a few weeks' break and a dosage change down to 100 mg twice a day. Other than a few bouts of diarrhea, I'm doing well at the one week point. I will be going Monday to have my blood checked. Hoping that it resolves the low WBC issue and I can continue.
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i’m a first time poster . Diagnosed in 2015 with ILC stage 3 with 1/12 lymph nodes involved and large tumor. Considered early stage high risk and worried about recurrence. Ive been on letrozole for 5 years .
I am interested in the new Verzenio approval for high risk breast cancer . I discussed the drug as with my oncologist . Her take is that I am not a candidate because I am not recently post surgery as were the Monarch trial candidates .
.I had a double mastectomy in fall of 2015 , followed by chemo and radiation.
Has anyone here who is high risk and years out from surgery been approved for Verzenio ? If so , did you need to take a BCI test or circulating tumor cell test in order to be approved ?Thanks
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Anemome2- I'm sorry I don't know the answer, but I didn't want your post to go without a response. You might try asking the same question in the thread about the FDA approval announcement- which also has detailed information about the approval and dosing recommendations. I put the link to that thread at the bottom of this post.
My thought is some of our members that are great researchers - or that have more medical knowledge or experience - may see the question there and respond. I'm not sure why timing of the surgery is relevant, but what do I know.
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@ anemome2
If I understand correctly you are six years post diagnosis, had full treatment and have no evidence of disease. Verzenio hasn’t been tested to prove any benefit several years past initial treatment, they have no data yet to show.
Also, just want to mention that 30% risk reduction basically means if taken together with endocrine therapy (AI) two years later about 92.2% have no evidence of disease vs 88.7% of those who took only the endocrine therapy.
There’s nothing currently to show this drug would benefit you anyhow but there’s plenty of evidence showing it’s likely side effects.
I am not a researcher and just did a quick browsing of some published research summaries. Obviously this is a good question to discuss with your oncologist who knows your case.
Best
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Well, there you go. I knew someone would have a better answer! Being diagnosed de novo, I just don't have the thought processing for adjuvent treatments. Thanks for chiming in muska.
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I talked to my oncologist yesterday, she wants me to consider taking abemaciclib on top of AI (+ovarian suppression) based on the recent approval for adjuvent therapy in early stage BC. I wouldn't start for a couple months, until after radiation, so I have some time to decide. It's tough..... looks like there is benefit at the 2 year mark, but one of the palbo trials in early BC also showed benefit at 2 years, and that benefit vanished by the 4 year read out. Won't know if abemaciclib has the same trend for another couple years. So..... possibly real benefit, possibly not, but definitely real side effects. Anyway, I will be interested to hear what other people with Stage II decide.
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mle42,
According to my Oncologist, the benefit is still there at the 3 year mark (one year after stopping the medication), so that's encouraging. He said that if the recent follow-up had not shown that the gains were maintained, he would have taken me off of it.
My thinking has always been that I will give it a try and if the side effects become too much, I'll go off of it. There's something to be said about trying everything you can to keep this beast from coming back. That said, I am doing well on the reduced dose of 100 mg twice a day. I had bloodwork done at the two week point and everything looked good so far. It is a personal choice, but I'd advise you to give it a try. The first month wasn't great, but now (other than some occasional diarrhea), I feel 100% normal. I am also taking Letrazole.
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Juju-mar and M-kestral....this is a little late so maybe past the time of being useful re Verzenio and D. I also paused before starting Verzenio because of a trip and would do it again both for D and because V reduces my wbc and I don't want to travel without a working immune system.
Regarding everyday D-management, I have after some experimenting had pretty good luck with Meta Mucil. I take the capsules because they are just psyllium husk....no added sugar, aspartame or flavor like the powders have. I started with 2 capsules twice a day and that wasn't enough to have much effect...my episodes of D which started at every 9 days quickly went to every 6 and then every 3. After a brief break from V because of a trip, I tried again taking 4-5 capsules twice a day and that has been pretty effective if I remember to take both doses every day. I take it at lunch and dinner so the doses of Meta Mucil are safely at least 2 hours away from when I take Verzenio and letrozole. Hope this helps.
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