Deciding whether to go on abemaciclib (brand name Verzenio)

Posted by slapshotmary @slapshotmary, Dec 27, 2021

Hi everyone and thank you for my membership. I was diagnosed with stage III breast cancer and just finished all my treatments which included 20 cycles of chemo, 6 weeks of radiation every day and since October 22 anastrozole. During my last visit my oncologist wanted to put me on abemaciclib; however, I looked at the research and I don't seem to fit the targeted group. My last mammogram was good. It was approved by the FDA in October 2021. Any suggestions? I do have severe asthma.

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Welcome, @slapshotmary.

"On October 12, 2021, the Food and Drug Administration (FDA) approved abemaciclib (Verzenio) in combination with endocrine therapy (either an aromatase inhibitor or tamoxifen) following surgery to treat some people with HR-positive, HER2-negative breast cancer. Under the approval, patients’ cancers must have spread to nearby lymph nodes and exhibit certain traits that make the cancer more likely to come back, including high levels of a protein called Ki-67." https://www.cancer.gov/news-events/cancer-currents-blog/2021/abemaciclib-early-stage-breast-cancer

Mary, are you HR-positive and HER2 negative?
PS: I love your username. Are you a hockey fan?

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Hi Colleen,

Thank you for responding. Yes, I am a huge hockey fan. I played hockey for many years and now I coach people with special needs from ages 4 to 55. I teach them how to skate before they do drills. I am HR positive and HER2 negative. My KI score was low and my surgeon said that my cancer was slow growing, I had a small tumor but it spread to four of ten lymph nodes she removed. I tried to ask my oncologist what was so special about me that warranted his decision to start me on abemaciclib. He just said it was another tool to put in my arsenal. I didn't think that was a good answer. I did some research (I told him this) and I didn't feel I was a candidate as I have asthma and the side effects were too many. I worried about the lung inflammation. My last mammogram was good. I had December 1 only 4 months after my chemo. I don't have early stage breast cancer with a high reoccurrence. I had 8 cycles of Doxorubicin+Cyclophosphamide, 12 cycles of Paciltaxel, and 5 weeks of radiation and a week of targeted radiation. I started anastrozole on October 22, 2021 with just joint and bone pain but Tylenol does the trick.

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I would hate to think you refused a treatment and ended up fighting something even worse. That being said, none of us want to deal with the side effects of an unnecessary treatment. I noticed you have started or commented on several conversations. Are you pursuing that second opinion?

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@auntieoakley

I would hate to think you refused a treatment and ended up fighting something even worse. That being said, none of us want to deal with the side effects of an unnecessary treatment. I noticed you have started or commented on several conversations. Are you pursuing that second opinion?

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I want to but I don't know how. I asked my surgeon in an email what she thought – just a few minutes ago. She knows my Ki-67 number and probably can answer some of my questions. I won't refuse treatment that I would benefit from. However, I want to make an informed decision not based on "it's another tool for your arsenal." I also asked my oncologist if he still met as a team to discuss patients and if they all came to the same decision; but he didn't answer that question. So I'm just wondering what to do. I'm trying to figure out if Stage IIIA is considered early or advanced breast cancer. I just don't know what the other traits are for taking this drug besides early stage breast cancer with HR pos and HER neg. I don't think I fit the trait of aggressive cancer or treatment that didn't work. I just need to know why I'm a candidate for a new drug that had only 5,600 people and 17% dropped out because of side effects. I will do what will help my survival rate but I need facts, it to be based on me and not be grouped. I also need for him to hear that I do have lung issues and that the radiation also has (although) rare inflammation of the lungs now until 6 months after the treatments. Phew, thank you for listening and helping me as I vent.

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Unfortunately with new treatments grouped information is all they have. A drug that has been around for eons has a lot of individual experience behind it, but that takes time and use. I do agree with informed decisions being the only good decisions. Are you near Mayo, or a teaching hospital, or a large cancer center? Do you have a primary care doctor?

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@auntieoakley

Unfortunately with new treatments grouped information is all they have. A drug that has been around for eons has a lot of individual experience behind it, but that takes time and use. I do agree with informed decisions being the only good decisions. Are you near Mayo, or a teaching hospital, or a large cancer center? Do you have a primary care doctor?

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I'm going to Rocky Mountain Cancer Center. I do have a primary doctor as well as my oncologist. I'm just surprised that my oncologist suggested it but really didn't give reasons why? He did say that it was showing good results for people like me but didn't get into what "people like me" are. Plus when I started researching it; it didn't seem to be for "people like me." I need to know what it is about me that makes me a good candidate. I thought I didn't have the traits they mentioned. So I asked to table it for 6 weeks so I can research it more; so we could have a deeper conversation. I do have severe asthma and the trial was so small. I'm not near Mayo, but there are many hospitals. I'm just wondering how to get a second opinion as I want to do the best I can for myself and not make a bad decision. I feel like they're throwing so many things at me without telling me the why? Thank you for replying.

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@slapshotmary

I'm going to Rocky Mountain Cancer Center. I do have a primary doctor as well as my oncologist. I'm just surprised that my oncologist suggested it but really didn't give reasons why? He did say that it was showing good results for people like me but didn't get into what "people like me" are. Plus when I started researching it; it didn't seem to be for "people like me." I need to know what it is about me that makes me a good candidate. I thought I didn't have the traits they mentioned. So I asked to table it for 6 weeks so I can research it more; so we could have a deeper conversation. I do have severe asthma and the trial was so small. I'm not near Mayo, but there are many hospitals. I'm just wondering how to get a second opinion as I want to do the best I can for myself and not make a bad decision. I feel like they're throwing so many things at me without telling me the why? Thank you for replying.

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Your question is very timely for me. I am one of the Mayo Connect people who reads the posts but has never commented. I am a Stage II breast cancer patient at Mayo Rochester. I was diagnosed at my yearly mammogram in November 2020. I had a lumpectomy and four lymph nodes, one positive, removed in January 2021. I had 25 radiation treatments and didn't need chemo based on my Oncotype score of 11. I started anastrozole in April, I've had very minimum side effects. I recently had my first mammogram since my diagnosis and all was good. I met with my oncologist after the mammogram and we talked about me starting Verzenio. I am a good candidate based on my KI-67 score of 24. We discussed all the pros and cons, the biggest con for me was the cost. I really didn't worry about the side effects because my out of pocket expense being so high per month I couldn't afford it and figured I wouldn't be taking it. I was referred to a Patient Coordinator at the Mayo Specialty Pharmacy who had me fill out an application to apply for Lilly Care. I heard from her yesterday and I was accepted for the program. Now I need to think about the side effects and like you they are daunting. I reached out to my oncologist right away and she has set me up for an appointment with a chemo nurse educator to answer all my questions. I'm still a little scared but I trust my oncologist and my entire team at Mayo so if they feel the drug is a good fit for me then I will try it.

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Thank you so much for sharing your story. I'm not sure what I already told you that my Ki-67 was 2%. I asked my surgeon and oncologist to let me know my Ki-67 number. I tried to read about Ki-67 and everything I read was too scientific for me to understand. I do know that my surgeon said it was low and slow growing. I read the research and it did say that cancer patients with early breast cancer and a high recurrence (aggressive) plus other traits are a good candidate. I wrote in my portal and asked my doctor if I had a Oncotype DX score and if I didn't could I get one. I never heard of it before until I researched it. The only traits I see myself having is that I'm early breast cancer (Stage IIIa) with HR pos and HER neg. I read that early breast cancer is Stage I to stage IIIA. The research listed those requirements plus additional traits including the Ki-67 number. If mine is low, then I'm assuming I shouldn't take it. Please if you don't mind sharing, could you tell me what you learn? I agree that if your team says you're a good fit then you should try it. I'm looking to do the same. You are so lucky to be with Mayo. They are the best! I just need more information and match it with the research. My concern with this drug is that 5,600 people is not that much and 17% dropped out. The lung clots and inflammation as I have a lung disease is very scary. At the beginning, I told my doctor to do whatever it takes to make me live longer and I also said I didn't want to know all the information. But this drug seems too new. Since I don't really know much about my cancer I need more information to make an informed decision. When I went into his office I thought I would only being taking the anastrozole and then he wanted to add this drug. Again, I'm so glad I joined this group. I so appreciate all the people that are replying to my concerns.

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Thank you for sharing your story @beeme, being at Mayo brings a certain amount of confidence in your plan. I think Mayo doctors are just better at answering all your question as well. When are you scheduled for your chemo nurse appointment? Can you share more of your story?
@slaslapshotmary the reason I asked about your primary care is because this is how we got the second opinion for my husband. We asked our primary to send him to refer him to Mayo for the second opinion.
The university of Colorado is a teaching hospital, that might be a good place for a second opinion, are you familiar with them?

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@slapshotmary

Thank you so much for sharing your story. I'm not sure what I already told you that my Ki-67 was 2%. I asked my surgeon and oncologist to let me know my Ki-67 number. I tried to read about Ki-67 and everything I read was too scientific for me to understand. I do know that my surgeon said it was low and slow growing. I read the research and it did say that cancer patients with early breast cancer and a high recurrence (aggressive) plus other traits are a good candidate. I wrote in my portal and asked my doctor if I had a Oncotype DX score and if I didn't could I get one. I never heard of it before until I researched it. The only traits I see myself having is that I'm early breast cancer (Stage IIIa) with HR pos and HER neg. I read that early breast cancer is Stage I to stage IIIA. The research listed those requirements plus additional traits including the Ki-67 number. If mine is low, then I'm assuming I shouldn't take it. Please if you don't mind sharing, could you tell me what you learn? I agree that if your team says you're a good fit then you should try it. I'm looking to do the same. You are so lucky to be with Mayo. They are the best! I just need more information and match it with the research. My concern with this drug is that 5,600 people is not that much and 17% dropped out. The lung clots and inflammation as I have a lung disease is very scary. At the beginning, I told my doctor to do whatever it takes to make me live longer and I also said I didn't want to know all the information. But this drug seems too new. Since I don't really know much about my cancer I need more information to make an informed decision. When I went into his office I thought I would only being taking the anastrozole and then he wanted to add this drug. Again, I'm so glad I joined this group. I so appreciate all the people that are replying to my concerns.

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Hi @slapshotmary thanks for reaching out. This is all happening so fast for me. I agree the numbers for this drug are not the best so I wasn't too concerned if I couldn't take it because of the cost. But I'm being presented an opportunity to try it and my oncologist thinks it's a good idea so I'm willing to try. I have a lot of drug allergies and other health conditions that might impact my tolerance for the drug. But I won't know unless I try it. I was also really worried about anastrozole after reading about all the side effects but I have been so fortunate not to have anything major. I'm in my mid 70's so a lot of my decisions are different then they would be if I was younger. I'm also ER and PR positive which is new for this drug. I'll share what I learn from the Chemo nurse.

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@auntieoakley

Thank you for sharing your story @beeme, being at Mayo brings a certain amount of confidence in your plan. I think Mayo doctors are just better at answering all your question as well. When are you scheduled for your chemo nurse appointment? Can you share more of your story?
@slaslapshotmary the reason I asked about your primary care is because this is how we got the second opinion for my husband. We asked our primary to send him to refer him to Mayo for the second opinion.
The university of Colorado is a teaching hospital, that might be a good place for a second opinion, are you familiar with them?

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Thank you @auntieoakley, I feel like I know you reading your comments this last year. I admire your common sense answers and your knowledge of our shared condition. My story is pretty simple my husband and I have been going to Mayo for over 20 years. He has had 3 cancers, bladder, right kidney and left kidney diagnosed and caught early and treated at Rochester. We go every year for our check ups and 2020 was my year to be diagnosed with cancer. I was diagnosed with Stage II, one node positive, ER and PR positive breast cancer. But it was during covid so the breast clinic was down three surgeons so no surgeries till Feb or March, this was December. I reached out to the U of MN and met and a surgeon who I was very impressed with. Basically Mayo was my second opinion. In one afternoon in late December I met with the surgeon and her team, the oncologist and hers and the radiologist and his team. They were all wonderful but no surgery appointments were available. Amazingly a appointment was found for early January. I picked Mayo over the U of MN mainly because they were going to work with my allergist to find antibiotics and other meds I could tolerate. Through out my cancer journey I have been blessed and feel I made the right choice. All three of my doctors have been pretty wonderful.

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@auntieoakley

Thank you for sharing your story @beeme, being at Mayo brings a certain amount of confidence in your plan. I think Mayo doctors are just better at answering all your question as well. When are you scheduled for your chemo nurse appointment? Can you share more of your story?
@slaslapshotmary the reason I asked about your primary care is because this is how we got the second opinion for my husband. We asked our primary to send him to refer him to Mayo for the second opinion.
The university of Colorado is a teaching hospital, that might be a good place for a second opinion, are you familiar with them?

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Thank you for this note. I do not know about University of Colorado but I will reach out to them. I wrote to my primary doctor for her professional opinion but she deferred to my oncologist. I will write her again to ask for a second opinion. You have been very helpful.

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