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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@lynelyn

Thank you for sharing your experience. I’m only two days into my initial dose set. It’s good to hear how you managed the side effects. I’m still adjusting to the idea of ongoing treatment, but am so thankful it’s available!

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@lynelyn Good luck. Stay in touch and let us know how you are doing. I should have mentioned the importance of exercise and drinking lots of water. You got this girl!!

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@lynelyn

Thank you for sharing your experience. I’m only two days into my initial dose set. It’s good to hear how you managed the side effects. I’m still adjusting to the idea of ongoing treatment, but am so thankful it’s available!

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@lynelyn, you may also be interested in the 2 related discussions:
- Abemaciclib (Verzenio) and fulvestrant (Falsodex) Treatment https://connect.mayoclinic.org/discussion/abemaciclib-and-falsodex-treatment/
- Deciding whether to go on abemaciclib (brand name Verzenio) https://connect.mayoclinic.org/discussion/hi-and-a-question-about-abemaciclib-brand-name-verzenio/

How are you doing?

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@colleenyoung

@lynelyn, you may also be interested in the 2 related discussions:
- Abemaciclib (Verzenio) and fulvestrant (Falsodex) Treatment https://connect.mayoclinic.org/discussion/abemaciclib-and-falsodex-treatment/
- Deciding whether to go on abemaciclib (brand name Verzenio) https://connect.mayoclinic.org/discussion/hi-and-a-question-about-abemaciclib-brand-name-verzenio/

How are you doing?

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Thank you, these threads are right on topic. I’m past day 9. Symptoms started day 4, but spacing meals and meds is working well.

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I have a heterogeneous tumor that contains triple negative with Ki-67 of 98% and ER+, Pr-, HER2 double equivocal with Ki-67of 90%. Original tumor was 3cm and no lymph node involvement. The chest CT at diagnosis showed some “suspicious” subpectoral nodes but not technically enlarged. I completed 11 Taxol/Carboplatin and had to stop due to low platelets. At surgery had complete pathological response and still nodes were negative. I will continue Keytruda for a year, and my oncologist is thinking about Verzenio. I am not sure I qualify for Verzenio with no node involvement and I’m terrified of having Keytruda and Verzenio at the same time. Any recommendations or suggestions?

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@nana2020

I have a heterogeneous tumor that contains triple negative with Ki-67 of 98% and ER+, Pr-, HER2 double equivocal with Ki-67of 90%. Original tumor was 3cm and no lymph node involvement. The chest CT at diagnosis showed some “suspicious” subpectoral nodes but not technically enlarged. I completed 11 Taxol/Carboplatin and had to stop due to low platelets. At surgery had complete pathological response and still nodes were negative. I will continue Keytruda for a year, and my oncologist is thinking about Verzenio. I am not sure I qualify for Verzenio with no node involvement and I’m terrified of having Keytruda and Verzenio at the same time. Any recommendations or suggestions?

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@nana2020, your situation and questions sounds very similar to questions fellow members @lynelyn and @slapshotmary asked in this related discussion:
- Deciding whether to go on abemaciclib (brand name Verzenio) https://connect.mayoclinic.org/discussion/hi-and-a-question-about-abemaciclib-brand-name-verzenio/

I moved your message to the discussion so you can easily connect with Lyne and Mary as well as with @beeme @mhsosa @eku @pharmonc88 @keepmoving2 who have experience with abemaciclib (Verzenio).

Nana, what particularly concerned you about the Verzenio and Keytruda combination?

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I was diagnosed with early breast cancer, Stage II Er,PR +, HER2- , nodal positive 3 of 8 ( one positive node was located in the tumor ( intramammary). I had two tumors and two favorable ONCOTYPE results 14 and 20 that allowed me to avoid chemo. I had a unilateral mastectomy with reconstruction in February and completed exchange surgery in July. I have been taking Anastrozole for 5.5 months with no obvious side effects other than possible hair thinning.

My 5⭐️oncologist, with whom I have had a three year relationship ( previous experience of early colon cancer) has left due to an insulting offer on renewal contract , NEVER mentioned Verzenio. She started me on the AI. This new oncologist threw Verzenio out at me at the tail end of my first visit and after reading about it, I was very alarmed. My KI is 22 ( just over the line) which qualifies me despite not having MBC. Now I’m trying to assess benefit/risk options. This drug has incredibly scary side effects. It’s only 1 year since FDA approved for non MBC profiles. IMO the statistics don’t look great and I realize it’s early. Still 17% drop out rate due to intolerance… about 850 participants!

I have made an appointment with a second oncologist, early November, and I’ll see if it’s considered. In the meantime I would be interested in hearing from those of us who are considering this med, from those who are taking it and especially ANY points of view learned from your health team; pros and cons!

Thank you.

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@colleenyoung

@nana2020, your situation and questions sounds very similar to questions fellow members @lynelyn and @slapshotmary asked in this related discussion:
- Deciding whether to go on abemaciclib (brand name Verzenio) https://connect.mayoclinic.org/discussion/hi-and-a-question-about-abemaciclib-brand-name-verzenio/

I moved your message to the discussion so you can easily connect with Lyne and Mary as well as with @beeme @mhsosa @eku @pharmonc88 @keepmoving2 who have experience with abemaciclib (Verzenio).

Nana, what particularly concerned you about the Verzenio and Keytruda combination?

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Both cause diarrhea and I am not sure my body can handle it. Also not sure I need Verzenio since I am node negative.

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@beeme

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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I think that as this med is now approved for non MBC profiles we are going to hear more about it and concerns also. Another big decision coming our way. Please let us know what you learn. Thank you. So appreciate this forum so we can learn from each other. 🌸

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@anjalima

I think that as this med is now approved for non MBC profiles we are going to hear more about it and concerns also. Another big decision coming our way. Please let us know what you learn. Thank you. So appreciate this forum so we can learn from each other. 🌸

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In February 2022 I started taking Verzenio, a 150 mg tablet twice a day. I was on that dosage for thirty days. I kept a daily diary of how I felt and the issues I had. Lots of intestinal problems. I alternated with diarrhea and constipation and had terrible stomach aches. A return of acid reflux which had been under control for years, my nasal allergies got really bad, plus nose bleeds. I was tired all the time and no ambition to do anything. Thank goodness for my team at Mayo, they were always available to answer any questions and offer solutions. After the 30 days it was decided I should reduce my dosage from 150 mg twice a day to 100 mg twice a day. After 12 days with no Verzenio I started on the new dosage. After the first 100 mg pill I developed a rash on my chest, neck and stomach by the afternoon it went away. That evening my heart started racing but stopped and seemed normal. The second day after lunch my stomach started really hurting. By three I was producing a large amount of mucus like I was having a major allergic reaction and started running a fever of almost 101 with chills and extremely fatigued. That third pill was my last, I was told to stop the Verzenio. It was a good decision, it took a few months for my heart to stop having the palpitations and my GI tract to get back to normal. I was disappointed I couldn't continue it, I think it was a good drug to try, I'm not sorry I did. Right now my health is fine, I just had a bone scan and mammogram which were both good. I continue to take Anastrozle with no side effects. I'm grateful for that, my supportive family, my Mayo team and the fact that I am alive with a good quality of life.

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@beeme

In February 2022 I started taking Verzenio, a 150 mg tablet twice a day. I was on that dosage for thirty days. I kept a daily diary of how I felt and the issues I had. Lots of intestinal problems. I alternated with diarrhea and constipation and had terrible stomach aches. A return of acid reflux which had been under control for years, my nasal allergies got really bad, plus nose bleeds. I was tired all the time and no ambition to do anything. Thank goodness for my team at Mayo, they were always available to answer any questions and offer solutions. After the 30 days it was decided I should reduce my dosage from 150 mg twice a day to 100 mg twice a day. After 12 days with no Verzenio I started on the new dosage. After the first 100 mg pill I developed a rash on my chest, neck and stomach by the afternoon it went away. That evening my heart started racing but stopped and seemed normal. The second day after lunch my stomach started really hurting. By three I was producing a large amount of mucus like I was having a major allergic reaction and started running a fever of almost 101 with chills and extremely fatigued. That third pill was my last, I was told to stop the Verzenio. It was a good decision, it took a few months for my heart to stop having the palpitations and my GI tract to get back to normal. I was disappointed I couldn't continue it, I think it was a good drug to try, I'm not sorry I did. Right now my health is fine, I just had a bone scan and mammogram which were both good. I continue to take Anastrozle with no side effects. I'm grateful for that, my supportive family, my Mayo team and the fact that I am alive with a good quality of life.

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Beeme~ I’m so sorry for all that you went through with the best of intentions… our choices are truly difficult and at times not possible to carry through.

Good for you and your family and health team that you worked together and now you are enjoying your return to good health.

I’m tolerating the Anastrozole very well also. I think staying on this is a good path for me right now.

Thank you for sharing your story. 🌸

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