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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I'm trying to decide on verzenio also. My diagnosis is HER2 negative HR positive, 2 lymph nodes involved, Ki67 2%, oncotype 6 with 2% recurrence, tumor was 5.1 cm, I had a lumpectomy and re-excision to get clear margins. I just finished 30 rounds of radiation. I'm starting letrozole tomorrow. I am wondering if I really need abemaciclib too.

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I decided not to take it. Because they didn’t offer it to me in beginning so didn’t think I needed to take it now. I wanted quality of life and not have all those side effects.
I have been on anastolze for 2 years with mammogram and mri every 6 months. All scans have been no evidence. So that confirms my thoughts for me. No cancer seen so what are you killing off. This is my journey I’m taking. I’m 60 years young. And I’m pretty good health. Been losing weight which I think is helpful. Keep us posted on your progress. We are fighters

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My Doc wants me to go on Verzenio +Fluvestrant injections. It seems there are various protoclols with Verzenio.
I had a mastectomy and chemo 32 years ago with my breast cancer at age 43. Now I have a "recurrence" of that within the chest wall. It's pretty inaccessible, so the Doc wants to use these 2 meds to shrink the tumor, & make it easier to remove later. I've already tried 4.5 months of Aromatase Inhibitors, but it just gave me really high blood pressure even with BP drugs. I don't like the sound of the potential side effects and am going to see a Cardiac Oncology Doc to keep an eye on my heart. I hope it works. You do have to be careful of infections. Maybe you've seen this, but here's a site where they discuss the many uses of Verzenio: https://verzenio.lilly.com/metastatic-breast-cancer/treatment/plus-fulvestrant#effectiveness

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I've decided not to take abemaciclib. Everything I know about my diagnosis in the pathology reports and the oncotype results show I'm low risk. I will be starting letrozole this week which is daunting itself. That one makes more sense for my situation though so I'll give it a chance. 🙏🤞

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Profile picture for jardinera25 @jardinera25

My Doc wants me to go on Verzenio +Fluvestrant injections. It seems there are various protoclols with Verzenio.
I had a mastectomy and chemo 32 years ago with my breast cancer at age 43. Now I have a "recurrence" of that within the chest wall. It's pretty inaccessible, so the Doc wants to use these 2 meds to shrink the tumor, & make it easier to remove later. I've already tried 4.5 months of Aromatase Inhibitors, but it just gave me really high blood pressure even with BP drugs. I don't like the sound of the potential side effects and am going to see a Cardiac Oncology Doc to keep an eye on my heart. I hope it works. You do have to be careful of infections. Maybe you've seen this, but here's a site where they discuss the many uses of Verzenio: https://verzenio.lilly.com/metastatic-breast-cancer/treatment/plus-fulvestrant#effectiveness

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I didn’t not to take it either too many side effects and possibly of heart issue and infections along the way. I am anastrozole for 5-7 years mine was stage 2. Oncotype 20 and ki67 10. Which I believe is low risks. I was 59 at the time of breast cancer. I didn’t need chemo before my surgery mine was 3.4 with 1 lymph positive. Estrogen and progesterone are on the high end above 80 on the both. Had surgery and with reconstruction directly after my lump removal. Surgery went well with good margins. So no chemo for me.

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You have described my symptoms - very similar. Little less than 4 weeks on Versenio 150MG twice a day. I am 73 very healthy woman with breast cancer reoccurrence after 30 years (previous mastectomy/tamoxifen) - found a lump under my arm which was the breast cancer returned in the lymph node stage 3, estrogen positive. Refused Chemo due to my age, started on Antrolosa in April 2024 to shrink the cancer, which it did with limited side affects. Had surgery and they removed 27 lymph nodes/11 were cancerous. Then had 16 treatments of radiation as mop up. Recovered nicely from surgery/radiation - then oncologists determined I should take one of CDK 4/6 and continue to take Antrolosa. I elected to take Verenio since was a two year regime instead of three. I thought I was tough enough to handle but Versenio crushed me with headaches, fatigue, indigestion that included diarrhea and constipation, horrible lower stomach pains that moved from the front to the back - often could not stand straight, felt faint, unable to sleep due to the stomach pain - the mental fog was completely surprising and was delipating - have never been so depressed and unable to function. Even friends said I was an altered person they had a hard time recognizing. Two days ago stopped the Verenio - they are suggesting one week off then they will lower the MG - frankly after two days off the symptoms and fog clearing I am inclines to say NO to any CDK 4/5 drug. Even if this drug provides a better chance of stopping a reoccurrence, feel life is not worth living feeling even if symptoms reduced - simply no quality of life which was my primary reason from rejecting Chemo - this is chemo in pill form and very difficult to tolerate at my age. Would appreciate any information - so distressed thinking about going back on a lower dose of Verenio.

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I had a recurrence to the chest wall shortly after single mastectomy. Went from stage 2 to 3B. 1 lymph node positive. Ki67 of 41%. Oncotype 23. Max Chemo to shrink tumor. 2re-excision surgeries due to bad margins. Max radiation to chest wall with a boost. On letrozole (brings the cancer down by 50% which in my case is an absolute value of 35%) and recently finished 2 years of verzenio (which is an absolute value of 7%). With zoldronic acid which takes of 3% I went from a 70% chance of stage 4 to a 25% chance. I am really glad I took this medication which is the biggest breakthrough in breast cancer treatment in 20 years. It is showing results that last even when you finish taking the meds. With me the symptoms were a breeze. The worst was diarrhea at the beginning which went away after a few weeks. This was replaced be constipation/watery stool. I am now taking magnesium citrate supplement from Costco and this has all stopped. I also had neutropenia and hair thinning. But these were all minor inconveniences given the immense survival benefit. If this medication is free I would give it a chance.

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Profile picture for aubreybill @aubreybill

You have described my symptoms - very similar. Little less than 4 weeks on Versenio 150MG twice a day. I am 73 very healthy woman with breast cancer reoccurrence after 30 years (previous mastectomy/tamoxifen) - found a lump under my arm which was the breast cancer returned in the lymph node stage 3, estrogen positive. Refused Chemo due to my age, started on Antrolosa in April 2024 to shrink the cancer, which it did with limited side affects. Had surgery and they removed 27 lymph nodes/11 were cancerous. Then had 16 treatments of radiation as mop up. Recovered nicely from surgery/radiation - then oncologists determined I should take one of CDK 4/6 and continue to take Antrolosa. I elected to take Verenio since was a two year regime instead of three. I thought I was tough enough to handle but Versenio crushed me with headaches, fatigue, indigestion that included diarrhea and constipation, horrible lower stomach pains that moved from the front to the back - often could not stand straight, felt faint, unable to sleep due to the stomach pain - the mental fog was completely surprising and was delipating - have never been so depressed and unable to function. Even friends said I was an altered person they had a hard time recognizing. Two days ago stopped the Verenio - they are suggesting one week off then they will lower the MG - frankly after two days off the symptoms and fog clearing I am inclines to say NO to any CDK 4/5 drug. Even if this drug provides a better chance of stopping a reoccurrence, feel life is not worth living feeling even if symptoms reduced - simply no quality of life which was my primary reason from rejecting Chemo - this is chemo in pill form and very difficult to tolerate at my age. Would appreciate any information - so distressed thinking about going back on a lower dose of Verenio.

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I would recommend to go on low dosage and continue with Verzenio and see if you can tolerate that better. I am on Verzenio. I am also an otherwise very healthy 73. I had stage 3 ILC. Oncotype 30. Declined chemo. Had radiation. Was on Anastrozole. I was terrified of the side effects of Verzenio. However, because I have a high risk of recurrence, I agreed to try Verzenio at the lowest dosage (50mg twice daily). I had minimum side effects. Only 1 incident of diarrhea in the beginning. Now after 6 months, my oncologist suggested that I increase the dosage because the data for the study is from 150mg twice daily (3 times of what I was taking). I am now on 150mg per day (100mg in the morning and 50mg at night). I am on the second week and only 1 incident of diarrhea again. A little more fatigue, but otherwise ok. I believe that this medicine is effective and wanted to increase my chances of PFS. Everyone is different. I wish you good luck.

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Profile picture for aubreybill @aubreybill

You have described my symptoms - very similar. Little less than 4 weeks on Versenio 150MG twice a day. I am 73 very healthy woman with breast cancer reoccurrence after 30 years (previous mastectomy/tamoxifen) - found a lump under my arm which was the breast cancer returned in the lymph node stage 3, estrogen positive. Refused Chemo due to my age, started on Antrolosa in April 2024 to shrink the cancer, which it did with limited side affects. Had surgery and they removed 27 lymph nodes/11 were cancerous. Then had 16 treatments of radiation as mop up. Recovered nicely from surgery/radiation - then oncologists determined I should take one of CDK 4/6 and continue to take Antrolosa. I elected to take Verenio since was a two year regime instead of three. I thought I was tough enough to handle but Versenio crushed me with headaches, fatigue, indigestion that included diarrhea and constipation, horrible lower stomach pains that moved from the front to the back - often could not stand straight, felt faint, unable to sleep due to the stomach pain - the mental fog was completely surprising and was delipating - have never been so depressed and unable to function. Even friends said I was an altered person they had a hard time recognizing. Two days ago stopped the Verenio - they are suggesting one week off then they will lower the MG - frankly after two days off the symptoms and fog clearing I am inclines to say NO to any CDK 4/5 drug. Even if this drug provides a better chance of stopping a reoccurrence, feel life is not worth living feeling even if symptoms reduced - simply no quality of life which was my primary reason from rejecting Chemo - this is chemo in pill form and very difficult to tolerate at my age. Would appreciate any information - so distressed thinking about going back on a lower dose of Verenio.

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Adjuvant abemaciclib (Verzenio) is effective at a reduced dosage. See link:
https://pubmed.ncbi.nlm.nih.gov/38671001/

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