Abemaciclib Verzenio for Stage IV
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Hello shanagirl,
my mother has been on verzenio- faslodex combo for 1,5 year. During this time she has felt intense fatigue and at some point in the summer she had terrible itching, so the doctor diminished her dosage on 100mg twice the day. Studies show that this dosage has similar effects to 150mg. Maybe you can discuss this with your doctor. I hope I helped you.
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Shanagirl- you might consider a dose reduction to 100mg. I did this and it helped with the gastro issues (did not completely resolve, but it's manageable) and had the bonus of extra energy. Dose reductions on Verzenio are pretty common.
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@shanagirl - I did a dose reduction from 150mg to 100mg after 1 year. It helped greatly with the fatigue issues. @ailurophile - you mentioned that you have been on Verzenio since 2019. Am wondering if your Creatinine and eGFR have remained within standard/normal range throughout the entire time.
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Shana, I started to progress on bone scans ( CT was OK) and Guardant found a new PI3KCA mutation plus high tumor mutational burden, which is an indicator that CDK4,6i aren't working well anymore. I added a daytime Celecoxib (200mg) to hit the PI3KCA mutation and dropped the daytime dose of Verzenio, keeping the nighttime dose (100mg) (MO wanted that), and now TMs dropped & scans stable. SEs are not gone, but much better, I couldn't handle the 200mg.
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@shanagirl thats all I’m on now. It’s been over 2 months and everyone comments how well I look and I feel so much better. I have young kids at school and I can now do things with them again so it’s worth it for me.
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@shanagirl My MO is reducing my dose to 50 mg twice a day because my ANC has been below 1 for a long time and dropped to 0.77. Everyone is different, and they try to adjust things. Counts tanked on every dose of Ibrance so switched to Verzenio. I've been on the 100 mg twice daily for I think 2 years. I had some progression this summer so switched letrozole to Faslodex. I'm exhausted most of the time and hope the lower dose helps and still hammers the cancer. Maybe you would have less side effects on a lower dose.
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shanagirl,
I was on Verzenio 27 months and decreasing the dose to 100mg twice daily did the most to reduce the diarrhea for me. At that dose I was able to get along with one Imodium about every other day. Plus I also followed the often repeated advise on this thread to drink plenty of water, and use a probiotic. I found probiotics in pill form useless. What worked best for me, and was affordable, was unsweetened kefir 1/4-1/3 cup with each meal. I also added fiber to add bulk to the stool. I used Konsyl Daily Psyllium Fiber because it doesn't have any sugar.
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I’ve been off Verzenio for 3 weeks. On Prednisone for the lung inflammation. Boy I’ve felt good! Don’t know what’s next for me but I’m trying to enjoy it!
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I'm at a crossroads - I posted a couple of weeks ago that I had progression on Verzenio (taking it 11 months now) after a 5+ year run on Ibrance. Oncologist wants me in a clinical trial (LOXO or Scorpion?) or on Piqray. My Guardant blood work shows no PI3K mutation, though apparently it was there six years ago. My concern is, if it isn't there (though onc. says she thinks it is, just not showing up - is that even a thing?), none of these drugs will work anyway. So I don't want to do any of them. Looking into the trials, I would have to give up my winter in Florida - not gonna happen. Piqray has too many side effects, and I'd need lots of blood work, so would need an oncologist in Florida as well. Not interested in that at all.
Also - I've been on Letrozole since the beginning. When I switched from Ibrance to Verzenio, she kept me on the Letrozole. What if it's the Letrozole that isn't working? *sigh*
My questions - what else is out there? Anyone here in the Verzenio group who's stopped taking it and moved on to something else? Or has anyone's doctors told them what comes next, if they have progression in the future? If not CDK 4/6, then what?
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@ciaci - I recently attended a presentation from Dana Farber. According to them, there are a number of options.
Have you gotten a second opinion?
Where in Florida do you stay during the winter? There are cancer centers on both coasts as well as in Central Florida. Feel free to DM me.
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ciaci,
I was on Verzenio and Letrozole 27 months (no progression) but switched to Ibrance & Letrozole due to accumulating side effects and had progression w/i 3 months. Stayed on Ibrance & Letrozole for 8 months until the liver lesion was big enough to biopsy. Have the ESR1 mutation, but no Pik3 mutation. Do you have the ESR1 mutation?
Switched to Afinitor and Fulvestrant for 3 months - had progression. Switched to Xeloda (oral chemo). Was stable at 6 months, had progression by 9 months. I learned to handle the Hand/Foot syndrome side effect.
Switched to Elacestrant, new oral estrogen degrader, that targets the ESR1muation. An easy drug to take in terms of s/e but at 3 months I now have progression. I've been told my next switch will probably be to Enhertu as I'm Her2 low 1+. Probably means no going to Arizona for me, as it's an infusion.
Please keep us informed on what you decide. The best to you.
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Hi everyone,
I was reading the comments about coughing and pain when breathing deep. I have been having a problem since the end of July with a lump sensation in my throat and pain at the base of my throat when I breathe deep. My radiation therapy ended in mid June. I have been to two ents and a gastroenterologist. The gastroenterologist put me on omeprazole 40 mg for three months, no improvement. Nasal spray no improvement. I am scheduled for an endoscopy/colonoscopy next week. Also in the morning when I try to breathe deep it really hurts in my throat and upper chest and it makes me cough. Once I’ve been up for a bit it’s better but the base of my throat still hurts when I breathe deeply. I had the radiation oncologist order a chest X-ray and as far as he was concerned there were no effects from the radiation although the report stated that there were some “irregular, short, plaque-like densities” that “are nonspecific and may be fibrotic in nature”. My oncologist, however, is concerned about that and has ordered a CT scan. I know something is obviously very wrong but I haven’t been able to get any answers yet and my anxiety levels are through the roof. Have any of you had any of these symptoms? Thank you.
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Subject: Verzenio -side effects "pneumonitis"
Dear everyone,
I am new here, and I am reaching out to seek your valuable insights regarding some side effects that my mother has encountered while using Verzenio (Abemaciclib). I am writing on behalf of my 65-year-old mother, who holds a special place in my heart and is the person I care about the most. She was diagnosed with metastatic breast cancer, specifically ER-positive breast cancer, two years ago. Since then, we have been on a journey visiting doctors, hospitals, specialists, and oncologists, all in the pursuit of ensuring she receives the most effective treatment.
I want to express my gratitude for your understanding if my message lacks some medical terminology. I hope you can empathize with the concerns and questions I wish to share. I am keen to know if anyone here has encountered rare side effects of Verzenio (Abemaciclib), such as pneumonitis. If you have, did you receive additional treatment to manage pneumonitis and continue with Verzenio, or could you kindly share your experiences in dealing with this particular side effect while undergoing Verzenio treatment? Additionally, I would like to inquire whether there might be alternative treatments to Verzenio (Abemaciclib) that have proven effective without causing such challenging side effects.
Allow me to share my mother's story:
She was initially diagnosed with recurrent metastatic breast cancer, ER-positive breast cancer, in 2022. In 2014, she had her first encounter with breast cancer, at stage 3, which led to chemotherapy and a lumpectomy, followed by post-surgery radiotherapy. Afterward, she was prescribed Tamoxifen, which she did not tolerate well, and subsequently transitioned to Letrozole, a medication she continues to take to this day. In 2022, she received the disheartening diagnosis of metastatic breast cancer, affecting her bones, lymph nodes, and leading to the development of nodules in her lungs. Radiation therapy was administered to reduce the lung nodules, and this treatment proved to be successful. Given the hormone-positive nature of her breast cancer, she received hormone therapy, complemented by a CK4/6 inhibitor and bisphosphonate treatment.
In 2023, she embarked on a journey with Verzenio, at a dosage of 200mg twice daily, and continued this treatment for nearly a year. During the course of this treatment, her tumor markers exhibited positive progress. However, a few months ago, she began to experience chest pain and respiratory issues. She was compelled to pause her Verzenio treatment for a duration of four weeks to allow her lungs to recover. A thorough lung scan was performed to assess her condition, and some improvement was observed. Regrettably, her tumor markers showed an increase during this interval, prompting a reduction in her Verzenio dosage to 150mg twice daily. Despite this adjustment, she faced another episode of pneumonitis, necessitating a further pause in her Verzenio treatment and another lung scan. As a result, she was prescribed a lower dosage of 100mg twice daily. The impact of pneumonitis has been nothing short of a nightmare for her, as it severely limits her ability to move around the house. She experiences constant fatigue and struggles even with simple tasks like climbing the stairs or walking within the house.
Your collective insights, shared experiences, and any guidance you can provide would be immensely appreciated.
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Hello marta65,
my mother is also 66 years old with recurrence in nodes, bones and lung. Unfortunately the fatigue is quite common but it has improved since she diminished the dose in 100mg twice daily. She has been stage 4 since July 2022 and is on verzenio and faslodex since then.
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So, had another conversation with oncologist. She thinks I should switch to Tamoxifen for three months, then do PET and CT scans to see if it's doing anything. Discontinuing both Verzenio and Letrozole…
I don't have the ESR1 mutation…
Thanks for the responses, this is so confusing…
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I’ve developed pneumonitis from the Verzenio. I had trouble taking deep breaths and trouble taking walks. I’m currently on a break from Verzenio and on a course of steroids. Feel normal now. I don’t know if I’ll be going back on it or not. Have an oncologist appointment next week. I hope you can get it figured out!
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Ciaci, What mutations did the test pick up?
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Wow everyone, thank you for all the info and your experiences with Verzenio. I’m thinking I will talk to my Oncologist on Nov 15 at my next appointment. I want to as him about reducing my dosage to 100 mg. I also was wondering if anyone knows about PI3KCA? I noticed it was on a report in MyChart. Is P13KCA poor prognosis?
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Shanagirl- the PI3KCA mutation adds Piqray (apelisib?) to your arsenal. There's
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@Marta, I have had a few bouts of pneumonitis myself. First with ibrance. I was having progression around the same time, so I stopped it. Worse case of pneumonitis with the next med Affinitor, which had me on oxygen for several months, but fortunately i recovered. Next few drugs didn't have this side effect, but now I have circled back to the CDK 4/6 with Verzenio and my doctor has started me at 50mg and going up by 50mg every 3 weeks to give my lungs gradual exposure. Additionally, I follow with a pulmonogist who suggested if necessary we can do low dose steroids to prevent or manage mild lung issues. My oncologist is hesitant to ever put me on enhertu because of know lung issues. I feel like my choice from here on out are limited so I hope this works!
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cureious, literally the only mutation that showed up is IDH1. There are two drugs that apparently inhibit IDH1, but they are for a specific kind of leukemia?!?! I am going in for blood work next week so Sloan Kettering can re-run the Molecular Pathology to see if their results are any different from Guardant's.
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Ciaci, Just one mutation, following progression on Verzenio-Femara? Perhaps the tumor burden is very low and they just didn't get much. The first genomic test I had came up with a few mutations, none of which was typical for MBC and none of which remained in the Guardant test I took three years later, after progression on Verzenio-Faslodex, and at that point the test came up with only two mutations, PI3KCA and ESR1, which obviously made a lot more sense. An IDH1 gene mutation would be quite unusual for MBC, and I'd bet its nothing. I think the Guardant test can be done every 3 months, so perhaps a repeat would pull out something more useful.
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My Verzenio dose has been reduced to 50 twice daily but I had just been sent the refill for 100s. I have five unopened boxes. You can't return them even if they are unopened and I don't see where you can donate them anywhere. This medicine is worth thousands of dollars and could help someone else but I'm just supposed to throw them away. This bothers me. It isn't right. Medicine shouldn't cost so much to begin with and then all the headaches getting it through insurance...
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@mkestrel , There are two organizations that I know of that accept unopened meds with at least 6 months remaining before expiration.
safenetrx.org (I have donated here as an individual) and sirum.org
They provide meds to those waiting for insurance approval, in the medicare donut hole, whose formularies don't cover the prescribed drug and others who are income eligible. They don't take controlled drugs and other meds have to be in unopened boxes or blister packs (even partially used.) I'm happy that someone can benefit from what I can no longer use.
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@Maggie15 thank you. I will look into this.
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mkestrel, there is a pharmacist that works out of my oncology office that does consultation on the different meds. I see him when I change meds. He takes my unopened verzenio packs and knows of organizations that take them to distribute to those who need them. You might ask your oncology office it they have anyone on staff who does this.
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My lungs are healed now and I’m going off the prednisone and back on Verzenio at a lower dose (100 2x day). I’ve enjoyed feeling normal and more energetic but that’ll be over soon. Fingers crossed for my poor lungs.
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I have been on Verzenio and Letrozole since my Stage 4 diagnosis 14 months ago. My Mets are in my left lung pleural lining and a node in my right axillary. I found out this week that my most recent PET/CT scan showed mild progression to the plura and mediastinal nodes so my oncologist wants to keep me on the Verzenio but change me from Letrozole to Faslodex. I started my first loading dose yesterday and ouch my butt is sore.
I am VERY disappointed I only got a little over a year from the Letrozole so I wanted to know of anyone not having success with Letrozole but did have more extended success with Faslodex. My fear is since the Letrozole didn’t work long that I’m gonna run out of treatments quick. I also asked my oncologist for the Foundation One test and he said it best to wait on that until we come to a point where we are searching for a non estrogen approach. I’m praying I get many years out of this new combo of Verzenio and Faslodex but would love to hear from others.
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Kasey… Hopefully you will get genetic testing like Guardant- one reason for progression on an AI is if you develop an ESR1 mutation. some of these can be inhibited/degraded by Faslodex, but a couple of them, including the strongest ESR1 Y537S mutation, are also resistant to Faslodex, and you would want to move instead to an oral SERD in that case. When progression happens, especially early, its important to try to identify why.
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