Abemaciclib Verzenio for Stage IV
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GoingtoBeatThis - Best of luck with that fulvestrant! I was actually taking Letrozole when I became metastatic, so dropped that and switched to fulvestrant when I started the Verzenio. You did real well with it all though - 4 years! That's wonderful.
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Just started Faslodex/Verzenio in January. My CA 27.29 has jumped up 8 points to 38.7 (flagged "high") in a single month (usually in high 20s to low 30s). I was on letrozole/IBrance for 8 years, no "highs" then. Onc wouldn't schedule a PET scan until May (7 months from my last scan) because she says we need a while to check if the new medications are working. Recommendations are 4-6 months apart. Should I be concerned?
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Hi @polemonium I certainly cannot give advice but I get my scans approximately 3 months apart regardless of if my meds have changed or not, just to keep an eye on everything. I don't get PET scans though so maybe the is the reason?
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Hi ladies, quick question regarding side effects from Verzenio. I have been on 100mg since October. Have had the big D pretty regularly and controlling pretty well since November. I missed 4 days of Verzenio about 2-3 weeks ago because of delivery issues. Now I've been back on for 2 weeks and I've gone from the big D to the big C. Should I just ignore and wait it out knowing the big D will be back before I know it? Thanks!
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@marcials1 I found when I missed more than one dose the Big C starts. So if I know I am going to miss more than one, I take Colace that night. It is gentle and keeps me going until I get regular again. Others may have other ideas, but I avoid those stomach cramps as much as possible. You can do that now and it may still help…it did me.
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I was dx'd de novo with liver mets in June 2020. IDC, ER/PR+, HER2-. Verzenio/Anastrozole is my first line treatment since July 2020. My tumor markers quadrupled the first month (CA 15-3 went from 216 to 879) and took a few months to drop significantly. I think maybe the tumor die-off can affect the TMs. My largest liver tumor (12.8 cm) had shrunk by half at 4 months. My scans were clear at 7 1/2 months, and remain so. I had started at 150mg and reduced to 100mg at that time. It helped with the D, some of the fatigue, and I got some of my thinned out hair back.
I was originally scanned about evry 4 months, then moved to 6 months. About a year ago, I started scanning every 3 months to watch something that eventually went away, and we're going back to the 6 month schedule.
This is a great resource for support, both on the boards and in the zoom calls. Also, there is a Zoom call specifically for lobular...I think once a month.
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Good Morning @aisha11, welcome and sorry you had to find us after being NED for 11 years. I can relate to that and the shock of being suddenly diagnosed with stage IV bone mets after 13 years of believing I was also cancer free after surgery & treatment in 2009. It’s such a shock, after thinking you beat breast cancer for years. I now believe breast cancer is so insidious and the cells hide out somewhere for years only to appear again as traveling. Tumor cells on a blood test and settled somewhere else, in my case, my bones. My Onc put me on Verzenio and Fasoldex & Exgeva monthly injections, and so far I’ve been stable, NED. But I no longer take that for granted. I am always on pins and needles before my scans every few months wondering if something else will show up. Verzenio can be tough to deal with in the beginning with the SEs. Diarrhea is a common side SE, along with the fatigue and nausea, but Imodium and zofran takes care of that. You are in my prayers for a peaceful mind as you are forced to accept this new Breast Cancer development. Take good care.🌷🩵
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@intolight Thanks for the Colace info.
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Thank you All for your answers, I really appreciate it. Because I am from Germany and I could not find such a experience forum for verzenio in German
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Well it happened today. My lovely daughter and I went out to breakfast then were planning to run a few errands I’ve been putting off. We were at stop #1 when my stomach started “acting funny.” We quickly got back in the car and tried to make it home. I’m sure y’all can see where this is headed. Yep, a quick dash into the library a block later but was a little late. So home to shower, pop clothes into the wash, get redressed & we were off again to successfully get everything done. I’ve had D off & on but not for a few days so I thought I was safe. I also ended up in the ER Friday evening with an asthma attack! That hasn’t happened in more than 20 years. I have Savi scout placement then lymph node surgery and lumpectomy in April so I wonder how much is stress related.
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@orknitter So sorry this happened to you. Been there done that more than once! Glad you were able continue on afterwards. I usually end up cacooned in my recliner too exhausted to do any more.
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Sorry @orknitter ! I have had an "almost". Every time I think I have the timing worked out it changes on me. Also, I hope your asthma is under control.
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@orknitter - sorry that happened to you. I have had "almosts". Once, that was unexpected and would have been very...public. I frequently take Imodium as a preventive if I'm going to be out for the day. Are you on the full dosage (150mg)? If so, you might consider a dose reduction. I was too afraid to do it before I reached NED, but it helped me. The efficacy at 100mg is supposed to be the same.
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@seeq Sorry if I missed this but how long has it been since you dropped down to 100 on verzenio? How many scans have you had that are still NED since dropping down? I am debating talking to my onc about a dose reduction. I am not sure she will be keen on it, she's pretty by the book, but in the last 3 weeks my big D got really bad and then I developed a terrible sore throat. Turns out it is something called Laryngopharyngeal Reflux. The D is better now but I can barely function with this acid related stomach issue even while on medication for it. I had reflux issues in the fall and onc did prescribe famotidine but I stopped taking it when symptoms seemed to subside. Anyway just a little nervous to drop the dose. Thanks in advance.
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@iacmelis11 - I dropped to 100mg four years ago. A year and a half ago, there were some subtle findings on PET-CT and MRI, but I had negative results from a biopsy. All subsequent scans were clear and I'm just now back on a 6 mos scan schedule. I'm still at 100mg with 1 mg anastrozole.
Read back through this thread a little bit; there are fairly recent posts with links to studies about the efficacy of the lower doses.
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@seeq thank you for sharing your experiences with going to a lower dose. Like @iacmelis11 i have also been debating asking my onc to drop down. I’m only a few months into taking the Verzenio and when I started it the SEs seemed manageable but it has become more difficult. Sometimes to the point where I don’t want to eat because I don’t want to face the consequences.
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@seeq and @cskinner Funny you posted. I am sitting in the office of an oncologist I am seeking a 3rd opinion with. After I posted on May 4th - I had an appointment with a second opinion, who, without any prompting, mentioned I should try a dose reduction. He thinks my throat, sinus etc issues are a result of this highest dose of Verzenio - not just as a result of the known heartburn side effect, but general wear down of my body and immune responses. It turns out I actually have a bacterial infection in my throat as well as candidia. He absolutely thought a dose reduction would be fine for me and that I would feel amazing. I am curious what this Dr will say today. My current onc hasn't suggested it. She just told me to stay off Verzenio until I am done with anti-biotics. It's all so interesting to me how different doctors say different things and some really don't say much!
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@iacmelis11 - it's interesting that your MO told you to stop Verzenio while on antibiotics. I have heard others say the same thing. I was on antibiotics 3 times last year for UTIs. I looked up drug interactions, and there were none - I didn't even consider calling my MO. 😯
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I was just on antibiotics and checked for interactions with Verzenio and also asked my pharmacist to look into for me. I saw no issues but decided to check with my MO. She said to go off of Verzenio while on the antibiotics. I just had my blood work follow up appointment with her and the reason for her taking me off of Verzenio was liver function. Just as a precaution.
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Am officially off of Verzenio after a little more than 4 years. Moving on to Enhertu after a very brief time on Faslodex. If you want to ask me anything about my experience/hints with Verzenio, feel free to send me a message.
Hope we are all "Going2BeatThis" and find a treatment that controls our disease. Best of luck to everyone on this thread.
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Going2BeatThis - Wishing you all the luck in the world as you move on with Enhurtu. You are an inspiration with having had a good 4 years with Verzenio. I've had 2 and can only hope to get at least 4 like you! I will continue to watch for your posts.
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@going2beatthis Wishing you a good long time on Enhurtu. I have been off Verzenio for five months after a two-year run. I am currently on Orserdu although I obviously check on this thread occasionally.
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Hi all, I am wondering if anyone has tried just one 100mg Verzenio at nighttime? Wondering if it would boost response to Elascestrant or other endocrine therapies, and if it was sufficient to not have diarrhea and fatigue? The lowest dose of Verzenio is 2x50mg, so one 100 tab would be more or less equivalent to the lowest dose (given it has an 18hr halflife), and if taken at night when the risk of metastasis is highest it could be even more effective.
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@cure-ious I have never heard of this but would be interested in hearing what you find out since I am on elascestrant and that probably is my last oral.
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IntoLight, Well we know that adding Verzenio to Elascestrant gives better results (trial results link below), so it'd be reasonable to try adding Verzenio when TMs go up and it might be fading, I'm just wondering if even a minimal dose of Verzenio could help…
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@cure-ious That is an interesting study. I still have several months of Verzenio that I have not turned in (long story.) Right now I am focusing on QOL and am not sure whether I want to go back to additional side effects, but I might ask my MO next time I see her and have progression. Right now I am happy with Elascestrant and feel like I have at least part of my life back, but I am tired of the restraints of this disease and fighting so long. I shall see with the results of my next scan, which hasn't even been scheduled yet.
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Right, that's why I was wondering if a minimal dose of V might also boost Elascestrant activity, with fewer side effects…
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I have been on Verzinio for two years. I have low white, red blood cells. Low hemoglobin and platelets. As well as the mild side effects. I get IV hydration weekly and just had a blood transfusion. Could the Verzinio cause the abnormal and shredded red blood cells? Can it cause aplastic anemia? Has anyone dealt with this?
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Bumping for @linda3517! Just bringing your post back up in case it got missed. Hoping some of our community members with experience on Verzenio can chime in. In the meantime, here is a full article on Verzenio (Abemaciclib): What to Expect, Side Effects, and More. It might be helpful as you navigate this.
Hope it helps, and we look forward to hearing more from you soon!
The Mods
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@linda3517 I am no longer on Verzenio but it only mildly affected my blood. This sounds like a heave side effect to me, but everyone is different. It did work for me for two years.
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