Stage III and Verzenio
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Hi seeq,
Thank you for sharing your experience. A question I am nearing the end of my two year course on Verzenio and I expect my MO to recommend that I stay on it indefinitely because I have a high risk of recurrence. My biggest concern is worsening of side effects. I’ve developed runny eyes that affect my sight for a few hours each day and I’m having more trouble with mood lately. Have you experienced or heard of others who experience changing or increased SE the longer they take Verzenio?
Thanks again for coming to this forum to share your experience!0 -
I recall one person who had increasing trouble with severe diarrhea, but I'm sure that was before the 2 year mark. You can always consider a dose reduction if your SEs get worse - or if they just start to wear on you. I think it was one of the later Monarch studies that showed a lower dose was equally effective in Stage IV, so maybe something for you to talk to your MO about?
There are getting to be more people on Verzenio over two years, because there are just more people on it, and more people using it as the first-line treatment. Stage IV stays with a treatment until it stops working or the SEs are intolerable. When I started, I was told 24 mos is average PFS, but that was almost 4 years ago and it's still working for me, so I'm pushing the curve out. 😀
There's at least one other person here who's still on it after about 3 years. Probably more, but one I can think of.
There have been a few people with watery eyes. Someone mentioned using Systane drops, but I'd check with your MO first. The only mood issue I experienced was caused by changing from HRT to estrogen blockers 😯, the shock of the dx, and the extreme fatigue in the beginning. It all smoothed out after awhile.
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A month into Verzenio. Started out fine but now I am into the vicious cycle of the big D and constipation, stomach cramps and bloating if I do take Imodium. Trying to see if I can get off this cycle by eating/drinking better. I am on 150 2 times per day.. Any tips appreciated. I am on Verzenio and Exemestane with hopes that the combo shrinks a chest wall tumor so surgery and radiation can be an option for me down the road.
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@lenn13ka - if you're not already taking multi symptom Immodium, that might help. I've added simethicone (e,g. Gas-X, Phazyme) to help with the cramping. Also half or quarter doses of Immodium may reduce the constipation and cramping. I've used the liquid Immodium to make it easier to get smaller doses.
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Hi @lenn13ka,
@Seeq is right on the money with her recommendation for the multi-symptom Imodium. I finished two years of V in February and the multi-symptom Imodium was what enabled me to stay on the 150 X 2 dosage. I also had a prescription for Lomotil from my doctor and used that as well. It helped to slow things down through my intestines, which made a big difference. The two together were a game changer for me. I also used the Gas-X to help with the stomach cramps. Those did calm down for me the longer I took it.
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I am not stage IV nor stage III, but I can report on worsening fatigue especially during my second year with Verzenios, and I think I have read of another person who suffered a sudden increase in fatigue after 9 months or so. In my case, the fatigue increased slowly / in steps, and exercising as frequently recommended for cancer related fatigue had no positive effect on it. I never tried a dose reduction though, as the 2-year mark was getting closer each time I noticed the fatigue has gotten worse. I sticked with 150mg twice a day, and just finished the two years of adjuvant therapy, now waiting for my body to recover.
I also believe that the constant battle in my bowel over time has taken its toll, even though the diarrhea remained manageable with increasing amounts of loperamide. After 1.5 years I had developed a VIT B12 deficiency, which seems to be common or at least a possible side effect of Verzenios.
On teary eyes I can only report that I know this side effect, too, but didn't find a remedy.
Despite all the nasty and/or annoying side effects, I agree with seeq that there is always the option to ask for a dose reduction when necessary. I probably should have done this with my worsening fatigue, and certainly would if I had been asked to take these pills for more then 2 years.
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I was also struck hard by the diarrhea at the beginning, but learned to control it with preemtive loperamide and psyllium husk (e.g. brand name Metamucil, but there's other options, too). I started with a tea spoon of Metamucil once a day, but quickly increased to twice a day. The magic of psyllium husk is that it works both against diarrhea AND constipation, making the sharp ridge between the two wider and more comfortable to navigate. It works by soaking up liquid and producing bulk in the bowel. Make sure to keep a distance of at least two hours before and after any important medication.
For me, psyllium husk alone was not sufficient to control the diarrhea (apparently for some folks it is), but it became at least manageable with regular loperamide - I started with 1 loperamide each day and adjusted whenever the equilibrium did not work anymore.
I plan to post a complete summary of my experience with Verzenios on the "Abemaciclib Verzenios for All Stages" board in the near future, but not today.
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@kafich we really appreciate you sharing your experience, and we welcome you warmly to our BCO community. 😍
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Thanks mods, I myself profited a lot from reading other people's experiences with these drugs.
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I started Verzenio 02/08/2023 . 150 mg 2 times a day. My side effects briefly
Diarrhea - manageable, have episodes but not very often, maybe because before diagnosis I was always constipated. The first 7-8 months was totally fine then started having D . I don’t take medicine for that
Fatigue is also manageableBlood test was done every 2 weeks at first and now every mouth. The results are close to normal ,so my doctor keeps me on the same dosage.
My biggest SE is hair lost. After chemotherapy my hair started to grow but when I started V it started to fall out. I have only 50% of my hair . My nails are very brittle . I am using some remedies, but no effect.
Teary eyes is another huge issue. Nothing helps….Sometimes I have runny nose with this. Very annoying…
Diagnosed 05/2022 Stage 3A grade 2 right side ER+PR+HER2-
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Thanks for all the Verzenio tips everyone. I will try those and have also switched up the timing of my exemestane to evening so now not taking the same time as Verzenio in the morning . Seeing if that helps at all.
I took Palbociclib for almost two years in a clinical trial back in 2015. I don’t remember these kind of side effects..
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A huge “thank you” to everyone sharing their experience with Verzenio. This has been very helpful to me. I’m learning new techniques from y’all that I haven’t heard anywhere else.
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hi y’all,
My MO’s PA suggested that I take my Verzenio exactly 12 hours apart rather than at 8am and 10pm. I was skeptical that it would make any difference but I’ve been pleasantly surprised. I’ve had enough success with it that I’m going to try dropping my evening dose of Imodium.
anyone else had similar experience?0 -
I took my V dosages at 6 am and 6 pm. I didn't need a nighttime dose of Imodium when I stuck to that schedule. If I was late with that evening dose….you can guess how that turned out and it wasn't good.
I set an alarm on my cell phone to remind me of the time so I wouldn't forget it.
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kotchaj,
You are so right! If I deviate from the 12 hour routine and take 2 dose too close together, even if it’s just one hour off, I struggle. Thank goodness for cell phone alarms!
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I am about to finish Verzenio and read that if CTDNAs are detected via Signatera after Verzenio, the chances of a recurrence increase significantly. Anyone get Signatera done?
I'm really hesitant and worried about getting the test but was wondering whether I should. Plus if there are Ctdnas, what can be done about it? More treatment?
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Hi @luck2468,
I finished in February of this year with 2 years of V. I have been getting the Signatera testing every quarter. Mine have all come back with no CTDNA. I'm due for another one soon. My appointment is in October, they had to move it further out due to some scheduling issues.
Should you get one? I'd say that is completely up to you. There is a significant wait time to get the first results as they have to get part of your original tumor and then build whatever they need from it to test. It took three weeks of waiting to get my results. I was a hot mess, not gonna lie, waiting that long for test results was very hard. Thank goodness for Xanax. Everyone is different and each time so far I've been nervous to get the results. It is completely up to you, on whether or not you decide to test.
I honestly am not sure what would occur if there was any CTDNA in my blood, what the next steps would be. It's such an early detection.
Amanda
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luck and Kotchaj,
I hope you don’t mind me posting here. I am interested in the discussion about the ctDNA test. My 5 years of AI’s ended in March after the BCI test said no benefit to continue. However, my risk of recurrence is high. My onc said she would do ctDNA test if I wanted it but she doesn’t really like to do it. Her reasoning was that she can’t do anything about the results if they are high. So, I declined. It would be too much for me mentally.
There is a trial that I read about here on BCO that treats circulating tumor cells if they find them after doing bone marrow biopsy. I can’t remember the name but the mods might be able to find it.
I did reach out to the onc who did the podcast and she responded to me immediately and answered my questions.
However, I am not in that trial at the moment.Also, I was never on Verzenio. My cancer diagnosis was in 2018. That wasn’t offered to me back then. Please share if you hear anything from your onc about treatment related to ctc’s.
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