Abemaciclib Verzenio for Stage IV
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you are awesome! Thank you 😀
Julie
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I'm a bit confused now about where best to post....at this "Abemaciclib Verzenio Stage IV/Metastatic Beast Cancer ONLY" forum....or the new forum that was recently started "Abemaciclib Verzenio All Stages". I do know that when I first started visiting the Stage IV ONLY forum I very much appreciated the long post by zarovka (from January 1, 2018) with all the details on Verzenio written Constantine Kaniklidis that headed every page. The information by Constantine Kanklidis is invaluable and worth preserving.
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WenInWI - I responded to this in the 'open to all' thread, because I saw it there first. This thread is limited to Stage IV discussion. The other thread just provides a place for give and take with the lower stages that are now starting on Verzenio.
I agree, I don't want to see this thread disappear. Feel free to post to whichever audience you prefer.
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I appreciate seeing more discussion on this thread. I also moved from Ibrance to Verzenio becuse of low ANCs of every dose on Ibrance....but now have low ANCs on Verzenio too. Now my onc just wants me to stay on the highest dose and be careful. I'm torn, want to have the most effective treatment possible but also not be worrying about every pathogen that will inevitably cross my path. Ideas????
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I'd like to share what has finally worked the best for me dietarily with regard to controlling side effects from Verzenio. On the suggestion of another recent poster I have been following a low FODMAP diet. This has reduced my intermittent stomach pain to almost never/none and it has also reduced epsodies of loose stools (I still use imodium). I never had any problems with high FODMAP foods before starting Verzenio, but clearly do now. It's an easy diet to understand with lots of info available on line. When I want to know if a specific food is high or low FODMAP I just type in the food name + FODMAP and the answer comes up immediately. There is also an app that can be downloaded. Some of my favorite foods are now off limits (ex: apples) but there are many other tasty safe foods (ex: blueberries). The best bread product I've found is sourdough spelt flour bread made by Berlin Bakery. If not avialable locally, they will ship.
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prairiesea..... I've not had low neutrophils so far while on Verzenio, so not sure if following a low FODMAP diet would have a correcting effect. I do have low albumin and low protein and the low FODMAP diet has had NO correcting affect so far.
One idea I've read about for strenghening the innate immune system, which I beleive includes neutrophils, is to do Contrast Showers. There's info online and on YouTube re contrast showers. The basic protocol is: 4 minutes of hot (102F-110F), followed by 30 seconds (no longer than 1 minute) of cold (55F-70F), for a minimum of 3 cycles. I do the three cycle protocol about 3 times a week. I do just one cycle every day.
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Prariesea - I have been on Verzenio for almost 2 years at the 150 mg/BID dose. Initially I did have a low ANC. At one point it was so low that my onc at the time considered stopping it but the next month it was within tolerable levels. I have found after trending my levels that my ANC has steadily gotten better the longer I have been on the drug. I was also concerned about pathogens as I work in healthcare and this pandemic started shortly after I started Verzenio. I've done well just being smart about it without getting too paranoid. I wash my hands when I come home from the store, I carry hand sanitizer in the car, that sort of thing. I also intentionally choose dietary immune boosters like garlic, honey and citrus in my diet. I've heard intermittent testimonials about cold showers and cryotherapy techniques. I absolutely hate to be cold so I can't speak to the efficacy of that but what I've done seems to be working...knock on wood as we head into flu season ;-)
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My neutrophils are still low after almost 2 years on treatment and with my reduced dose of 100 mg in am and 50 mg in the evening. I am off for one week and will do a blood test again. Hoping it will be be high enough to stay on the Verzenio. I think with years of chemo treatment my blood cells are low and all these treatments only make it more precarious.
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Wouldn't you know it I had to go and say something about how great I had been doing and just this month had a drop in my ANC back to lower levels. Not so low that my MO would call and alter my dose but low enough to be watchful. This past week I have also started up with the GI upset again. Haven't had the spontaneous cramping and running to the bathroom in a while. That has been intermittent the last few years but for the last several months has been a consistent thing. I used to have no trouble unless I ate something super spicy or fatty now even a turkey sandwich will set me off. Not sure if these things are all Verzenio or just a cumulative effect of treatment overall. I only see my MO every four months so I am adding to my list of things to ask about.
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Hi, I am on verzenios for almost a year after one year of kisqali and small progression. It seems to work well for my disease, but with time my blood cells are getting lower, not only neutrofils but also erytrocytes. So also I think it is cummulative effect. Did you experienced the problem with anaemia as well
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emac - your GI upset sounds like my normal on Verzenio. I recall HopeandGratitude saying her diarrhea worsened after about 2 years on Verzenio. I don't know what dosage your on. For me, the D started to be unmanageable at about the 1 year mark, but a dose reduction to 100mg helped a lot.
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SeeQ - I guess it's just the gift that keeps on giving. I have to really watch my fluid intake also because I tend to have alternating constipation if I am sitting too much or not getting enough fluid and then everything will change course. I just am not sure what changed with my system but I see my MO in December so I will have to ask about a dose reduction.
Maaaki - I do think there is some cumulative effect. I had a drop in my neutrophils and my erythrocytes also. It seems to vary a little bit but this last round almost all of my blood counts were low.
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Maybe we were reckless in trying this, but it seemed to help. The Onc told us that once we went with a reduced dose, if it didn't work anymore, we were done with the drug. So, we wanted something we could do on our own, without telling the Onc. So, my wife takes 2 150's one day, and one 150 the next, resulting in a 25% dose reduction. She has seen no loss in effectiveness, and seen reduction in fatigue and increase red blood cell counts, but she is also taking 9mg enobosarm daily as well, so its hard to say which of the two made the improvements. Her side effects, like nauseau, are still there, but not as frequent.
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If you haven't already, do try Metamucil. I took 150mg of Verzenio, but had frequent diarrhea. Imodium helped but so did the Metamucil. My MO didn't want me on daily Imodium, and her nurse didn't think the Metamucil would provide consistent help because it's usually given for constipation. Anyway, I've found myself frequently constipated since switching to 100mg. The Metamucil has really helped. I hope it does for you too.
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Neutrophils still low but I guess my oncologist is going by the rules anything under 1.0 I take a pause and or reduce the dose, so I went from .78 to.9 after taking a pause for one week. This is on 100 mg in am and 50 mg in pm. I have been on Verzenio for 22 months. I started at the highest dose and have had several adjustments or lowering of doses. My pivot nurse says I can still reduce the dose further as long as the medication is effective. I will wait and see what happens next. I would like to stay on Verzenio. I am more constipated now that the dose is so low. So metamucil seems like a good solution for diarrhea or constipation!
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Husband: I’d started on high dose, later reduced, when that started to fail )according to tumor markers), I went back to max dose and milked a few more months out of Verzenio. Also, when THAT started to fail, I added Plaquenil (hydroxychloriquine), and that reversed the trend in tumor markers and would presumably have given me more time on Verzenio also, but I couln’t tolerate SE’s. Where do you buy enobosarm? Is it pure? Do they sell to US? Thanks
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We bought the ostarine / enobosarm from Science Bio. I felt they were to be trusted as they have all their batches 3rd party tested for strength and purity. They are located in the US. They are getting out of the Sarms business, so they only have to sell whatever they have left in stock. I have also heard that Chemyo is a good source and also tested for strength and purity.
What dose and regimen did you use for the hydroxychloroquine and what side effects did you suffer? I have a stash of it that I ordered from India before the pandemic.
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husband: thanks for that info!
I used 200mg twice a day. That was the effective-for-me dose. My SE'a were severe anorexia and insurmountable food aversions. Vegetables are my favorite foods and I hated them on hydroxychloriquine. It totally took my appetite away AND made me a super taster. Which isn't super at all. Also severe diarrhea, unspeakable STOMACH (not intestinal/diarrhea pain, but additional) pain. I lost 15% percent of my bodyweight and had severe sarcopenia. While many people tolerate hydroxychloriquine fine, I wouldn’t mess with generics. I’d get the authorized generic, which is brand-name Plaquenil marketed differently. I think SOME of the SE’s would’ve been less on that. Proceed with caution: due to its long half-life, it took three months for me to improve after I discontinued
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Thanks for all of this....I have had limited time to check in lately and hadn't noticed this thread had been so active. Thanks emac, maaki and all about the neutrophils, I'm sorry yours are also low, but relieved my MO is not alone in staying the course. I would second Star's suggestion of Meta Mucil. I tried it at the beginning but wasn't sure it was working as my bouts of diarrhea got more frequent. After a 3 day break from Verzenio to let my neutrophils come back up in late September I tried again to see if taking more would help. I'd only been taking 2 capsules 2 times a day. I found 4-5 capsules 2 times a day kept the diarrhea episodes to once a week, which is manageable. Am definitely feeling more fatigued too, though....I do think, even though I've only been on treatment (Ibrance first, now Verzenio) for 7 1/2 months, that it's cumulative. But recent scan shows partial response, and my back pain has improved considerably, so I'm fortified to keep going.....
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Here is an interesting summary of previous trial data on the use of high dose estrogen as a treatment for heavily pretreated patients. I thought this might be of interest, as so many of the women on here have been previously treated with AI's, and that apparently primes sensitivity to high dose estrogen treatment. As well, it has worked on women who are ER/PR negative.
The use of high-dose estrogens for the treatment of breast cancer (maturitas.org)
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Curious if anyone knows if vaccines would influence ANC? I've had 3rd COVID vaccine and flu shot . I have been off Verzenio for 18 days and they went a bit higher .9 last week and this week it is .7. Seems strange ANC are lower than previous week as Verzenio should be pretty well gone from my body by now.
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How much and how often / time of day do you take the Metamucil for helping with verzenio stomach problems?
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1-2x day
By the way, my nurse kept insisting it wouldn't work even when I told her it did help. Because it's meant to help with constipation, she wasn't willing to consider how it might help for diarrhea. Anyway, there's no harm in trying it out.
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Thanks, my wife is going to try it.
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Husband11- she may have to experiment with the dosage, more or less to find a comfortable balance. Gas X (simethicone) can help with potential bloating or cramping.
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Husband....I have had good results with Metamucil. I take the capsules--4-5 twice a day. However sometimes that tips me toward constipation, in which case i skip one of the doses for a day or two. I think she probably needs to find her own rhythm with it; it took me awhile. Hope it helps.
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Thanks again. She is trying it, one teaspoon of the powder in water, twice a day. Hopefully it calms her bowels. She is feeling less bloated today. It's puzzling the way it comes and goes. Makes you almost superstitious, in that you question everything you take in, wondering if that was the cause.
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Yes, and I'm not sure if it's about what we eat or about the build up of the medication.
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I really feel like I can eat most things, as long as I don't overdo it (e.g. bacon), and I don't do it every day (e.g. cruciferous vegetables or raw veggies/salads).
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As a retired pharmacist, I think that nurse who refused to believe in the dual value of psyllium is misinformed. Another option for handling either constipation or diarrhea is calcium polycarbophil=FiberCon tablets also sold in the laxative section!
I take 2 around lunchtime which separates them from my am and pm meds. Imodium (loperamide) worked too well, stopping things up and wearing off at a slow rate, very uncomfortable. In addition, dietary measures can help such as eating popcorn.
Now on this CDK 4/6 inhibitor for over 3 years, it has been successful in preventing progression. I started it 12 months after FDA approval. We were able to do some travel initially however COVID has caused us to stay home…
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