Abemaciclib Verzenio for Stage IV
Comments
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lulubee: could it be that you perceive nausea as anxiety? I definitely get slight (used to be considerable) nausea 15-60 minutes after taking Verzenio. And when I'm nauseous, I tend to get anxious.
Take it with food if you aren’t already
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No nausea whatsoever.
Just that revving-motor-inside, shaky/nervous feeling like you're about to snap at the slightest thing. Like really bad PMS used to feel. It lasts 1-2 hours and is derailing my entire morning of work. By the time the anxiety wave wears off and I start to regain a little momentum, the afternoon fatigue wind-down starts heading my way.
I am a writer and a mentor, and this is severely hindering my ability to be effective at either. I'll have to experiment my way toward discovering a workaround or a remedy unless someone here has some experience with this.
I take the morning dose with breakfast; the evening dose falls well after dinner, though. I do have to take 1 Imodium as soon as I wake up-- but that's only a half-dose so I wouldn't think that would cause anxiety.
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the beta-blocker propranolol has both anti-aniety and anticancer properties.
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lulubee...what you're describing are the symptoms of adrenals exhaustion....look up Ashwagandha, it's an effective herb listed also on the MSK website for its anti cancer properties. It basically relaxes you and gives you a sense of well being, reduces the sense of anxiety that stress creates
Reduction or eliminating all sources ofcaffeine, ingesting vitamin C in addition to sea salt added to a good source of proteins and fats, supports the adrenals. Of course, reduce all sources of persistent stress...a lot easier said than done.
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Thank you for the reminder about adrenal exhaustion. For years, I took Adrenal Health by Gaia (which contains ashwagandha, holy basil and rhodiola) and it was like my magical zen crack cocktail. I stopped taking it a few drugs back, can't recall now which of the treatments back up the line had a conflict with something in the formula. The details get fuzzy by the time you get to treatment line #7.
I have been under too much stress this past month. I definitely believe these anxiety spells are connected to verzenio because of the timing of onset, and because it started when I switched to verzenio... but I do also get it that sometimes you can eat the corn if you don't sleep with the cats. So to speak. In other words, I'm on overload right now and the verzenio might not have this effect on me if other things weren't draining my adrenals so much.
Time to tell a few people/things to get offa my cloud, I guess. LOL
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lulubee: wow, you also have some weird mets (my weirdest is the omentum), and your original tumors were also multifocal and lobular and ductal. since your recurrence appears to be lobular (or both) judging by the sites, i am glad to know you responded to xeloda for years: i have read that lobular doesn't respond to chemo as well as ductal does.
you are lucky aswaghanda and all those adaptogens work for you; i took them for years with zero success. i had chronic fatigue syndrome decades before i found my cancer, and even my oncologist thinks the two are connected in my case.
i stopped most supplements when i went on verzenio (i was taking up to 40 a day), since nothing had apparently helped (i recurred fast) and i did not want to interfere with verzenio. i started reintroducing some over the last few months. it's tricky, with all the possible interactions and how pretty much everything can backfire or go either way with any individual cancer. so complex.
let us know if going back on adaptogens takes care of your anxiety attacks! (my anxiety is clearly tied to hot flashes: every hot flash--and i have about 24 major ones in 24 hours--announces itself with a mini panic attack. utterly miserable.)
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luce, Yes, I have weird mets. They're all lobular. The ductal never recurred.
I had wretched anxiety attacks for a whole year from the amplified hot flashes that hit after oophorectomy + AI came on the scene in 2010. Big mood swings, despair, depression, and just physical misery round-the-clock. All totally out-of-character for me. It all stopped with a small dose of Lexapro. The sun came out again and I got my life back within the first week. I took it for two years, and when I titrated off of it (with no problems) the hot flashes never returned. You might try it.
If I could find a drug to make that much difference now in the way I feel, I would take it in a heartbeat.
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Lulubee, please double check with your oncologist before taking any supplements. Mine asked me to stop it all but my Mets are in my liver so it might be the reason that my onco doesn't want me to take any herbal supplements. Good luck with Verzenio. I had a nasty first month but I started to feel better recently. You will get used to it and you will have better days and only some not so good days
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Ailurophile, I agree, this is always a concern of mine. I like my supplements, always have, but there have been times on all these different meds when I've stopped all supplements out of fear of the unknown.
This was one point on which I felt much surer of things while taking an old, heavily researched med like Taxol over a new drug like Verzenio. I wasn't told on Taxol not to take resveratrol. But when I did the research for myself, as I always do, there it was right there on PubMed-- resveratrol can negate Taxol. I took that bit of research to the cancer center pharmacists and they went quiet on me-- all they had told me to avoid was the usual St. John's Wort. They didn't know about anything else, I suspect.
But with Verzenio, we don't have decades of literature like that. So it's kind of a crap shoot, taking supplements to improve QOL. And yet we need a little help with QOL, now don't we?
I don't know why researchers can't come up with cancer meds that have side effects like euphoria and toddler energy.
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Luce have you read this story? Do you think it’s legitimate? Does anyone know if this protocol has worked as well with other cancer patients.
....it seems too good to be true, as it reflects everyone’s hopes and dreams...
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yes, I believe anthelmintics—fenbendazole, mebendazole, albendazole, etc.— have anticancer properties. I’m planning on making at least one of them part of my protocol.
Joe Tippens also was on a Keytruda trial, though, so the two treatments might have been synergistic.
UC San Diego is using mebendazole in conjunction with Keytruda in their precision oncology program
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thank you for the explanation. Cure-ious mentioned a clinical trial...I must have missed that part on his blog...
Seems all too good to be true...I’m starting on his protocol ASAP in conjunction with chemotherapy
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i'd be a bit careful with delta tocotrienol during chemo. maybe eat sunflower seeds instead? the vitamins in his protocol come from a mouse study, i believe, where mice with those added vitamins reacted favorably to fenben, and the mice on a sterilized diet without added vits didn't. but the sterilization might have killed the natural vitamins?
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thank you for the warning Luce....good luck with your new protocol! Please keeps us informed on any developments....
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https://www.cancertreatmentsresearch.com/fenbendaz...
More info published about our favorite subject....
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I like Daniel's website, but to sort-of stay on topic, here's a study that makes me hope anthelmintics may enhance CDK 4/6 inhibition. Different cancer type but still:https://www.spandidos-publications.com/mmr/19/4/2921
(I don’t have a new protocol yet. Still on Verzenio but not feeling good, and TMs rising.
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Has anyone heard of taking a reduced dose like 50mg in the morning and 100mg in the evening? I currently am on the 100mg tabs twice a day, and I thought if I get another dose reduction to try the aforementioned dose schedule so I would take 150mg total instead of 100mg. Just a thought.
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chemokaze: if you go that route, I'd highly recommend taking the larger dose in the morning (although I suspect the poit of such a regimen would be to minimize daytime side effects?): it's been shown in mice that taking cdk4/6 inhibitors in the morning is more effective. This is clearly more crucial for palbo(which is taken once a day), but I would not go with the larger Verzenio dose at night given that finding.
https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.3000228
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Luce- do you think this circadian difference is important for other meds as well? As in Afinitor ? I always took palbo at night since it made me tired. I take the afinitor at night also- but, could change it it would work better.
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I think circadian rhythm is important, even crucial, to everything, but we don't yet know how when it comes to taking drugs. Even the above study is mostly about circadian dysregulation rather than palbo timing. So I have no idea. I'd just try palbo in the morning if I didn't get the desired results when taking it at night, or if I became resistant. Tweaks can be worth trying. If nighttime works for you, and works best because of fatigue, maybe don't “fix" it? And I'm not aware of any circadian rhythm studies and Afinitor, although there was a circadian rhythm and cancer paper in some journal a few months ago. I'll try to find it. But maybe if I had been on palbo and doing well but eventually progressed, trying it againafter a drug holiday AND in the morning and with a meal might be worth it? Or, if I were on a new once-a-day treatment but didn’t have the desired response, maybe playing with timing (if one ha the time) could be worth it? Just a thought.
Also/but, since mice are nocturnal, reverse scheduling may be what's effective in humans, so your nighttime dose may have been best anyway I guess my point if any would be that tweaking things like timing may be worth trying if you are low on other options.
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Luce- good point about the mice being nocturnal. I may try daytime- would make life a bit less complicated to take the meds with breakfast since I am always home for breakfast if not on a trip.
Yes, I’ve heard of CDKs working again after a holiday- so far I think very few if any practicing MOs believe this- hopefully a study is underway.
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I wouldn't change what you're doing UNLESS you are not responding (sufficiently) and have reason to hope it'll improve your response.
Chronopharmacology is little studied. And the palbo/morning results were in mice. Combining humancancer cells and nocturnal lab animals does lead to confusion, at least in me.
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Hi Luce,
getting back to menbendazole-type drugs, and whether they can synergize with CDK4,6 inhibition, below is a chart of some kinases that are inhibited by the drug-interesting that this includes CDK7, which as we've discussed many times has been reported to be a promising target to hit after the cancer becomes resistant to Ibrance. And having a CDK7 inhibitor up-front, could that delay resistance from developing? good question, but there isn't even a trial addressing that cuz CDK7 is just in phase 1, plus the CDK7 inhibitor in trials isn't even oral (tho one is in development) and we don't know what it will have in terms of side effects. But for mebendazole, is the IC50 sufficient to consider this as a possible physiological target? these drugs are not very soluble.. FYI, DYRK1 is also supposedly a kinase that controls gene activity, somewhat like CDK7
And of course these drugs also inhibit microtubule polymerization, and have effects on immune cells, so who knows what they are doing in the body..
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thanks for your highly-valued and -valuable scientific input, as always! I may try fenben or mebendazole soon, despite many remaining questions , since there's anecdotal evidence they help with effusions and ascites. Those (and edema) were very bad in me before Verzenio kicked in (and I think are all related to VEGF). And there was nothing that SOC could offer at the time (a year ago) other than draining, which never helped for more than a few days. Good night
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Hi everyone, UPDATE !
l got the result of my first CT after starting treatments with Abemaciclib(verzenio)+ letrozole and my research drug Ly 3023414 .I had 25 percent reduction in size of my 2 tumors on liver and the sole one in my chest after 8 weeks of treatment . I hope to hear good news from each and everyone of you! Have a blessed weekend.
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ailurophile: that’s great! Congrats
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Great news, Ailurophile!!!
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Awesome and exciting news, Ailuorphile!! LY3023414 is a dual PI3K and mTOR inhibitor, so it is an option alternative for Alpelisib. Do you know if your cancer has the PI3KCA mutation, or is it just included to prevent that mutation ? Do you have side effects? like nausea and fatigue? How much of the LY drug are you taking? thanks for the information!!
PS In reading about your trial, their main goal was figuring out the dose for phase 2 studies- sounds like they've nailed that part already!! trial expected completion this month, hope it progresses to phase 2- there is an option with fulvestrant, but it does not include a CDK4,6 inhibitor in that arm
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Ailurophile,
Hmm, I just noticed that Lily dropped the PI3K/mTOR inhibitor drug that you are taking, just a couple of days ago:
https://www.fiercebiotech.com/biotech/lilly-dumps-...
I'm sure you can still continue to get the drug through the trial, however your great results could very well just be due to the Abemaciclib-Femara combo alone. Will they be forthcoming about the results of the trial thus far, in terms of whether the drug was or was not helpful and especially what the side effects are? One issue is that the increased blood sugar side effect that is seen with Alpelisib and other drugs in this class is due to a direct hit on the PI3K kinase- that does not seem to be a side effect with the drug you are on- does that mean its not hitting the target as well? It will be interesting to hear the recommendations of your doctors, don't know what they do when this happens mid-trial, altho the drug no doubt remains available to the patient if they want to continue with it.
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Ailurophile - wonderful news!! Glad to read your encouraging news 😊0
