Abemaciclib Verzenio for Stage IV
Comments
-
chats: that's great; i love it when the establishment (and their conclusions) get/s challenged. i'd been thinking about approaching constantine with some keytruda-combo questions. maybe i'll get around to it.
0 -
Thanks, Chats! I don't have time for other blogs, but would be interested to hear what Constantine thinks about a recent report that Abemaciclib, but not Palbociclib or Ribociclib, also inhibits the GSK3 kinase, which turns on a potent oncogene called beta-catenin. Initially I was quite concerned; we don't want to be turning on a pro-metastatic factor as a side-effect of a drug! Even if the primary effect is tumor suppression due to inhibition of CDK4, would this other effect potentially give us problems down the road? Cripes, the drug has not been in humans for very long...However, I then remembered that another much older drug also turns on beta-catenin- lithium- which has been given forever as a treatment for bipolar patients, yet certainly does not predispose them to developing any cancers. So, would be interested in his thoughts. Some have argued that rebound effects can happen from these kinds of off-target effects...
https://www.ncbi.nlm.nih.gov/pubmed/?term=abemacic...
PS Also, anyone on Abemaciclib notice any improvement in their bipolar symptoms?! LOL....
0 -
cure-ious: good lord.
yep, i feel like a lab rat. especially with regards to adding keytruda, or even trying to figure out how to make these meds work longest and best. i basically read everything i can find and draw my own conclusions. it's exhausting.
i strongly feel at this point that quiescent cells need to be addressed somehow. (there was a whole paper on cdk-4&6 inhibitorssomewhere that stressed the need for novel combination therapies.) currently, i am wondering if alkalinizing tumor and terrain is the way to go. i wish my oncologists were adventurous enough to at least wager a guess and give some off-the-record advice. and i have naturopathic ones, too. but they are mostly overwhelmed with patient care, not with trying to design the most cutting-edge program for those of us who can't wait for standard-or-care recommendations to catch up with emerging science.
0 -
Luce, I couldn't stop researching all of this stuff if I wanted to, just like you, its in my blood- however, this can also get you way off track, guessing, and that's is why we do clinical trials. I myself intend to move onto Abemaciclib when Ibrance runs out, and try to work that CDK4 inhibition for as long as possible. There are too many spinning wheels, don't get distracted from the big picture. You have something great that works, and are focused on figuring out what to add to it, to try to extend the response. Don't worry, be happy!!!
0 -
cure-ious: yes, it is working for now, but i am already almost 6 months in (as monotherapy, the response window was 7 months, i seem to remember), and need to do something to make it keep working. so either keytruda or messing with diet or both. else, it'll just quit on me, and maybe soon, and i have no other acceptable-to-me option at this time. i was almost dead a few months ago and the symptoms of being almost-completely-unable to breathe were pure hell i would never wish on anyone or want to experience again. i know that's where i'll be back to as soon as it quits working for me. i can't just wait for my oncologists to come up with something, because they already told me there wasn't anything for me at ASCO. so, no, unfortunately, i cannot just sit back and enjoy. also, while i am much better than the near-death state i dwelled in earlier this year, i am by no means well and only minimally functional.
0 -
Curious- the Susan Carlson quilts are gorgeous and inspiring. Quilting is my happy place currently- am addicted to buying fabric.
I have the same plan to switch to Abemaciclib when the Ibrance stops working. However, my MO said she would not do that. Hopefully time will show it is a good option.
Also eating much less sugar and grain/potato carbs- not near ketogenic though.
0 -
luce, your last sentence describes me perfectly. The tortuous breathing. I was near death too. Yet I am much better and appreciative but I am very far from my normal self. My onc also said no to V after I. I hope to convince him but I hope it will be a long time before I need to. Like you, I don't feel I have time. I pray for you, me, and all of us. Thank you and Cure-ious (and others) for researching all of this and posting here.
0 -
Luce- yikes- median 6 months?! Did they give a range? Perhaps the median time to progression is increasing now as the followup goes on?
Nkb-You do quilts?! I started when I was first diagnosed, just put 2 in squares of batik into panels and made a big wall hanging , and then quilts using Kaffe Fausset fabrics and last summer I got excited with some Liberty of London fabrics and made some dresses for my daughter. Now I'm trying a whale wall-hanging in batiks in the Sue Carlson style. I have yet to learn how to free motion topstitch, I'm afraid to wreck everything at the end and don't want to have to rip it all out!! But will have to learn to finish up this project..
But, returning to the question at hand- do you know why your MO would not be in favor of moving from Ibrance over to Abemaciclib? I think mine will be pushing Affinitor-Aromasin and not sure why not Faslodex-Ibrance/Abemaciclib, plus throw in some immunotherapy if it looks like it can work when taken with a CDK4,6 inhibitor? I don't want to have to wait too long to try an immunotherapy of some kind...
0 -
cure-ious: 7 months as monotherapy. could work longer in me because i am not as heavily pretreated as trial population was.
anyway, i am looking into ways to possibly enhance response and/or duration, of verzenio alone or in combination with keytruda. i need a scientist or medical doctor to bounce my ideas off. anyone? by phone, preferably.
too busy today. working.
0 -
Luce- hoping that the median of 7 months includes the cohort of people who it didn’t work at all in and as time goes by that will be teased out and numbers will be better.
Cure-ious- I’ve been quilting for about 2 years. I love liberty fabrics and Kaffe and have one of his books. I did walking foot quilting on a wall hanging for my son and am taking a free motion quilting class in August. I want to learn probably fusible appliqué also. So far have been YouTube learning which is quite wonderful. I will PM you a photo of the wall hanging.
My MO said she would not change me to a different CDK4/6 however would consider a CDK 7 or 12 should they be available at the time. She doesn’t think staying in the same “class” of drug would be effective. I’m just hoping the Palbo works long enough to have options other than chemo or affinitor. I will discuss further next visit.
0 -
Very interesting post on the topic of the acidic tumor environment and the effects of baking soda. A lot of people get misled by the fact that blood ph is buffered and constant, and jump to the conclusion that adding an alkaline substance or buffer will have no effect on the tumor microenvironment. The tumor microenvironment is not subject to the ph buffering (ie stability) of the blood, if it was it wouldn't become acidic, and the tumor microenvironment has been proven to be affected by alkaline substances consumed, or buffering agents given by IV.
0 -
husband: you are correct. One of the studies explains that, and gives dosing suggestion. I'll post those and my continued thoughts on that in the next few days. It gets even more complicated. Happy to brainstorm over the phone
0 -
Ok, y'all... I just got my blood work through the patient portal as I usually do. My CA-15-3 went from over 1000 to 7.3. CEA went from over 14 to 1.5. This is the first test of markers since starting the verzenio about 5 weeks ago. Has anyone else had such a stark response? I will believe in miracles until I see my doctor Thursday am.
Miracle? Or anomaly? Mixed up tubes? Botched blood work?
What do you think?
0 -
CL: congrats on being a superresponder
0 -
CL - It is not common to get such a strong signal with TM's, even when the stuff is working. It should give you well deserved peace of mind ... something we rarely get from TMs.
>Z<
0 -
Thanks Luce and Z. I wish I had a piece of mind. I have NEVER responded so well and quickly to a drug before, in all the ten years. I am having a hard time embracing this. Why didn't it respond like this in December when I was on the full dosage verzenio? How does this happen? I have only been in the normal range once since diagnosis. I am very cautious and I am having a difficult time telling myself the good news. What a dilemma.....
I will keep you posted!
Therese.
0 -
CL: are you on a different endocrine drug now than you were back then?—Verzenio seems to work much better with Faslode than alone, for example. My oncologists claims he has several patients who become and stay NED on that combo.
Or maybe you have inadvertently cracked another aspect of how to optimize these drugs, perhaps through diet or an OTC drug or a supplement.
Yes, dokeep us posted!
0 -
Hello ladies, I'm following this thread with interest. Currently we're dealing with a rogue right breast via other radically ferocious means, but when that has been handled, I'll be hopefully be back on some kind of coasting platform (or not ?) - which I am interested to see if it will turn out to be Abemaciclib. Not approved in France yet last I checked. I see Celebrate L, that it looks like you are having a good response ? It doesn't seem like much grand splashes of NED have found their way onto this thread yet, only terrible side effects. Hmm. Well I wish you pioneer ladies great courage and success.
Luce you say your onco has gotten people to NED combining Verzenio and Faslodex ? Intriguing.
0 -
amarantha: if i still had a primary breast tumor (any stage), i would get cryoablation (cryosurgery).
0 -
Hi ladies,
I just wanted to report my experience so far with V and Faslodex. I've been on this combo for six weeks now along with the usual Xgeva. So far I find it generally tolerable, I only dread the day it quits working for me If it is actually working now.
Side effects: diarrhea almost daily but still manageable; headaches that can get really bad; general feeling of malaise and lack of energy that hits all of sudden; and my worst symptom is sudden hot flashes. I had my ovaries removed when I had my baby almost two years now but after I was done with the ibrance things seemed to be controlled a bit. With the new combo the hot flashes are out of this world!!
I'm not sure if it is actually working.. my tumor marker only dropped 4 pts. I have scans in another 6 weeks which I always dread since the last three lines of treatment didn't make it past that first set of scans
I'm trying not to dwell too much on that in the time being and enjoy the convenience of being treated at home except for the Faslodex/ Xgeva of course.
One random thing, the past couple of weeks I have been craving chocolate so much specifically nutella, which has always coincided with tumor getting out of control and treatment failure.. I'm sure there's no scientific explanation for that, it's just an observation. Anyone else had something similar?
On a différent note, I was thinking wouldn't it be nice to add a “flag this post" option next to the “report this post"? I'm sure I'm not the only one who finds the plethora of information you all contribute invaluable and worthy of being reread. I can't keep track of everything...what do you think?? Maybe the Moderators can help with tha
0 -
NO: i wouldn't worry about whether it's working yet; i seem to remember that median time to response is something like 3.7 months. true, that response was determined by scans not tumor markers, so tumor markers might show a response sooner than a scan, but a slight drop so soon isn't bad, in my opinion. also remember that stable disease is more often achieved than partial response, and isn't to be sneezed at either.
i started hotflashing about two months ago. i am very annoyed by it, especially at how they fragment my sleep at night. i am on verzenio monotherapy, though, so ascribe my hot-flashes and dramatic drop in estrogen to the (low-dose) cyclophopshamide chemo i was on between november and mid-february. it looks to have triggered premature medical menopause in me.
i have tried sage tea before bed but haven't noticed a difference. also, sage may have phytoestrogens, so i am not necessarily recommending it. i black cohosh may be the safest herb for hot flashes since it does not appear to work directly hormonally. i haven't tried it yet. my oncologist offered effoxor, an antidepressant, or gabapentin, an anti-seizure medication.
no, no food cravings here. and i have never noticed a pattern with progression. i am looking into how to enhance verzenio by metabolic7dietary means, though. i think just verzenio is not enough since stem-cell-like quiescent cells seem to survive verzenio, just like they survive chemo and hormonal therapy, eventually making our cancers progressively more aggressive and harder to treat. we need to figure out a way to address those. i think diet might, or some repurposed drugs. am totally overwhelmed with research and decisions right now but will keep posting what i find. in the meantime, high-does probiotics (20 billion a day minimum, preferably at bedtime, high in bifidobacteria) may be very important.
(to check supplements :
https://foodforbreastcancer.com/
https://www.mskcc.org/cancer-care/diagnosis-treatm...
https://examine.com/supplements/
remember, those websites won't tell you if or how something may interact with verzenio. )
0 -
Luce, outstanding links! I definitely have to read more about those links. I liked how they were backed with scientific evidence. Thank you. I am on mono therapy with verzenio. I have been on fulvesterant, twice already and developing resistance. So, giving that a break for now.
NouzayO, For me, a drop of 4 points in the first month would be awesome. I also agree stable is good. Give the medicine time to do its magic. Our bodies are so complicated.
I would agree that a flag on the posts would be beneficial. I also think, a like for a post would be good too. Sometimes, I just have energy to read, but would love the person to know I am thinking of them.
Therese
0 -
hey all, well my intuition was right, again. It was all an error. My tumor markers are now over 1700. So, things don't look too good for me right now. My liver enzymes are a little elevated, but acceptable. At least for several days, I was thinking my cancer is under control. It put a smile on my face and a little kick in my step. It felt good, so I am going to keep thinking that! Now, just waiting for the liver biopsy to come back. I think they are waiting until they get all the results back. Ughhhh, patience......
Have a good weekend. I am going to celebrate life!
With courage, hope, faith, trust, love, joy and peace,
Therese
0 -
I am sorry to read that. We are all rooting for you no matter what.
Did they tell you how such a mistake was possible on their end?
0 -
CL: sorry also! glad you are taking it so well. what may be your next step? here's a somewhat-intriguing , very-early trial. only phase 1, though, and in arizona, and last updated in april, so not sure if still recruiting. also, not sure if responders could stay on this drug long-term:
https://clinicaltrials.gov/ct2/show/NCT03201913
0 -
Luce and Daniel, thanks for the thoughts and support. I think the blood was put in the wrong tube, or mixed up with someone else's, but most likely the former. We are all human. If it was a mix up, I would have felt sorry for the one who got my results! Plus, it felt good for me to "think" I am cancer free.... even for a couple days.
Luce, my next step is to wait for the liver biopsy report and genetic/dna testing.
That trial would be a possibility, but my platelets are too low. Problems now with new trials, as either I don't qualify because of my extensive treatment, liver function, or platelet count.
Trying to take some supplements for the liver to try to get those numbers down. Don't know what to do for the platelets. Any ideas?
Therese
0 -
CL: i have no personal experience with low platelets, but in some of the FB groups i am in, people claim theirs improve with greens. google it! interestingly, melatonin came up when i just briefly did. both greens and melatonin may be good for you anyway right now.
0 -
off-topic, but possibly important (and possibly safe) for those of us who are estrogen-deprived and/or have bone mets:
https://onlinelibrary.wiley.com/doi/abs/10.1111/joim.12805
in plain english:
https://www.sciencedaily.com/releases/2018/06/180621101329.htm
and there's more:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4354898/
https://www.ncbi.nlm.nih.gov/pubmed/27095067
https://www.nature.com/articles/boneres201746/tables/1
(so L. reuteri has dramatic impact on bones, as well as potentially skin and hair. anti-inflammatory, too, and possibly immune-enhancing. i have shifted my probiotics consumption heavily towards bifidobacteria but will probably add this strain. BUT it clearly raises hormones (testosterone, T4, probably estrogen), so this may be a risky strategy. what isn't, thg.)
0 -
I was reading back through the last few pages, catching up on this thread. Luce, I think there is something to the alkaline concept. I take 1T apple cider vinegar nightly and a full lemon in warm water in the morning - both for alkalinity (and ACV for probiotics as well). Grapefruit is also alkaline but a no no on nearly all cancer treatments. My all time favorite and (in my mind) most potent alkalizer is Japanese umeboshi plums. You can buy them at Whole Foods - not cheap but much more effective and healthier than many drugs - for belly aches, acid reflux, migraines, overall health, etc. They are small like the size of a large green olive, are super sour and salty (pickled in shiso leaves and sea salt) and only 1 is necessary. I also use umeboshi vinegar on salad on occasion with olive oil and have pickled vegetables with it in the past. I have also dabbled in alkaline water but haven't fully ramped that up at this point. I was having a hard time because the instructions I found online were to drink it "all day long", except not 30 minutes before or 2 hours after meals or when one takes medications. That seemed to wipe out most of my day and I only found a few hours in the night to drink it.
0 -
JFL: great post, thanks. sorry you got this so young! yes, umeboshi plums and -vinegar are part of my diet, especially when nauseous or getting a migraine. (which i get a lot since cyclo sent me into premature medical menopause.) a friend (the same one who makes natto) here in town grows and pickles them, and i first encountered them as a teen, so like them. i am wondering if those measures are enough to alkalinize tumors and -environment, though. one study gives 800mg baking soda per kg as recommendation. that would be difficult and probably hard on heart and kidneys. and a ketogenic diet is much different from an alkaline one, as it changes the metabolism of the tumor cells, and its end product, lactate. so very powerful when done right, i think. now, doing it right is much harder than eating an alkaline diet and drinking AC vinegar and lemon water. (all recommended by all, including the clean keto folks, of course. they also recommedn umeboshi, by the way.) here's another tricky part: one might not want to alkalinize tumor and environment without having a cell-killing strategy, since quiescent cells that normally lie low during chemo, endocrine, targeted therapy, etc., become active when their circadian clocks are restored. so tumors can become more aggressive. but if a treatment is working, this awakening will give the treatment a chance to kill those cells. i am trying to make sense of the last sentence in context of a keto diet, which is NOT normally known to make cancer more aggressive, so it might be another factor of an alkalinizing protocol that is doing that, so maybe keto is not even needed? some kind of calcium (TUMS are calcium, but an inorganic one,, calcium carbonate and maybe i'd go with an organic one that is better absorbed instead?), plus some quantity of baking soda or something that acts like it, plus keto diet?--i should write to dr. gillies again.
you all might wonder why i am obsessing about the above so much. it is because i have read in a very convincing paper that verzenio does not kill quiescent cells, just like all those other therapies we burn through don't. so while a true cure is likely only effected by an individualized immunotherapy protocol like judy perkins had, i am trying to make verzenio monotherapy work for as long as possible. or, were i to add keytruda, i would want to create optimal conditions for that combo to work. and, as you say and those early studies in mice are showing, there is something to the alkaline tumor environment thing.
0
