Abemaciclib Verzenio for Stage IV
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Interesting about the watery eye phenomenon. I have noticed a drippy nose when I sit down to eat lunch or dinner (not breakfast, perhaps because we have that shortly after arising - excess fluids may drain more easily when lying on your back?)
I took a break from my 100mg bid regimen over Thanksgiving due to needing radiation. Holding the medication was debatable however it was thought best to not suppress cell growth in order to let the lesions be more susceptible. My cervical/upper thoracic spine were treated resulting in a horrible sore throat for over 2 weeks. It hurt to swallow. I lost about 5 pounds which would have been greater except the only things that went down easily were frozen desserts...
Loose stool often likes to occur after I go to bed. Something about stretching out horizontally seems to let the intestines relax and let go! At least this allows a small level of predictability.
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cure_ious: i used to buy custom probiotic's five strain bifidobacteria, but it's a powder not a capsule, and the flavor made me feel sick when i was dying and couldn't eat. so while it is probably still the best (and no more expensive than others, if you look at by weight), i am now taking either renew life's ultimate flora 80 billion, or their lower-dosed 50 billion, or garden of life's dr. formulated once daily ultra colon-immune system 90 billion. jarrow's bifidus balance+FOS also has several bifido strains but is low-dose, so maybe take several caps?--it is relatively inexpensive. i think 20 billion/day is minimum. supposedly, we lose 12-20 billion a day.
i have no side effects from verzenio other than watery diarrhea several times a week. while, sure, that leads to occasionally crapping my pants, being mostly housebound, and sore tissue and such, it doesn't bother me. i was dying prior to verzenio and will be again once it quits. and i am only in my 40s. so no complaints about verzenio from me. my oncologist thinks it is the best of the cdk-4/6 inhibitors, and no one really knows why. lily just kinda lucked out.
while i was taking about 40 supplements a day prior to verzenio, i have taken myself off almost all of them, since antioxidants may interfere with it. i will introduce those that i think might be synergistic with verzenio once it starts quitting on me. i'll have to figure out which ones those may be. probably the ones that affect pik3 and mTor. probably won't find anything powerful enough to reverse verzenio resistance but i'll try.
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Thanks, Luce, I dug around in my fridge and found that I still have most of a bottle of the five strain bifido powder you had suggested way back when, so now I'm going to actually take it! (Well, not all at once!) I had stopped cuz it tastes so awful, but maybe mixing it into some juice or yogurt will help. The only other supplements I take are calicum and Vitamin D (gummies!) and, yeah, that's it. I should cut out sugar and move over to nighttime fasting to further drop sugar levels, which maybe as good as taking metformin. we can't stop progression, but hope to keep it at bay a bit longer. I am sure the bifido is helping you cuz the Abemaciclib is very strong CDK inhibitor and if its increasing PDL1 and the tumor infiltrating lymphocytes, then your own immune system works better even without the Keytruda.
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i have been practicing time-restricted eating for at least 5 years. i have a 6-9 hour eating window. i used to be super-strict (6 hours, always) for several years but now am a bit more flexible. still, i never eat after 8pm (generally not after 6), and i always wait at least 14 hours until i eat the next day.
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Hi. I am making a list of options for when I progress. I am currently on Letrozole/Ibrance 100. My MO said no to my question of maybe Faslodex/Verzenio..said Verzenio too similar to Ibrance. I mentioned it was more CDK4 inhibitor..but still no. But my MO also said "never say never". Ha. ( Especially since it passes thru blood brain barrier and can be monotherapy).
So I think when that time comes, Faslodex and stay on Ibrance? Thoughts? Anyone currently on Verzenio after Ibrance?
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HI Sandi, Yes, what's best for next? At the last ASCO meeting they reported that only around 5% of those progressing on firstline Femara-Ibrance have resistance to CDK4,6 inhibitors, although apparently everyone eventually does develop resistance. So Faslodex alone (my onc's standard) is a no-go for me, that's not going to last very long. I guess I would want Faslodex-Ibrance or Faslodex-Verzenio, preferably the latter as it seems stronger, and it should still double the response time to faslodex alone. However, if the cancer has developed the activating PI3K mutation, then the Faslodex-Alpelisib is what is needed. But if the cancer remains bone-only, can they even get enough material from the biopsy to test for the PI3K mutation? If not, do we just have to blindly pick something until this ctDNA analysis becomes available to everybody? Plus we still want the Ibrance included. New trials are testing the CDK7 inhibitors with Faslodex, and I think some are combos with immunotherapy that want to be considered for secondline. Too many questoins and unknowns to figure it out in advance, without knowing the specifics.
And after second line, I guess it all just goes crazy arbitrary!
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Hi Sandibeach,
I am currently taking Faslodex/Verzenio (100mg) and I failed Letrozole/Ibrance. Ibrance never did a thing but allow progression. The new combo has worked well for me for 6 months so far, with regression in the liver and stability in the bones. I also had been on Faslodex alone for 3 1/2 years starting 2011, which was also an issue, but the combo has worked.
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Thanks Cure-ious and sandilee.
The next time I meet with my MO, I will be better prepared with my questions. I know Faslodex will be next..just don't know what the combo will be. We did discuss the combo Faslodex and Alpelisib, currently in trial. (But only if I have the PI3K A mutation and if the drug is FDA approved.)
I am afraid of (1) starting Faslodex when I could lose my chance of being considered for the BYlieve trial (NCT 03056755) with Alpelisib or (2) starting Aromasin and Afinitor (mTOR pathway) and losing potential opportunity to use Alpelisib (same path, but PI3K alpha specific)..if you can only have one type or (3) going on a PI3K AKT, mTor inhibitor and then not able to go back to CDK 4/6 targeted therapies. (Sandilee, I will keep asking my MO why Verzenio is not a good choice after Ibrance, especially with a different anti hormonal. Maybe she is saving Verzenio for later).
Plus I am interested in the Aurora kinase A "Alisertib". Maybe Alisertib and Afinitor/Alpelisib plus antihormonal, like Aromasin? So much going on and I worry I will take a treatment that knocks me out for even a better one. Then you mix in ER mutations and resistance and what to take when.
I guess that is when you just wait for the inevitable progression (sigh), biopsy if possible, listen your trusted MO, seek a 2nd opinion and take a deep breath and exhale and move on.
We, as metsers, live in unbelievable times when potential life prolonging drugs are in clinical trials. I just want them now..all of them.
Crazy, right? I need some ice cream.
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Hello, I am wondering if anyone is taking Verzenio with chemo (off-label)? My MO mentioned this as an option but didn’t go into detail about which chemo
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Ice cream, whooo!!!
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Hi SandiBeach, I wanted to point out a trial involving immuno and faslodex for after progression on I/F, as was just posting to Pajim:
https://clinicaltrials.ucsf.edu/trial/NCT03280563
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Thank you Cure-ious. I have added that one to my Trial Bookmarks. The one that really interested me was the Fulvestrant (Faslodex) plus Alpalisib. I am hoping that even if this drug gets FDA approval, that I can return to a CDK inhibitor, like Verzenio.
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cure_ious: doesn't the new liquid biopsy, guardant 360, test for mutations?
i just heard from an md in denmark whose wife has breast cancer that disulfiram (+copper) helps prevent (any---i know, right?!) drug resistant, including (supposedly) cdk476 resistance. he urged me to add it to my protocol immediately. i was going to use it after i become verzenio resistant, but he claims it won't work well as monotherapy. he says he has this info from an informal talk with a leading breast cancer researcher but it not allowed to disclose his source and the researcher would not elaborate. side effect of disulfiram plus copper (400mg DSF in morning; 2mg copper at night, maybe take a week a month off) can be neuropathy. disulfiram (antabuse) can be bought online. completely incompatible with any amount of alcohol!!!
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Interesting, Luce!! I am going to research this, because I remember something came up last year about Antabuse, maybe it was for a different cancer type. I think you are also right about liquid biopsy for a Pi3K mutation assessment,
Are you doing anything fun over the winter break?!
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PS Here it is!! I knew I had seen this!
http://www.sciencemag.org/news/2017/12/old-drug-al...
https://ki.se/en/news/alcohol-abuse-drug-antabuse-...
Antabuse is prescription only tho, and does have side effects- I hope they are moving it into clinical trial, but as there are no patents on old drugs, maybe we have to push for this ourselves
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i am told (by both my oncologist and patients using it) that it can be purchased online. also, i found an old study that indicates one of its metabolites, ditiocarb, might be as effective. maybe that's easier to get or has less side effects? and to get antabuse, we can always feign a drinking problem. some of us don't have time to wait for new trial outcomes.
https://www.nature.com/articles/bjc201318
https://link.springer.com/article/10.1007/BF018773...
there's a trial going on. https://clinicaltrials.gov/ct2/show/NCT03323346 based on that and the footage you also found, i decided earlier this year that i would take this once verzenio quits. now my friend tells me i should take it before it quits, since the relevant scientists no longer seem to believe monotherapy is a good idea, but that it should be taken along with other therapies.
also, i think it's pretty cool that antabuse uses copper to attack cancer cells. i, for one, have high copper levels (which cancer likes for angiogenesis) since many healthy foods are high in copper. copper depletion with tetrathiomolybdate seems to work for many, but that drug is fairly toxic, and resistance happens also. i'd rather take a drug that uses copper as cancer's achilles heel than deplete copper in my healthy cells also.
actually, i seem to remember that the antabuse+copper protocol may help target PI3K. i'll post it if i find it again. i come across something potentially useful at least 10 times a day, then forget about it.
thanks for asking! this is what i am doing for christmas, haha! not exactly fun, is it?
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Oh the peaceful post-holidays!! The very best time of the year! eggnog latte time...
Antabuse resembles some other targeted inhibitors that can kill cancer cells, but it makes sense it'd be best in some combination with a different targeted drug, like an AI or Abemaciclib can arrest the growth of the cancer and weaken the cells, then the antabuse can kill them off. But without knowing that its specifically OK to combine with any particular drug I'd be hesitant to add it. At least until I better understood how it acts and why that would be synergistic to add it to the drug, and that side effects would be OK, etc etc. But its great they are in phase 2 already, and maybe will be reporting some early results soon!!
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another paper on cdk4/6 inhibition. not new, but i am reading and rereading papers, trying to guess at good supplement- or (repurposed) drug combos. this paper seems to indicate several possibilities: 1/autophagy may be an issue. fasting can induce autophagy, and while there's "good" and "bad" autophagy in cancer, it perhaps oughtn't be induced when one verzenio, since it may hasten resistance. (by the way, i went on a three-day water-only fast in august, and that was when my markers started to reverse course (from steadily dropping) and go up (still slowly enough to be considered stable) again. no idea if the two are connected but they could be.) 2/ oxidation is one of the mechanisms by which verzenio fights cancer. so high intake of antioxidants may not be a good idea.
just my thoughts. would love to have someone more scientifically-literate weigh in.
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Has anyone tried taking calcium polycarbophil for diarrhea? Sold under the brand name FiberCon, there are less expensive generics available, usually found in the ‘laxative’ aisle! The active ingredient absorbs water in the intestine which means it can work both ways - to bulk things up and relieve constipation or to make loose stool more firm. Folks with irritable bowel syndrome report good experience with these tablets.
Even just half of an Imodium/loperamide (1mg dose) slowed my system down too much, resulting in uncomfortable bloating. I’m looking for alternatives that willallow me to travel without always needing ready access to a bathroom at a moment’s notice!
I’ve also worn a maxipad on a couple of occasions in the hope that it might buy me a little time in getting to a toilet but then didn’t need it during those excursions. Products designed for fecal incontinence are not as numerous as those used for overactive bladder/urine leakage...
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hello - I just started taking some Metamucil a few days ago, just not in the habit of it yet - will let you know if it helps. Like you, I find that half an Imodium is too potent and sometimes makes me feel worse with bloating....sometimes I think the diarrhea is simmering down, but unfortunately salads, spinach raw or cooked, mushrooms, curry reek havoc for days! Now I'm thinking about trying the healthy greens into smoothies - maybe that will help tame the situation
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Hello all,
Well, it looks like I am done with Verzenio. My markers went from 783 down to 325 then to 330 then to 417. I was told to take a break for my vaca because of the incessant diarrhea. I stopped for nine days but then asked the onc if I should continue since he wanted to see one more month of blood work to see if the numbers continued to rise and I thought it would be a much more valid test if I was still on the drug. He was less than helpful. As I have mentioned previously, if I tell him that I am experiencing pain or diarrhea or anything, he comments that I "complained" about the drug so perhaps I shouldn't be on it.
I can't figure out what he wants me to do. I would think that he would want to know what side effects I was experiencing so that we could make an informed decision as to what I should do. He has absolutely no empathy, compassion or even a tiny bit of sympathy. I sure hope he never has to go through this. He wouldn't be able to handle it I'm sure.
Anyway, I decided to go back on the V but two weeks into it I woke up with severe pain from the base of my scull to my knees. All I had was Excedrin but that worked somewhat. I had also been having severe shortness of breath - a side effect that is listed on the Verzenio site as something to take very seriously. So I decided to quit again so that I could at least have a vaca of some pleasure. The first few days of my vaca I was still in some pain, had a massage, pain worse for a day then got better.
I told him of my experiences. A mistake. Once again he acts like I am such a pain the arse because I tell him this stuff. I have now been off everything since December 22 and I feel really good.
I just had a blood draw on Wednesday, Won't know what the markers are until Monday. My white blood cell count is extremely low. He is suggesting Xeloda next but wants all drugs cleared from my body and my white count up before proceeding. He said there is no point in my doing the Faslodex by itself since I progressed very quickly on it when it was flying solo.
I told him I wanted the Foundation 1 test which is now done with blood rather than a biopsy. He said usually that's done after all other drugs have failed. !!!!!????? Am I the only person who finds this reasoning completely wrong? Surely rather than putting me through 5 or 6 drugs with varying side effects, it would be better to do the Foundation 1 test and find out (hopefully) that there are certain drugs that are more likely to help with my particular cancer biology. I said since my insurance paid for it why not. He said he would do it. A struggle but I won.
I am so grateful for these forums because there is a wealth of real time information from others who are going through this. The clinical trials that get drugs to market are extremely small and limited. We are the real clinical trials. We are the ones on the front line letting the doctors and researches really know what works and for how long.
I would like to advise doctors to read our discussions. It would be enlightening for them. They might actually learn some important things.
Chats
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Chats, It's stressful to change MOs BUT yours sounds like a real @#$('ole(* ......
I am on xeloda and have been for the past 6 months....
of all the TXs I've been on this one is the best...I only wish that like some of the lucky women on this board I can be on it for the next five years....it's sooooo easy.....and tolerable....I'm lucky also because I'm not suffering from hand and foot diseases....just fatigue which can be fixed by adjusting the number of pills taken.
And During the off week, I get to feel completely normal....I just hope it keeps on working....
Foundation 1 results could be helpful, but I read recently somewhere that the results between Caris and Foundation differ wildly using the same blood....so it's really all phantasy land...
Two of my three MO's smiled when I asked them to do those tests...the first one did...but than she placed the results, the size of a yellow pages phone book in my lap, and said: here...you read this...see if you can make any sense out of it, and she was a leading MO at MSK in NYC.....my current one however said that he would use a blood sample when the time comes....so maybe things are improving
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Chats and Miomix- I am astonished at the attitude of your oncologists when it comes to Foundation One tests. I had one at my request a few years ago- when they first came out. That one didn't help that much because they hadn't developed any drugs that matched my mutations. In 2018 my onc suggested that I get another one with a new biopsy ( he wanted a BX of the liver anyway) because they had improved a lot. My results this time were extremely helpful, and put me on the Verzenio track that I've been on for the last 6 months.
I guess I am lucky in that my doctor listens to me and respects my ideas and concerns. He has been with me from the get-go- since 2007- and without the trust I have in him, I'm sure I wouldn't be doing as well psychologically. It's really worth a lot to find someone you can connect with on a personal level as well as someone knowledgeable with all the new treatment. Both are equally important.
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hi Sandilee, the reason why I'm so skeptic about the state of the arts is because the genetic test that was done revealed a few actionable mutations, one of which was the AKT marker, but when I was placed on Afinitor, the medication that should have matched that mutation, my cancer markers tripled and the pet scan indicated progression three months later. I didn’t get much benefit from Faslodex either, that matched my ESR mutation. Thus in my view the current “science" is no more than throwing darts on the wall and hope that they stick....therefore the roll of the eyes by my MOs that are aware of these ridiculous results.
I do have and always have had a great relationship with my doctors...as I am a very accomplished artist and they tend to respect that....but the truth is that when I read these posts, except for Zarovka's enterprising attitude regarding her treatments, everyone is prescribed the exact same medications in the exact same order. The variance is only based on ER, PR and HER2 status. Which leads me to believe that the results of these tests don't affect yet the treatments and worse yet, the end results....
Hopefully some real progress will be made soon with these tests and the corresponding TX....who knows maybe in our lifetime....
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Genomic testing is in its infancy. We can get a snap shot of any individual's genetic array, and we have some data on that relationship with treatment outcomes. But, we've got little bloody clue yet on what turns those genes on or off in response to treatment. There's epigenetic factors that continue to boggle.
So, as it stands now, the testing is for information compilation. I would never turn down a therapy based on genomic assay. NEVER. I might lean in one direction or another, but I've heard too many stories that begin like this, "Well, Foundation One said it wasn't supposed to work, but i've been NED for . . . ." I'd also take a shot at something that wasn't meant to do well, especially if I were in a position to need experimentation.
I'll tell you this - if money will provide the answers, we are in good shape. Institutions are throwing money at this research. Just dumping truckloads of the stuff. The researchers leading these initiatives are . . . sometimes dizzy with options. Just think about the institution that cracks it first. My golly.
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Maiomix, you mentioned that your current doctor would do the blood test when the time came. I am curious as to what that time would be? For myself, I figure I can find out something that might be useful now rather than waiting until everything I try has failed. I am no scientist but I can't see that there would be a difference in my genetic profile between now and then.
And yes. My doctor is an arse. I think he is one of those that has a God complex and doesn't want you telling him what to do. I am supposed to sit quietly like a good little girl and take whatever medicine he decides to give me. Please... I am so not like that and It seems to really piss him off. I believe that we have to listen to our guts and speak up. Who knows your body better than you? Intuition is a valuable tool.
Sandilee seems to have benefited from the Foundation 1 test and appears to have a doctor who is much more interested than mine in exploring whatever tool is available.
I am going forward with the test. What the hell. It will be interesting if nothing else. I intend to go on to Xeloda anyway regardless. But if that fails then I will see if there is anything in that test that I can try that might work. At this point we are just throwing spaghetti at the wall to see if something sticks. Maybe the test will show that linguine sticks better? LOL
Chats
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chats you made me laugh...your MO's attitude points to a strong sense of inferiority. Poor thing...and what if his you know what is small on top of not being loved as a child? That would explain it all....
as far as my updated genetic profile testing is concerned, it will take place when xeloda fails me, to see if I can go on herceptin, which I consider the only TX that works for years instead of months for 50% of the patients. When I proposed that I would be willing to be experimented upon, my mo didn't say no....just listened.
I'm also interested in Immunotherapy that unfortunately doesn't seem to work on breast cancer YET! But who knows maybe the researchers luck will change and they will actually come up with something that does soon. Kattysmith is currently participating in a clinical trial with an Immunotherapy drug at Md.Anderson that we all need to pay attention to. It might end up being a really fabulous T!
Meanwhile, if you have to, give X a chance...as far as I'm concerned I would stay on it for ever if I could. It's been very easy so far....I am more active now than I have been since the days of letrazole that turned me into a zombie. At times I feel like my old self again....
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Miaomix,
I am actually looking forward to Xeloda! From what I have read the SE's are not so terrible and I might get lucky and not get too many. He is starting me out on a lower dose since I react so harshly to drugs.
Faslodex alone did nothing but make me hurt and cause my TM's to rise. Verzenio actually did something for a while. However, it was a really hard drug on me. The 150 mg was so bad I couldn't take it and had to lower to 100 mg. But I never really felt very good. I wondered if I should continue on V because we have only had two months of rising markers. My scan showed no change from previous meaning stable? But the arse wants to move me to Xeloda.
I thought you had to be HER2 positive for Herceptin to work. I would gladly do Herceptin if I can being ER/PR positive since I also have read how long it works.
I hope Xeloda is as good for me as it has been for you. I am a high energy person and the Fas and V just beat me up severely. Since I have been off everything except Xgeva, I feel like myself again. So good to eat food that tastes like it should and to not feel like I am 150 years old!
Chats
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I have read that scans are what tells the real story. But then I read that scans lag behind TM's.
I would love to know which it is. Chicken or egg. LOL
Chats
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Chiming in here to agree that all the genomic testing is in it's infancy. Chemo sensitivity testing might or might not work, but there are very very few actionable mutations.
I've been wondering why my MO doesn't want to do a liver biopsy (I brought it up) and will ask him again but I think it's because the only actionable things they could find are PD-1 or whatever it is that apelisib works on. So it's not worth the risk to the liver.
Chat, you need a new doctor. If his reaction to you're telling him what is going on is to roll his eyes, that's not acceptable. He should be ASKING you what's going on.
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