Abemaciclib Verzenio for Stage IV
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chatsworthgirl:
when i was taking cyclophsphamide (a chemotherapy drug) and verzenio together for the first month, i could barely eat for nausea and inappetence. diarrhea from verzenio typicall sets in after day 6, as it did in me, so be prepared for possibly worse. a pleural effusion can make you feel tired and take your appetite away also; i have had numerous one son both sides, typically 2 liters each, and i am tall but build very small, so not much space in my ribcage. all that fluid was definitely making it difficult to fit food or liquids in there also. u had a pleurodesis on one side, and the other side shrunk from 2 liters to less than one liter (i am guessing here by the way it feels) on verzenio, but i only noticed improvements in breathing and functioning in month 4. monotherapy is slower and less dramatic, it seems. in combination with anti-hormone drugs, it may shrink your effusion much faster. someone here reported it took only a month for hers to go away.
appetite and nausea became better when i was done with chemo and only on verzenio but only really improved with a dose reduction (i went from 200 mg to 150). diarrhea necessitated dose reduction; mine would not resolve over time.
(wow, you are 30 years older than i am! good for you!)
CA 15.3 was 1367 in january. last month, 1123.
CA 27.29 was 1969.1. last month, 1626.2
CEA 59.2. last month, 31.6.
having blood drawn tomorrow. it takes about three weeks for me to get the results. no idea why but i'll ask. i would like them sooner.
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I am having good luck with marijuana edibles for my nausea, pain and it also is helping my appetite somewhat. I cannot inhale because I have a pleural effusion but the edibles are working. I know that some people prefer not to use that but I just needed relief, and it provides it much better than prescription pills.
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chatsworthgirl - Ablation (poking a lesion or two with a needle, heating it up till it dies) would not make sense with a lot of lesions. It is not what I am suggesting you research. You want to consider TACE or Y90. They inject either chemo or radioactive pellets into an artery and that will reach much of the liver. Your MO should have taken your question (ablation?) and understood that you were really talking about local treatment of the liver generally. That's their job. The fact that did not happen suggests he/she is clueless about the local treatment to the liver. That is typical. See a specialist.
>Z<
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Luce,
Yeah I'm old but I'm good!! LOL
Well I see those drops in your tms as very very good. That's a lot of points going in the right direction.
I'll post my results when I get them. It usually takes 3 to 4 days to get the lab work and I'm having the blood draw on June 6. I try not to think about it though because it just causes anxiety.
I need to take a bunch of B12. I have low RBC - anemia - so I am trying to do what will bring them up again. Red meat, B12, Vit A. Plus when I do take the B complex I have a much better frame of mind.
Talk to everyone later.
Chats
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Z
I will revisit this conversation with the onc. I agree that they are sometimes wearing blinders and only do what is standard of care.
I will rephrase my question and bring up the Y90. I have looked into that previously myself.
Thanks for your info.
Chats
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zarovka:
saw a new oncologist today who is not all that excited about combining verzenio with keytruda in HR+ bc. he thinks it might be worth trying, for sure, but he also thinks that that combo primarily benefits drug companies, and that there may be better combinations for keytruda on the horizon. i have no opinion on this, am simply reporting his. anyway, could you please actually link that nature article you mentioned a while back? i have read many articles on nature and searched the site for teh one you referenced, but nothing really fits your description. thanks!
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Luce- I'm glad your MO thinks better combos are coming!! could you ask him which ones? ASCO released preliminary data for Keytruda-Abemaciclib with only about 14% response, although still very early days of about six months into the trial. But still, nothing exciting so far
However, here is a cool clip about Abemaciclib for all of you on it- it sounds like its the best of the three?
https://www.onclive.com/insights/cdk-inhibitors-br...
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cure-ious: briefly, i need to go to sleep: he did not elucidate me further at this point on upcoming combos. (and he backtracked when he heard my prognosis--i look much healthier than i am--so nothing super-soon, or maybe not soon enough for me. i'll keep y'all posted if i hear anything interesting, tho.) first consult. we'll talk more in three weeks, after he gets back from that conference where there may be more JCPE trial. but he agreed that there probably won't be much data yet that will be helpful with my decision whether to take it or not.the one you mention has been out since last december, hasn't it, or is it newer (and still same)? and it isn't as bad as it sounds, because: "At a 16-week analysis, the objective response rate (ORR) with the combination was 14.3%, which was less than the response rate seen with single-agent abemaciclib in the MONARCH-1 trial (19.7%).2 However, the trial investigators noted that the median time to response for abemaciclib has historically been 3.7 months, suggesting the efficacy is likely to improve with longer follow-up. At 16 weeks, the ORR in the MONARCH-1 trial was 6.8%."
thanks for the second link; it's what dana-farber figured out last year ago also (or same study), that CDK4/6 inhibitors don't just (possibly) make tumors "hot" or mark them frorimmunotherapy agents but elicit an immune system response in their own right.
http://www.dana-farber.org/newsroom/news-releases/...
too tired to get into this further, but i am getting my OTHER onc to unlock some newish research papers for me tomorrow.
want to read (but can't unlock):
https://www.ncbi.nlm.nih.gov/pubmed/29731395
read earlier tonight. this touches upon what the lady in the onclive interview you posted is talking about:
http://europepmc.org/articles/pmc5347397
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Hoping this will be approved in Europe soon.
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Luce- I was referring to the (slightly) updated abstract for the Abemaciclib-Keytruda JPCE trial from the upcoming ASCO 2018 meeting. At 24 weeks, they are still saying a 14.3% ORR, which I thought sounded disappointing it hasn't bumped up. But obviously too early to tell...
https://meetinglibrary.asco.org/record/161801/abst...
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here's a link to all ER-positive MBC abstracts: http://abstracts.asco.org/214/CatAbstView_214_814_...
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these abstracts have much information, if one has the time.
I was happy to see a trial starting up to test a triple combo: Faslodex-Ibrance-Immunotherapy (Avelumab, anti PDL-1)"
http://abstracts.asco.org/214/AbstView_214_216307....
as a secondline treatment, designed to come after Ibrance-Femara fails.
So, its like JPCE trial (Abemaciclib-Ketyruda), except it also includes Faslodex (duh!!).
Even better would have been Faslodex-Abemaciclib-Atezo, but we don't get to design these trials!
Maybe preceeded by a short period of Taselisib to knock down the PI3K...
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cure-ious: thanks for clarifying, and thanks for all that info! i don't have the time yet will definitely read through it, some before seeing my other onc today.
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Go Luce - I sense you are being very proactive about getting good MO's to advise you. Go Girl! And report back.
And thanks Cure-ious. Although I am huge immunotherapy fan, I am having a very hard time getting excited about PDL-1 inhibition. These articles are very useful. Will read soon but I got my chemo IV today and yoga is the priority.
>Z<
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i like my regular oncologist but think two are better than one at this point. they are in different hospital systems but know each other and are happy to work sort-of together. the newer one is an immunotherapy geek.
so at this point, it is simply impossible to tell if and how much HR+ patients may benefit from keytruda+verzenio. it'll be a year or so before we get a good idea, i think. there's one lady on one of my FB groups who became NED from keytruda, but she had been TN at that point (had started out HR+). She also went into a coma (presumably because the doctors didn't recognize that she was having an autoimmune reaction) and emerged with her thyroid (and maybe even adrenals) forever knocked out, but so-far cancer-free.
while there may be that rare case amongst HR+ population also, from what i understand, the hope (in my case, for example) would be that keytruda might make the verzenio response more durable. no one knows if that could happen, and the potential side effects are a steep price to pay, especially if that doesn't happen, but that's the idea at this point. i am still undecided.
since i am having what could be (no way to tell without imaging (with imaging, a response is a shrinkage of 30% or more; anything less (but no uptick) qualifies as stable disease) and my tumor markers have not gone down dramatically) a response (and not "just" stable disease) on verzenio, though, i am extrapolating (pretty much baselessly) that there is a chance that a response to verzenio is mediated by its immune-system recruiting effects (whereas stable disease may be due to just CDK4/6, etc. (etc. because it looks like there are other kinases being inhibited also), inhibition), so perhaps the responders (only 17.5% on monotherapy) are those that would benefit from addition of keytruda? let's see what my next tumor markers say, though, since the drop has been slowing since the first month. if they are flat now, i am more likely to be in the stable disease group (about 22% on monotherapy).
(it is kind of concerning that the ORR in the JCPA is only 14% at 24 weeks. if i remember correctly, response to verzenio (with anti-estrogens, i think. too tired to verify right now) was about 20% at 24 weeks. so no idea what's going on there.)
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Great video from Dr. Balsaga (who runs SANDPIPER trial at MSK) about how they can detect PI3K alpha mutations in circulating tumor cells, they can tell if the meds are working without need for scans, love this!
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Another discussoin about SANDPIPER trial from ten months ago- at that time, they had already about 36% response rate for cancers with PI3K mutations. This would be way better than doing AA, if you have the mutation. These mutations are one of the most common ways that you get progression when on Ibrance-Femara:
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Also, Luce, there is a phase 1 trial for a PI3Kalpha MUTANT-SPECIFIC inhibitor drug, added in combination with Ibrance and Faslodex- but just phase 1 and only at MSK. Something to keep an eye on, because if it works, it should have far fewer side effects, because the wild-type PI3K alpha is still active in normal cells. Only the cancer enzyme gets inhibited..
https://www.mskcc.org/cancer-care/clinical-trials/...
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Wow. Thanks Cure-ious. I will get to this stuff.
>Z<
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cure-ious. yes, thank you, i'll look into this also. trials aren't my thing since i am too ornery and also have been too sick to get in (according to my oncologist) for a while now (but currently am a tad better thanks to verzenio), but some drugs that can be gotten through compassionate-use. maybe this is one of those?
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Ornery- what a great word!!!
Luce, are you taking Abemaciclib alone and already having a response? Can you list what else you have tried? If you can get anything else you want over there, try adding Atezo with Faslodex?
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yes, monotherapy. yes, response or stable disease, judging by tumor markers trending down and that i can breathe a bit better. i was given suicide meds in january (and offered them the previous october but did not go through with the lengthy application, because ornary), so i had been very close to death. now i am a little better. not well by any means; i can only walk a few steps, and only talk sitting down.
no other conventional drug treatments, although some low-dose chemo and immunotherapy in mexico. i should be taken but never wanted anti-estrogen drugs. (the low-dose chemos accumulative toxicity triggered menopause in me. i am very upset about that.) i am firm on that. also very disinclined towards chemo in general, mostly because i had wanted to avoid menopause. now that that happened, i MAY consider chemo.
anyway, totally exhausted. good night!
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Luce - I got kinda excited to hear that chemo is on the table for you because I am having a surprisingly good experience. My liver went from 60% liver involvement, 2-3X normal size to maybe 25% larger then normal after only one complete and the first dose of the second cycle. I am doing weekly low dose abraxane and i am fasting per Valter Longo, more or less. He never envisions fasting on a weekly chemo cycle so I have adjusted both the chemo cycle and the fasting to make it work. I know you are familiar with his work. I am thinking a couple more cycles of abraxane to drive down the tumor load/suppress the tumor micro environment and then switch to abemaciclib as maintenance.
I did not do chemo until liver failure was imminent and my back was up against the wall so I can relate, as always, to your view of things. I am pretty ornery myself.
I got this outcome with chemo + fasting without even doing the full dose of Abraxane in the first cycle. I took of 2 weeks off between cycle one and two rather than one before starting cycle three, so the schedule was light. Given my response to a little more than one cycle, my by the book standard of care MO suggested ON HIS OWN that we can/should lower the frequency to below the guidelines. We're thinking we can tip the balance towards allowing the liver to heal, reducing side effects. Moving to 2 weeks on//1-3 weeks off. Integrating fasting with a lighter schedule will be enormously easier and likely more effective as the recovery periods are critical.
PM me and I will provide details if this path speaks to you. Abraxane has some advantages over other taxanes because it is liposomally encapsulated. Taxanes are not necessarily the way to go as the fasting regime works with any cytotoxic chemo drug. Doxil is the chemo with the most synergy with an immunotherapy approach or at least the best researched in this regard. My point is that fasting might be the key, the choice of chemo is whatever your research and gut tells you to do.
>Z<
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zarovka: thanks for sharing your experience! i am glad this combo is working so well for you. i would only do chemo with a fasting protocol also (i fasted/CR'd when doing rads 4 years ago, when there were no official protocols, just some studies with chemo. the integrative/naturopathic/ FABNO doctors i went to at the time for advice hadn't even heard of it yet), but i am still reluctant to do chemo, partly because that would be a whole new kettle of (smelly) fish for me to first research. i know nothing about chemo since i never concerned myself with it. and i am really, really pissed low-dose chemo put me into menopause, so i already have a beef with chemo. but, yes, it makes sense (in your case) to reduce cancer volume before verzenio or immunotherapy; both definitely work better with less tumor volume, especially immunotherapy, i was told only this week by an onc. onne of them proposed xeloda (with keytruda) to me yesterday. really not sure if and when i'll get to looking into that. i am wondering whether you could start with another cdk4/6 inhibitor first, in order to continue fasting during the off week (and while anti-estrogens are still working for you), and to safe the probably more-effective (possibly because there is no off-week, and therefore no rebound effect, which might not make a difference for slow-growing tumors but almost certainly would for aggressive ones), possibly as monotherapy or to combine with an upcoming treatment (maybe we'll see that, say, the so-far-sluggish-looking keytruda kicks in later, in that combo).
anyway, i may PM you for further info at some point. i may also PM you with further info at some point: non-abemaciclib-related approaches i have recently heard about and am researching. all very long-shot, of course.
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Luce - I am ALWAYS interested in your research. I am not sure what a long shot means when we are guaranteed to progress on every standard of care treatment.
In any case, I am going for remission and all the possible strategies are a long shot.
>Z<
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Z - I’m very excited about your continued amazing response to abraxane/ fasting!
I wanted to ask you about a comment you had earlier for chatsworthgirl regarding local liver treatment.. why would you think that with a single liver lesion, Tace or Y90 is better than ablation in light of bone mets? Would you explain more please?
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Great posts ladies! Thank you!
Luce - question? Are your ovaries suppressed? You mention that you don’t want to be in menopause and I was curious if there is a way around it myself. Although, I haven’t felt toobad being post menopausal. Just curious if I should explore something else. What is you adversion to menopause?
For everyone - I’m also curious about CBD oil. Any success stories? And, in search of a new probiotic. Any recs?
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mostcapable: no, cyclophpsphamide depleted my ovarian reserve, so this is permanent. i did not know anything about cyclophosphamide and was too stupid to google it, or else i would have learned it is the most toxic-to-ovaries chemotherapy drug there is. i also learned belatedly that ovarian-reserve depletion through CP could have been prevented by another medication or, according to at least one study, spirulina supplements. i am so full of anger and sadness and regret, i don't want to even fight this cancer anymore. i mean, i am already going to die decades before my life expectancy, and now i am going to get old first, too? so i am glad you are taking the idea of early menopause in stride. i am not. it'll even reduce my chance of survival, apart from making me look and feel old about 10 years prematurely (my mom went into menopause in her late 50s): i can't sleep anymore. and, no, i am not just going to pop yet another pill for that.
also, had i not gone into menopause, i could have gotten on a medication to suppress androgens, which in combination with immunotherapy might stimulate the thymus. but androgens are of course where my diminished estrogens come from now, and are pretty much all that stands between me and snapping in half from brittle bones and my skin going completely to shit, so no, thanks.
rant over. and, please, no follow-up questions or advice; this is too painful for me to keep discussing here. thank you.
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I’m sorry. I didn’t mean to upset you. I don’t like the thought of aging before my time either. Or, the thought of not having another child. I’m truly sorry for upsetting you. I was hoping for an alternative- you and Z know so much.
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