Abemaciclib Verzenio for Stage IV
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Luce - I haven't been checking in here much lately but I am thinking about you. How are you doing?
>Z<
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z: i'm okay, thanks for asking. i am feeling the same as a few months ago, which is not great but better than feeeling worse, so perhaps verzenio is keeping me stable for a bit. none of my symptoms have improved, though. i could have had a keytruda IV two weeks ago but backed out. too afraid of side effects, especially pneumonitis. of course, i am conflicted about that decision, as keytruda could actually make quite a difference if i responded, and porbably only during my verzenio window of about seven months as monotherapy. my oncologist did say to take the keytruda asap, if i am going to take it, because of the verzenio synergy and also because my prognosis is so short, and keytruda could take months to kick in. but while the risks are relatively-well known, any efficacy in our population is still a question mark. sure, i am going to die anyway, and probably soon (and getting worse soon), so it would be rational to just go ahead, but i also don't want to be feeling worse right now, and keytruda could make me feel much worse right now, or soon. so i am feeling a bit stuck.
i am also researching unappealing but in my by-now educated opinion probably effective alternative longevity approaches, like medical keto. scientifically, it makes sense to me. i know one can't starve cancer but one can certainly deprive it of its preferred fuels, and slow it down that way. also, "clean keto" may correct metabolic dysfunction that might be contributing or causative. but, boy, do i hate the ketogenic diet plan! i was very close to it for years, on a no-sugar, no-fruit. no-grain paleo diet, but that supplied about 50g of carbs (in vegetables), not 15. there's a world of a difference in that, with regards to variety, phytonurtrients, vitamins and minerals....but it did not have me running on ketones because of that.
also considering an oral high-vit-c protocol but it is expensive and bothersome and also restrictive.
how are you, and your japanese treatment?
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Hi Luce,
Thank you for your response. I started on 150 mg twice a day, since the clinical trial for mono therapy showed that 90% had diarrhea at 200 mg. I have asked my doctor to prescribe something other than zofran for nausea. Hopefully that would help. I tried ginger but it gives me stomach burn and due to my mouth sores, I can't tolerate it. How do you use it?
After being on Ibrance+Faslodex for 18 months, I couldn't take Faslodex any more. My joint pain was horrible! Plus newer spine mets started popping up. So I switched to Verzenio.
Sorry to hear about your health - hopefully, Verzenio is the miracle drug we all need! What other treatments have you tried? How does your MO monitor your response to the treatments?
I was thinking about getting tested for DNA mutations - inherited and acquired; I have read about the treatment geared towards specific mutations. Has anyone tried this? I am planning to talk to my MO about this during my next visit. She is on top of all recent research in BC.
If anyone has any input regarding this, please feel free to chime in!
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S3K5: I don't currently take ginger but in the past, I used capsules, by Gaia, for example. I am not having my cancer monitored; too stressful and too much radiation. Surely, if something's working, I'll be the first to know. Not having any other treatments; I'm a wuss, and I consider anti-estrogen and chemo barbaric. i had the foundation 1 test a year or so ago. i don't think anything usable transpired from it at the time.
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Here is a suggestion. My wife is taking it to try and increase her appetite. It is called Marinol.....Dronabinol is another name.
Dronabinol is used to treat nausea and vomiting caused by cancer chemotherapy. It is usually used when other drugs to control nausea and vomiting have not been successful. Dronabinol is also used to treat loss of appetite and weight loss in patients with HIV infection. Dronabinol (also called THC) is a man-made form of the active natural substance in marijuana.
I have no idea if it works or not. Zofran worked on my wifes nausea.
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Z- It's Monday!! How did you next infusion go?!
Luce- Thanks for the update about the JPCE trial, I have also been searching for information. Hoping they see some synergy- I'm not too concerned about checkpoint immunotherapy side effects, you want to be sure that if you get any kind of infection/fever you hightail it to the ER, in case of sepsis, but the SEs are otherwise supposedly quite modest= remember, Jimmy Carter took Keytruda at age 93! If there is any benefit, I will look into trying it sooner than later, because, as you say, it takes time for immuno to work, and then if you do respond, it keeps working for hopefully a long time..
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Cure_ious: I am not in the trial. I only read about it and consequently asked my oncologist for Keytruda based on it. BUT I expected the trial results to be available by now. I had expected them to be published in the first quarter of 2018. They haven't been, though. My oncologist expects them to be released at whatever cancer congress is at the end of May or June. (I forgot.) So I am sitting on my hands now, for fear of side effects. I think the wording in the interview about the trial I had read was a bit misleading, something along the lines of,"no additional toxicities" with the combination. I misread it, since I was only skimming research at the time, so I thought that side effects were no worse than with Verzenio alone. But it is probably the other way round (my oncologist agrees): side effects no worse for Keytruda when Verzenio added. And with Keytruda, pneumonitis is a common side effect, I am guessing about ten to twenty times as likely as getting any benefit from Keytruda with ER/PR+ bc. (I could be off here; I haven't done deep research because I had counted on 12-month follow-up results being available in March.) It takes heavy duty steroids (or long-term low-dose steroids, preventatively), and I am opposed to taking steroids. And since the cancer affects my lungs greatly--I have the entire pleura covered, as well as a giant tumor growing on the pleura and pushing into the lung, as well as a pleural effusion on one side, a pleurodesis that is causing scar tissue and hardening on the other side, and extensive metastatic tumors in the parenchyma inside my lungs--any prospect of pneumonitis is terrifying. It would probably finish me off, or at least sharply reduce my quality of life. Sure, my lungs will definitely deteriorate without any Keytruda side-effects also, but right now, they feel stable from Verzenio. (Stable in my case is I can only walk a few steps at a time, and need 2l of oxygen to sleep.) And once one has had pneumonitis once, one is prone to getting it over and over again. Pretty sucky, really. Sure, the RATIONAL decision would still be to get Keytruda infusions every three weeks (that seems to be the protocol, 200mg every three weeks, which seems overkill when you are small like me, the one-size-fits-all dosing. In children, they adjust it to weight) ASAP, since I am already at the end of my prognosis. But I am only 46, so my brain cannot quite fathom my own imminent demise, and would rather just putter along, maintained for now by Verzenio. Also, I am much more interested in holding out for innovative administration routes of immunotherapy drugs--intratumoral, or into the main veins supplying tumors, or in combination with cryoablation or OX-40--rather than just systemic IV. That way, side effects are probably minimized. But, yeah, I probably have no time to waste. I am glad you think the possible side effects are not much to worry about and I wish I felt the same. My doctor, knowing me, said this,'You need to be 100% sure you want Keytruda IV's, because if you are on the fence about it and get side effects, those are very terrible and you will regret taking Keytruda.' And the questions I posed him, he called very good but that there just aren't any answers to them yet. So I may wait until at least the JCPE trial data is out before I make a decision.
I wrote at length because I am super-interested in your opinion on this, since I know it is an educated opinion.
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mildly interesting: https://www.onclive.com/web-exclusives/cdk46-inhib...
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Luce - I did a deep deep dive into diet and cancer this spring. I came out of that process very concerned about high protein diets and cancer. Actually high protein diets generally. One large 5 year trial of a ketogenic diet was stopped for ethical reasons after two years due to high mortality in the ketogenic group. In the case of cancer, protein increases levels of Insulin Like Growth Factor 1 which drives the growth of many cancers. Please give the work of Valter Longo of USC a read before launching on a ketogenic diet. Starving cancer, yes. Starving cancer with a high protein diet, no.
Longo just published a book called the Longevity Diet. Unfortunately the name suggests a fad diet. It's really about treating disease with diet. Alternately, his published papers are readable and he gives a lot of talks that are available on YouTube. He's a good communicator and tends to be the public face for this strategy but what he talks about integrates decades of research from 10-15 research institutions around the world.
The video below not bad. This talk focuses on fasting which is a key element of the strategy but not the whole thing. The book is helpful in painting the full picture. With your digestive issues, I have a hunch you may get some traction with some kind of implementation of this strategy. I'll be curious if it feels right for you as you have wonderful intuition. I am going to suggest that your intuition is telling you a ketogenic diet is not the way to go.
Finally, it may seem crazy for a cancer patient to fast even for a short time, but for me the net effect has been an increase in nutrition and caloric intake because it resolved digestive issues. Also, the fasting is just a piece of it. What you eat in between fasts is key.
Also, I appreciate very much you detailed presentation of your thought process of Keytruda. I need to re-read with care. The checkpoint inhibitors are certainly not without risks. I am an immunotherapy enthusiast, but avoiding Keytruda myself for the time being. I want to see some results. I also don't think they will work on breast cancer as monotherapies. At the same time, we don't know what combinations will work. Until then, I don't feel the benefits outweigh the risks for me.
Thanks for the various updates and generally sharing how you approach things. I learn so much and I care as well. I am glad you are at least mostly stable.
>Z<
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Z - Thank you for your detailed posts and very informative insights.. I always check in here to read your thoughts when I’m in despair..you are invaluable to this community ❤️
I have been thinking of the intermittent fasting for a couple of months now but I just ordered the book and can’t wait to start reading .. I believe nutrition is a big piece in this puzzle
I’m stuck at the crossroads again.. way too soon as usual and I’m interested to hear your thoughts on Verzenio and faslodex vs Halaven.. I from my limited understanding Verzenio can be used with immunotherapy? But not dure how?
Hope things are improving for you .. you are on my mind and in my prayers a lot!!
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Nouzay - I am glad you bought the book. Read carefully before you fast. Dive into the papers that support the particular issues you are trying to address. Intermittent fasting doesn't alter the metabolism in the way a straight up fast does. It's a different thing. Not sure what it does as it hasn't been a subject of extensive research like a water fast or the fasting mimicking diet proposed in the book.
>Z<
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Z. thanks for your ideas and insights and recommendations. i had looked into longo last year but there was no book out yet, just the website. i put a hold on his book at my library.
the ketogenic diet for cancer is of course low to medium protein, for the reasons you state (IGF-1, for example). i believe it would be effective in keeping many of us alive long-term but i am unwilling to go on it since i enjoy carbohydrates (from vegetables and limited fruit) too much. (no, i do not follow my intuition or research conclusions on these things. else, i'd be taking hormone blockers, too, since they would certainly help.) there are several books on ketogenic diets for cancer. one is by a naturopathic physician who has been keeping herself alive for decades. it is called the metabolic approach to cancer, by nasha winters. (there's a fb group of women following her program where she chimes in. i left it because i was not willing to actually eat that way.) then there's thomas seyfried's book (i have not read it) and research (which i have read).
yes, i am very aware of fasting. i fasted during radiation and several times after. water fasted for 3 days last year, for 26 hours a few weeks ago. was on very low calorie fasts a bunch simply because i was too sick to eat or keep food down for periods of time also. i agree that TRS (time restricted eating; some people incorrectly call it intermittent fasting) probably does not have the same effect/s; i have been on TRS for years.
i agree keytruda won't work as monotherapy. that's why i am getting nervous: my verzenio-efficacy window is probably closing soon, since as monotherapy, it appears to be much shorter (i seem to remember reading 7 months). and from my tumor markers (which i reviewed for the first time this week. they are trending down ever so slightly, in tiny increments, and less so last month already. apropos tumor markers: they crept up further up in this thread, but which one were people referring to?--i must have missed a post; i could not determine which tumor marker was being compared), it seems it kicked in for me as soon as i started taking it for month ago, although i am feeling zero percent better, and none of my symptoms have abated.
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Luce - I find myself in the odd position of suggesting chemo after my recent experience. I am having an easy time on Abraxane, a encapsulated taxane, when I combine it with fasting. Also just found out I got spectacular results. Just putting it out there.
>Z<
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Luce- You are really well-informed, and I am so enjoying reading the discussion about all these different aspects of diet etc
The main thing is to be sure everyone know that the reason Keytruda is being tested in a trial in combination with Abemaciclib is because of very promising preclinical results published in Nature showing that CDK4.6 inhibitors upregulate PDL1 and cause T cells to infiltrate tumors, making the normally cold breast cancers "hot" in terms of the criteria as we understand it, and able to respond to immunotherapy. So of course immunotherapy should not work and does not work on its own, but the combo is a very different situation. If you are concerned your response to Abemaciclib might peter out sometime soon, then why not throw Keytruda on top and see if you encounter any bad side effects, before you have to move on to chemo or whatever is next anyway? Something to consider. But also, would insurance even cover doing that?
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thanks for your reply Z !! I’m still jumping with joy for your scans ❤️
When you say “straight up fasting” vs intermittent fasting, what do you mean??
Someone here said you have detailed your diet plan before.. I may have missed it 😩
If you have a copy of what you did somewhere please share!!
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Cure_ious: yes, thanks, i am well aware of that pre-clinical evidence, which is the reason i am considering keytruda. and, yes, my window may be closing. so why not go through with it? 'cos i don't want to die from pneumonitis next week, or have to take steroids (I simply would not), or have type-1 diabetes or rely on thyroid hormones for the rest of my life. i mean, what is the best possible outcome of keytruda+ abemaciclib? we know little about that. i doubt it could cure breast cancer. and the tricky thing is, side effects may not show up until months later, even after cessation. My oncologist thinks the possible side effects of keytruda very serious, probably permanent, and definitely requiring treatment with steroids, probably long-term.
(i have no plans to go on to chemo or anything else that i currently know of, although i will research the chemo and fasting combo that Z is responding well to. (thanks for sharing, Z!) i did a similar thing (calorie restriction, fasting), but with cyclophosphamide. it did not help, and now i am living with the permanent side effects of cyclo.
i guess i need to point out that for me, there is a balance between quantity and quality of life, and i am reluctant to just try anything that may promise some quantity at the likely reduction of quality. i just don't want to live for a whole long while (if that were even an option) while feeling like crap or dealing with a new medical issue.
Z. thanks for the recommendations! i am glad there now is a book by longo; i'll probably implement his protocol the DIY-way (meaning not buying his food products) if i do decide to try keytruda (or--less likely, but more likely now that cyclo has already done a number on me; i had been trying to forgo chemo completely--go for last-ditch chemo).
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Nouzay - I don't actually know what intermittent fasting means. Sometimes it refers to not eating for 12 hours during the day, sometimes one day on, one day off. Its not a well defined term but it is not a sustained fast.
The fasts that have been shown to effect chemo side effects and efficacy are 3-5 day water only fasts. In some studies people had up to 200 calories of vegetable broth, basically very little. It requires a sustained state of starvation over 3+ days to drive your body into a different mode of functioning ... getting normal cells to go dormant so they are less effected by the chemo. Longo has also developed a fasting mimicking diet which you can DIY or buy as a product. He describes the DIY approach in the book. I will try the product as one of my fasts in my next Abraxane cycle.
It's something you need to study before you attempt. Alternately there are now trials opening at several major institutions you can get into. That is the safest way to go. There are doctors getting trained in this ... I will post if I can find the list.
We each have our path. Make sure you feel comfortable with your choice because that gut feeling is will get you where you want to go...
>Z<
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so i am listening to an interview with dr. longo, and a question arose for me that someone here may be able to answer: if the refeeding and rebuilding phase is the most important part of prolonged fasting, is that going to work as well on, say (since we are here), verzenio as it would off verzenio, since verzenio interrupts a part of the cell cycle, which is why white blood counts tend to go down while on it. (mine have.) he was just saying that in his mice, 40% of white blood cells get destroyed during the fast, and the idea is that those, along with many other cells, get rebuilt better than they were upon refeeding, thereby strengthening the immune response, etc. but what happens when you are on meds that may interfere with that very process?
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Luce - It's a good point. I wasn't suggesting combining fasting with Abemaciclib because there are no studies about how to go about it. As I recall, Abemaciclib has no off week designed to allow WBC to regenerate. It may not be the right drug to do with fasting.
One could combine fasting and Abema but you have to really have to think about what you are doing. You might introduce a break such that low levels of Abemaciclib correspond with the re-feeding period? I do think you (Luce) are capable of studying this and figuring this out. However, you must deploy all your considerable mentally capacity and intuition before you proceed.
With chemo, you MUST continue the fast after the IV infusion until most of the chemo is out of the system otherwise the damage can be significant. Longo discusses that at one point in the cancer section of the book. Researchers focus on WBC because sustaining the immune system is such a big deal with chemo, but the cycle of dormancy/autophagy (during fasting) and regeneration/growth (during re-feeding) takes place in all cells including liver, skin, everything. Immediately after the IV, you have this chemo in your system at high levels. If you stop fasting and allow the regenerative process to begin while you are on a very high dose of chemo, the chemo attacks all the normal cells that are rapidly growing.
Based on some bloodwork, I think I wasn't fasting long enough after the IV and the chemo may have been attacking normal cells. According to pharmokinectic studies, most of the Abraxane clears the system in 24 hours. However, my onc and I were talking about something else, and he pointed out that with <40% liver function the Abraxane is going to be metabolized more slowly and the effective dose will be higher and the time in your system would be longer. I only fasted 24 hours after the IV on the first two cycles based on what I had read. After those cycles, the markers for liver damage (ALT/ASP) rose. Then I rethought my strategy, assuming that the Abraxane is in my system longer, and extended my fast to 48 hours after the IV and ALT/ASP are starting to go down.
Luce, these are just my thoughts. I am your total support cheering section over here for anything you choose to do. I know you are thoughtful and careful as well as bright and intuitive. Interested in your process and thinking.
>Z<
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great point Luce, I was thinking the same and also was wondering about how to go about given that Verzenio is a daily pill with no down time but Abraxane has a half life of about 24 hours .. but Zarkova put it so well as usual.
Maybe intermittent fasting could make more sense in this case since you have to take the pills twice daily.. this definitely needs to be looked into
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zarovka: glad the fasting/chemo combo is working well for you. i am definitely interested in that approach. and very much in fasting, but probably not on verzenio. i don't think the rebuidling would go well. and while i may consider taking a break to integrate fasting, i'd be worried about a rebound effect from pausing verzenio. if i weren't so advanced, though, i would DEFINITELY pause verzenio and only fast (possibly using dr. longo's protocol) while trying to figure out if and when to take the verzenio/keytruda combo, and while waiting for more data to emerge.
your opinion of my intuition is too high; i don't have intuition on these things. and i get overwhelmed by research, and have frequent blind spots and miss crucial info. going into menopause from cyclophosphamide could have likely been avoided by something as simple as taking spirulina, for example, but i--distracted by other aspects of the cancer-treatment rabbit hole-- did not do my research in time. i also neglegted asking for tumor marker tests at crucial junctures, and now am dealing with a lack of marker-history to compare what's going on to. i am tired of research (i don't have a life outside of cancer and cancer research anymore) and tired of regrets (and there are many, starting with that i should have gotten the primary tumor cryoablated, but i did not know about cryoablation then) and tired of cancer. i wish i had the money to seek out and consult with and be treated by the few doctors i think could really make a difference for me at this point, or at least find someone local who can put all the parts together for me. but i have limited funds, and i don't think such a person exists in portland anyway. (i won't name names, but more than one naturopathic oncologist in portland would tell me that they always learned such a lot from me when i came in. one of them never even billed me for our consultations for that reason. i need someone who knows more--much more--than i do!)
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Luce - We have no time for regrets and you are doing an awesome job. I don't think you should lose confidence in yourself because of your mistakes. I see that often in cancer patients. How many times, per day, does an oncologist in a fabulous white coat and a wall full of degrees prescribe a drug or treatment strategy that does not work? Probably half the time. And this is all these guys do. This is a hard business. I think you are doing pretty well.
>Z<
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Tomorrow, I have my 60 day scans since starting the clinical trial of abemacliclib and immunotherapy. I've been having a serious case of scanxiety over the last few days. I am hoping and praying for good results so I can continue in the study. I've been feeling pretty good and still able to work, just have diarrhea about every 3 days. I will let everyone know how it goes.
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WorkingMom - Scanning early and often is interesting and is really a benefit of trials but on certain drug combos it can be confusing. 60 days might be early to see results on your treatment combo, IMO. Also, "progression" at this time could be an inflammatory response (immune system attacking tumors). Ask a lot of questions about any apparent progression, if they find any ... That said, praying for a clear and definitive response to set your mind at ease. In this situation, stable would be a pretty straight forward positive result as well.
Keep us posted!!!!!
>Z<
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Hello all,
I will be having a pet/ct scan tomorrow. I have been on Faslodex only with Xgeva for the past six months and my tumor markers have continued to rise. The last one was CA 27 29 at 873.
So the onc has determined that we should add Verzenio to the Faslodex and Xgeva. I will be reporting on my scan (the last was in Feb 2017 when I got some bad tms on blood work). The onc wants a new starting point with the new scan. He said he didn't think it would show anything different. Not sure why he said that since the tms rose continuously.
I will also report on my experience with Verzenio.
I have bouts of pain in my hips and joints that comes and goes. So weird. I can only guess that Faslodex causes the joint pain. I also find that whenever I do some physical activity like heavy gardening I pay a price the next few days in pain in joints and muscles.
Anyhoo, I will join this thread on Verzenio and post my experience.
Chatsworthgirl
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Hey Chatsworthgirl. It's always tough to change treatments but we're glad you are here. I look forward to reading your posts.
>Z<
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Hello, I want to let you know your story was an inspiration and gave me hope. I pray you live a long life this is a very scary
journey for me I am 47 and I have 2 small children that I want to be around for. Thank you for sharing your story.
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I got my 60 day scan results today! Great news! Tumors are shrinking and tumor markers are now in normal range! Abemacliclib and immunotherapy trial is working! Beyond thrilled!
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That is really exciting news, workingmom! How long will the trial last? Where are you being treated?
do you still only have bone mets? Thanks so much for being a part of this trial, as it helps us all.
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Go Working Mom! Thanks for letting us know!!!!
Beyond thrilled indeed.
Are they doing any diagnostics that would indicate an immune response is a piece of this?
>Z<
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