Abemaciclib Verzenio for Stage IV
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mostcapable: no need to apologize. you didn't upset me; i did, by not doing due diligence for once.
yes, this sucks, doesn't it, all the losses (mostly of future/potential, but so many in the here and now) we have to deal with in such a short period of time, not stretched out over decades as is normal. i am so sorry you, too, are having to deal with this. i'm glad you seem to be doing it more cheerfully and gracefully than i am.
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Thank you. It does suck! So many women on these boards. I worry about my daughter growing up with breast cancer on both sides of the family. It’s all not right. Do you know how many of us you help daily with your posts? I don’t know you but I think you are incredibly strong and smart!
I write things down that bother me - and then I burn them! Feels good watching the little “happiness thieves” go up in flames! Maybe that’s how I stay cheerful. One way anyway...lol!0 -
mostcapable: thanks for your kind words. i wish i could actually/really help someone/us, not just toss around ideas and side-effect experiences.
good idea, having a letting-go ritual! i think the first thing i'd burn down would be my ex-bf's fancy house, haha! you know, the one who knew i had stage-4 cancer when he asked me out but then replaced me with someone who doesn't when my breathing problems became bad. my defense will be that you advised me to watch "happiness thieves" go up in flames!
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Nouzay - I attempted to say the opposite, sorry if I wasn't clear. Ablation involves inserting a device into a tumor and heating it up till it explodes. Tumors are sensitive to heat because they have a disregulated blood supply and they cannot dissipate heat. I can't imagine doing that for more than one or two tumors, although I don't actually know the upper limit. TACE and Y90 both insert cytotoxic chemicals into the hepatic artery and tumors really latch on to the artery and its branches so the hepatic artery is very effective at delivering these agents to multiple targets. The limiting factor is liver impairment. You have to have sufficient healthy liver tissue because the chemicals do damage healthy liver and potentially liver failure. How much healthy tissue do you need? At 40% liver involvement, my IR wanted to proceed. The answers you get will vary.
All local liver treatments make the most sense when the liver is the primary site of metastasis. How much bone metastasis can you have and still call the liver the primary site of metastasis? That's a question for the IR. You will get different answers from different IRs.
Luce - I am just going to say you are awesome. I am determined that you should stick around. I am sure I will look back at some point and credit the due diligence that you share with us for keeping me alive.
>Z<
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Well, here is an interim report. I am getting bloodwork on the 6th and have been on Verzenio for two weeks now. However, diarrhea full blown now. Taking immodium to get it under control. That "ugh" feeling I was describing - I looked up the side effects and one site mentioned "feeling not well" on this drug. That is an understatement.
The unwell feeling lasts several hours after I take the morning pill. So I have devised a plan!!
I am taking the morning pill at 10 a.m. which gives me from about 7 am when I get up until then to get stuff done. If I get hit with the "ugh" I will go to bed and rest for a while. Seems to get better when I lie down and just zone. Did that yesterday. Then I will take the nighttime one at 10 p.m. I seem to sleep mostly through the night. A few nights of waking up at 2 am and having difficulty getting back to sleep but not too often.
This shit had better work because my quality of life is being severely compromised.
Chats
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chatsworth - Thank you for the report, which is invaluable to all of us considering this drug. The illness is clearly related to Abemaciclib since it comes immediately after you take the drug. I am hoping that you have a strong response so you can consider lowering the dose. However, personally I would be inclined to soldier through this until you have diagnostics that show if it works or not.
Great strategy for dealing with the effects. Go girl.
>Z<
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Hey Chats -
I'm with you. I have been on this med for 4 months and it has been a challenge. There are days when I feel somewhat normal, but few and far between. I also have the most problem in the morning. I have to take an anti nausea med almost every day a few hours after having the Verzenio. If I don't get to it in time, then I lose my breakfast. I pretty much eat very bland food and I suffer if I don't. The diarrhea is under control somewhat, using a combo of 3 different meds, but sometimes goes the other way and I end up constipated. It is a balancing act every day and most days I feel crappy at least part of the day.
My doctor is considering changing me to Xeloda. I am having a scan Wednesday and she will decide after we see the results. My first scan showed improvement on tumor size, and my TMs have been falling, from 479 to 206, but she is unhappy with my quality of life on this med, so we will see.
Having said all that, it's a good idea to give it some time. Many people apparently acclimate and the SEs improve significantly. Good luck!
Donna
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Hi,
Took my poison pill this morning and stopped at the market on my way to work to pick up a few things in the event I actually could eat something. LOL
I had been reading about probiotics being beneficial for the stomach issues with these drugs, so I got some organic yogurt (vanilla flavor with some sugar cause I just can eat the plain stuff). I had a few bites of a muffin which was all I could stand to eat as a solid food and then had the yogurt. Well, lo and behold, my nausea and icky feeling went away. Could this be the ticket for me? I feel pretty good right about now. Maybe it's my gut bacteria being throttled that makes me feel sick to my stomach. I love being my own science experiment....
Anyhoo, just thought I would post this bit of info. Oh and I forgot to add the other SE I have been experiencing. Loss of taste. I remember when I went through chemo that loss of taste was an issue. This drug causes the same thing. About the only thing so far that tastes correct is salt and sugar and pasta sauce. My new diet. I can't drink my wine either.
I make my own wine - we have 50 vines of Cynthiana grapes (a very old varietal). Organically grown and I use very little sulfites as I found a long time ago that they give me a headache. I really used to like a glass or two in the evening of my own stuff but I found that on Verzenio it tastes so "off" that I can't drink it. That is a real bummer because the wine made me feel pretty mellow. I am not much of a druggie so there isn't anything else that I do. My last joint was in 1972. LOL
Chats
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I've never posted before but am looking for some understanding as I head into my 3rd mo on Verzenio. I work w middle schoolers and have been taking my doses at 2 am and 3 pm. The SE are gone by 9 so I'm able to work w/o rushing away as I talk w a 13 y o. Do these symptoms calm down? Also, has anyone notice an odor? it seems to act like garlic in that it pours out of me all day every day. Thanks so much!
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17,
I have not been on it long but as soon as I started putting probiotics into my system the worst of the side effects went away. I remember now that Z posted information at the beginning of this thread and it included that it was important to do this.
Whereas prior to my adding probiotics my SE's lasted for several hours, now they are minimal at the most. Apparently, at least in my case, my gut bacteria was being damaged and my inability to process food properly was causing me all sorts of problems. Having the stomach pains and intestinal problems from lack of proper gut bacteria made me feel awful. I no longer have the "ugh" feelings or feeling unwell.
I haven't noticed any particular smell.
I still have to watch what I eat and drink - nothing too spicy and no alcohol. Otherwise I am feeling much better and think I can now handle this drug. I will find out on the 8th or so if Verzenio is working for me. Fingers crossed.
Chats
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go chatsworth girl. excellent job sleuthing out the issue. consider pre-biotics to feed the bugs ...
>Z<
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Z
Love me some bugs..
Chats
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Greetings Chatsworthgirl, I'm so glad to hear that your side effects subsided when you started taking probiotics - yay! And a warm hello to others posting here. I'm slated to start Verzenio in the next few days. I am so sorry to hear about all of the nasty side effects and diminished quality of life many of you have experienced. I'm very nervous about starting the drug. The post by zarovka had a section on diarreha management, and the electrolyte recommendations caught my attention. Has anyone tried using them (I have not read every post, so may have missed mention of this)? I went to Amazon and ordered several different products to have on hand and plan to take them starting day one. This drug is very hard on the gut flora so it seems like using a potent probiotic, perhaps also a prebiotic (I need to learn more about those) and drinking fluids fortified with electrolytes could really help. After I get going with my treatment I will share anything I try that could help any of the rest of you! Thanks for all of the tips shared!
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belll: don't be nervous; the side effects are very minor (for me) compared to other cancer drugs. i had grade-4 diarrhea, and that was difficult, but a dose reduction (after 4 weeks of sticking it out at the original dose) helped greatly. i still get diarrhea 2-3 days a week but find that acceptable, given that verzenio has helped with my breathing. (i would find the diarrhea harder to manage if i weren't home--i am pretty much housebound-- most of the time, though. i would opt for diapers, just in case. and you can and maybe should use the diarrhea meds recommended. they made me super-tired but most women on here seem to be doing fine with those. ) i never got any more tired from it than i already am. (i am pretty sure my cancer is way more advanced than most women's here, though.)
the changes in appetite and taste also became less on the reduced dose. they were never such a big deal to me, though. chemo was much worse for that.
while i think pre- and probiotics are great and have been taking very high doses for years, they did not seem to help with the verzenio diarrhea, in my case. but that is just my experience, and i would recommend them in any case, since a healthy gut flora is important for myriad other functions.
i never used regular electrolytes because i avoid sugar, but i am sure they are a good thing to have on hand rather than get dehydrated. i only used OmniBlue Ocean Minerals and somehow still survived the severe diarrhea i had. i am not saying i recommend that course, only that i am pretty sugar-phobic.
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Electrolytes with sugar should be avoided by cancer patients, as should all added sugar. However, the sugar in electrolyte drinks has not benefits. It's easy to buy electrolytes without sugar. Here is one I use that is sold on Amazon.
>Z<
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Today is my last day on Verzenio. PET showed progression on my 3 liver tumors. They are all about 1 cent. larger than the last scan on 4/4. Also the spine mets lit up brighter than before. The doc had told me that she would probably be taking me off anyway because of the SEs.I am one of the unfortunate ones whose SEs never really got under control despite electrolytes, probiotics, all the diarrhea meds etc. it's been a miserable 5 months but I was willing to go on if the drug worked for me. Now it is on to Xeloda. Wish me luck! And I pray that you all will have a much more successful experience with verzenio!
Donna
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Thank you Donnabelle for being so generous in sharing your experience. Your posts have helped us all. Best of luck on Xeloda. Great drug. I expect you are headed for a long run ...
>Z<
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zarovka: thanks for posting the link to the electrolyte you use! of course, i completely agree with you on sugar. (the omniblue ocean minerals are similar to the electolyte product you posted, but with perhaps a less-perfect balance. i already had them at home and did fine with them, though.)
donna: best of luck to you!
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Hi Z & Luce. I am following this thread with interest in case Verzenio becomes a next treatment for me. I am on cycle 22 of L/I with extensive bone mets and happy to say currently stable. However I am a sugarholic. I have heard that sugar feeds cancer but have not read anything that backs this up scientifically. I even messaged Johnshopkins and was told that it was a myth. Anyway i have followed you closely Z and have huge respect for what you say and you Luce also seem to be very clued up. Therefore please would you let me know where i can read up on this because chocolate and cookies are not my only source of sugar. I am a vegetarian so consume lots of carbs, fruit etc therefore cutting out sugar would be a huge thing for me. Wishing everyone on Verzenio great results.
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chico. yes, all carbs get turned into simple sugars. but starches and actual sugar elicit a faster and more extreme blood sugar spike (that may head straight for your tumors. see: PET scan) and insulin response. it is really insulin that is the problem. if you can keep insulin low and steady, rather than have the huge spikes that sugary meals or snacks or sweets without sufficient fiber generally cause, then that might keep your tumors growing more slowly.
i personally think a ketogenic diet would slow down tumor growth because it controls insulin, and may repair metabolic dysfunction. not because it staves cancer. nothing does. but it less-readily feeds cancer. most cancers don't like ketones. that said, i love vegetables and fruits and those have way too many carbs to stay in ketosis, so i am not following a ketogenic diet myself.
( i could go on about this forever and may add to it later, including relevant links.)
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chico: sugar seems to repress the immune system also, and for many hours after it is ingested. so that may be a problem.
i was a sugar-addict until my early 20s. i trained myself to not crave sugar. it is possible. i would advice going cold turkey (i also used to smoke until my early/mid 20s), and training your palate to recognize and appreciate and love the natural sweetness of vegetables and fruits. those supply many phytonutrients and micronutrients (in addition to their natural sugars), many of which are cancer-fighting. candy and white bread, etc., are mostly empty calories.
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chico: another issue is that sugar is implicated in inflammation, and inflammation, in cancer.
i'll send you some research on all the above within the next week or so. currently busy with other cancer-related research.
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Thank you so much Luce. I appreciate you taking the time to respond to me as I know that you currently have enough on your plate.
I look forward to receiving the research when you have time to send it. xx
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chico: i was vegan for ten years, so totally understand your affection for carbohydrates. different things work for different folks. there are people out there who attribute their longevity or even cure to vegan diets. that may be because vegan diets are low in some amino acids that cancers seem to like: methionine, say. and whole-food vegan diets may keep IGF-1, a growth factor, low. i think you are totally at an advantage as far as getting beneficial micronutrients and phytonutrients goes, especially if you don't "waste" your food intake on empty calories. i would possibly look into balancing your copper intake, since copper, if you have too much and too little zinc, may be utilized for angiogenesis (growing of new blood vessels, which may sound like a good thing but really shouldn't happen much in adults other than in, say, woundhealing) by the cancer. many otherwise super-healthy vegetarian foods are very high in copper (avocados (because copper is a fungicide and even organic ones are sprayed with it, and much gets incorporated into the flesh), for example, and chocolate. by the way, i still eat chocolate, and a little sugar: i go for 88% or 90% cocoa, and they do taste very sweet to me at this point, and the little sugar added gets possibly offset by the antioxidents and fiber in chocolate, and slowed down by its fat. my sugar addiction is not re-triggered by the approx. 1 teaspoon a day i may consume that way. by the way, purportedly, some modern kids consume as much sugar in a day as our pre-ag ancestors did in 2 years. that may give you an idea why or bodies may not be adapted to the excess sugar that passes as normal these days).
don't expect too much in medical studies that show a direct sugar-cancer link. not many have been done; it is hard to finance them. you need to look at the results of eating sugar--glycation, high insulin, inflammation, etc. all those factors play a role in cancer formation and proliferation.
oncologists (other than naturopathic ones--google FABNO if interested. some insurance pays to consult with a naturopathic oncologist on the side, or your treating clinic or hospital may even have one on staff. they are generally much-better versed in nutrition) so far are NOT trained in nutrition, nor is any other medical doctor UNLESS they seek out such training. just something to be aware of. does your oncologist have a nutritionist? why those may still be very conventional (and push the USDAS food pyramid, for example, which is almost-certainly too high in grains, which can be inflammatory for many and tend to not be all that nutritious, compared to, say, vegetables or good fats), i have never spoken with one (here at OHSU, for example) working in oncology who a-okayed sugar.
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I realise Luce that I need to really get on board with this. I have bloods taken monthly and my glucose levels are good. I have never been prediabetic. I had 12 years from bc Dx during which time I binged on chocolate however like you I am now enjoying very dark chocolate but just maybe too much. Also I have always had a massive problem with poor sleep (5 hours max a night) so have lower caffeine choc and coffee at night. I had a blood test for inflammation a few years ago but it was fine although I do have arthritis. Gosh I need to get to grips with this. It’s hard though as I love sugar and my life away from MBC is wonderful.
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chico: sounds like you are doing good! enjoy that life or yours. don't stress too much about diet or anything else. there is much we can do and a bunch that is out of our control, no matter what, and we may never know which is which, since science is pretty behind on much of cancer still. i only dink coffee until 10 am since its half-life is 6 hours, meaning the caffeine stays in your body for about 12.
i really cleaned up my sleep-hygiene when i first had cancer four years i am still pretty good, but it did not prevent the recurrence.
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chico: this is as mainstream--md anderson-- and direct as it gets.
https://www.mdanderson.org/newsroom/2015/12/sugar-...
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Sugar doesn't feed cancer in particular, so John's Hopkins is correct as usual. Every carbohydrate you eat is broken down into sugar and feeds all cells healthy and normal. Once it is broken down, sugar is sugar; we live primarily on glucose. Carbohydrates are one pillar of a healthy diet. But that is the wrong question to ask.
It is the insulin spikes caused by added refined sugar that drive inflammation and cancer growth. This effect is very strong. In addition, cancer patients are highly susceptible to nutritional deficiency due to both drugs effecting your ability to digest and absorb nutrients as well as damage to the liver by both the drugs and the cancer. Sugar has zero nutritional benefit beyond calories. The phytonutrients in vegetables have high activity against cancer, and you want that stuff coursing through your veins. There is an mTOR inhibitor in olive oil that shows higher activity against cancer in a petrie dish than any pharmaceutical available in the clinic.
In sum, there is a big difference between getting your calories from nutrient poor simple sugar that spike insulin and nutrient rich foods like complex carbohydrates, olive oil, legums. Interestingly, high levels of protein also drive cancer growth by increasing levels of the insulin like growth factor (IGF-1) so high protein diets, though popular, are not in fact good for cancer patients (or anyone IMO).
You want to eat nutrient rich complex carbs ( vegetables) and good oils (olive oil, nut oils) in abundance, some whole grains and legumes and some protein per WHO guidelines per adults ... <50-60g per day of protein from all sources. 60g of protein is very little. 3 oz of steak has 25g of protein. Since there is protein in whole grains and legumes, you get enough protein from eating a single serving of eggs, fish or meat 2-3 times a week, max.
A pure vegan diet is not necessary. Fish and fish oil are good for cancer patients. But a well structured vegan diet is great if that is your preference. One can do the math and determine how much protein an adult needs. It is very little. Any more and you are driving up growth factors that are problematic in an adult. Kids are a different story, BTW.
The first book I read on diet and cancer was Anti-Cancer A New Way of Life by David Servan-Shreiber. This well researched book remains the cornerstone of my approach to cancer nutrition. I've since become interested in the work of Valter Longo. Longo is good at summarizing recent research from several groups studying nutrition an cancer and he is a good communicator. Longo's book is called The Longevity Diet, but there is a chapter on the research into cancer nutrition. The book is basically this research paper re-written for a broad audience. You want to follow the links to the mouse studies which are astonishing. This is a good video. He has many good videos.
All that said, after a long foray into more recent research, David Servan-Shreiber's 20 Rules for Cancer from back in 2010, anticipates and sums up very well what Longo says. Most FABNO reference his work and the 20 rules because they remain solid. Cancer nutrition is a confusing landscape because it doesn't take much to throw a website out there and opine on nutrition. No one will stop you. But the peer reviewed university research has achieved a consensus on the diet to manage cancer.
To answer your question, Chico, refined sugar is not in the recommendations, unfortunately. However, like Luce, I have a small piece of 80%-90% dark chocolate every now and then. We all need a reason to live.
I will add that I've understood the research for a long time. It wasn't until this Spring that what I ate actually conformed to the recommendations. I was scared straight this Spring when my cancer became very aggressive. My liver function dropped to <40%. At that point I felt that I was eating and not getting nutrients. I had to seriously optimize what I ate. And I did. And wow. I am on chemo. 90% of the time I feel better than I did before cancer. It seems hard to drop added sugar but once you feel the effect ...
>Z<
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zarovka: i completely agree with everything you write but have to point out that a medical ketogenic diet(i have not looked into any other type of ketogenic diet since those are not of interest to me) is not high protein, but low to medium protein. (please see figure 1 : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC42154... ) it often restricts beef, since some people react to eating beef with high IGF-1. i have a beef with the keto diet myself (and would only consider a modified-for-cancer version called "clean keto" that emphasizes phytonutrients and high-quality fats (the early medical ketogenic diet used shitty fats. still worked for seizures and such in children, though)---too low in vegetables other than leafy greens and some cruiciferous ones, since most other vegetables are too high in carbs to make it possible to stay within 15-25 g of net carbs a day (a sweet potato, for example, has about 25g of carbs)---and therefore haven't adopted it, but i believe it could help slow down cancer, and has done so according to some medical doctors, at least one of which has stage-4 cancer herself.
i am all for a modified vegan diet, though, that includes some animal foods, like a little fish and fish oil, as you describe. that is exactly how i ate when i was first diagnosed, for several years. longo is great, and the book your reference sounds great, too. i'll get it from the library. (still waiting for my copy of longo's that i put a hold on what-seems-like long-ago.)
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Thank you Z & Luce for responding to my sugary question you have certainly given me food for thought haha. Seriously I have admired you Z since joining this forum also the wonderful Bestbird & Cure-ious and now to have found Luce wow. You all also have MBC but are so willing and generous to share your huge knowledge. I can’t tell you how much you have helped me and I am sure many others. Wish i could repay your kindness and hope that I would be as generous if i was called upon and of course had the knowledge
Thank you Ladies.
Chico xxx
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