Abemaciclib Verzenio for Stage IV
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I’m going to be starting Verzenio plus Fas soon having been on Ibrance plus various hormonal combos for about 2 years and then Afinitor and Faslodex for past 7 months.
Just wondering if there is anyone on the thread who followed the diarrhea treatment protocol from Constantine that Z listedin the original post?
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Moissy-I have followed their diarrhea plan, & it worked well. So well, now I am constipated.
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Sue - Thanks so much for the feedback. I'm going to follow his protocol.I sure hope you can find the middle ground on this!
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Hi all,
Well it's been a month on the lower dose - 100mg - of Verzenio. Got my tumor marker results today from Wednesday's blood draw. YAHOO! Dropped from 783 to 403!!! So I can stay on the lower dose which makes it possible for me to eat and not have all the yucky stomach problems. Still have diarrhea a few times a week. Not taking Immodium and just trying to eat things that help my digestion.
I was full of anxiety waiting for the results since this was a test to see if the lower dose would work. I do hate the test results waiting. Drives me cra cra. So grateful that it is working.
I asked the Onc about dropping FAS and he said that he would recommend staying on it as the research indicates the two drugs together are better. As previously posted above there was an insight I found compelling - that is the cancer is being blocked by the V but if I took away the Fas it might try that pathway.
On to another month of V and Fas. Love me some Verzenio now.
Chats
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Chats, im so very happy to hear the great news!
Congratulations on both: the reduction in CM and the SE!!
When I was on Fas I had no SE, I wish I could go back on Fas when/if the X fails.
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Hi ladies, I recognize a lot of you from other threads. Please forgive me if you saw this cross-posted on the Halaven thread. I just got news of progression and my onc has given me a choice of Halaven OR Abemaciclib + Arimidex. Any thoughts? Pros and cons?
As you can see from my epic bio below, this is my 6th progression in 8 years at Stage IV. I got 20 months out of weekly Taxol. Not easy-- it snatched me bald, wore me out, and jacked up my feet and fingertips--but it did the job for a good while and I am thankful for that.
My onc first mentioned Halaven, but it would be nice to walk away from the chemo chair for a bit, and also Abemaciclib would give my hands and feet a chance to recover from neuropathy. But then... another AI... groan. How I hate those things. I've had all of them except this next one, Arimidex. After 8 years, I think I would commit a felony for a jigger of estrogen.
Any thoughts on the side effect profiles, Halaven vs. Abema? Thanks for any insights you might spare.
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lulubee, if you are in the States I believe Verzenio can be prescribed as a monotherapy. If you read a few pages back, you'll see luce has been using it as such and has given detailed accounts of it. 😀
On a side note, has anyone heard from luce? She hasnt checked in for a while now 🤔
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hi, I’m still alive. I’ll be coming off an 84-hour water-only fast today. Zero hunger throughout, so that part was easy, but it made my breathing much, much worse. I hope it is just the loss of strength, and I’ll bounce back. Still responding to Verzenio but only minorly so. Stopping melatonin for a month to see if that might interfere with Verzenio, but I may just be near the end of its efficacy as mono-therapy. It works much longer in combination with anti-estrogen therapy. My oncologist says it’s too late to add Keytruda; I’m past the optimal-response window but would of course still be risking its side effects
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My onc said she would prefer me to take it paired rather than as a mono. If anyone here has taken both Verzenio and Halaven, I would love to hear how they compared and so on.
Luce, I am new to this thread so I don't know what the reason was for your fast, but I wish you the best as your recover from it. Bounce back! That is the prayer on all our lips, for all of us, every single day. This stuff is hard.
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lulubee, I was on Halaven 6 months , results were amazing. I did get septic in May & had port removed. While recooperating from sepsis I went white water rafting. Everything was going fine until last set of rapids. I felt like I got whiplashed & my sternum was bent in half towards my back. The sudddn pain scared me, & it has taken a long time to heal. I had pet scan before trip & found out I had liver mets when I got back. Dr decided to start me on Verzenio. The worst side affect being the diarrhea, which has now been under control . My CEA has doubled in 2 weeks, I am doing mono, which I have brought up to Dr. No real response there. Getting rescaned this week to see what is up w/liver. I was thinking the same the other day, This stuff is hard!!
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Sue, you are amazing! White water rafting while recuperating from sepsis?! Thank you for sharing your experience with Halaven and Verzenio. All the best for your scans this week! Hopefully the CEA flare is an anomaly of some sort and your liver is behaving.
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Well ladies, I've joined this particular club. I'm on day 3 of abema. Plus faslodex.
It's a long story but we're re-trying anti-hormonals after 14 months of Xeloda. My oncologist is into trying to save me from iv chemo as long as possible. I was on Fas/palbo for a year with no problems.
My only question so far is -- any consensus about taking it with food? Or not food?
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hi, package instructions says with or without, as did the oncologist i asked (not mine; i was already out of the consult room when i remembered the question) BUT if you dig deeper, physician's insert says up to 30% better absorbed with fatty, high-caloric meal, just as ibrance is. i take verzenio on empty stomach twice a day, though, since i only have a 6-8 hour eating window each day and never eat mornings or late night. if it were a once-a-day deal, i would definitely take it with a meal, because i am wondering if it would work better that way. probably more digestible, too. i experience mild nausea in the mornings after taking it.
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Hi All.....I never post much but I did want to let everyone know that as of my last bone scan in early August my MO said I was NED. So I started the Verzenio/Faslodex combo around January and had to reduce my Verzenio to 100 mg because of the diahrrea. That changed everything. No more stomach problems as far as that side effect is concerned. He said it could stay NED on Verzenio for up to 36 months. I know I may sound ungrateful but while that is good news, I am still tired, can't do anything that involves me bending forword like sweeping, making the bed, the normal everyday life things. As long as I can bend straight down (no bending of the knees) to pick something up then I am fine. If I have to squat down at a grocery store to look at something on the bottom shelf I really don't know if I can stand back up. So the cancer is in such a small part of my bones which is the pelvis area but it affects so much of my life already. I now have daily pain that is strong enough to take pain meds for. I am grateful that I am now back at work and have made it for 3 weeks at 40 hour weeks. That has been a huge triumph for me. After the diahrrea was finally controlled then the crying (like not able to go to work for days at a time) for a small thing in my head that someone said, I was so uncontrollably crying that I couldn't function. That is under control now too.
I would still really like to know if I am the only one that has such a drastic reaction to the AI's.
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Hi Spicedlife,
I was on Faslodex from 12/16/17 thru 5/22/18. We added Verzenio Feb 22 thru Jun 27. Started the Verzenio at 150 twice a day, but had to lower it to 100 twice a day. I was probably off it a total of 3 or 4 weeks for adjusting dose and SEs. My 1st scan was good after 3 mos on the combo, but the next month my TM started going up (from 89 to 214). I also had a possible lung infection. Long story short, I'm off of it. I was able to manage the diarrhea with Imodium even on a 3 week trip to Europe. But I was so tired and had almost no appetite. I lost weight, but i wasn't trying which is scary. Basically I felt lousy. I'm now on Xeloda, 1500mg twice a day. So far I feel great. First TM on Monday. Trying not to get excited,but will freak if it goes higher.
But as they tell us: Everyone is different.
Karen
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Pajim - I just started this treatment also. I'm on day 7. Going pretty well so far.
The only thing I will throw out about my experience is that I decided to start on probiotics a few days prior to starting Verzenio. After the first probiotic dose, I felt gassy, which continued with every dose and by the third day of probiotics (and no Verzenio yet), I had diahrrea, which I've read can be a side effect of probiotics in some people.
So in an attempt to prevent diahrrea, I gave myself diahrrea - LOL. So stopped the probiotics and things normalized. On day six of Verzenio, I had some diahrrea, but very manageable with Imodium and Pepto.
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Thanks Luce....I had not read that part in the MD drug info. Good to know.
I have been okay taking it with or without food, but now I will to make a point of taking it with food.
I had an almost 2 week major decrease in diarrhea recently after finishing CyberKnife treatment....which was so great! But, it’s possible my bowels slowed down as a side effect from radiation....well, now the diarrhea has returned as I start week 7 of Verzenio, but managing ok with Imodium. Tastebuds, appetite are wanky now...some decrease in stamina, but I just just keep moving no matter what
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http://uspl.lilly.com/verzenio/verzenio.html#pi
Effect of Food
A high-fat, high-calorie meal (approximately 800 to 1000 calories with 150 calories from protein, 250 calories from carbohydrate, and 500 to 600 calories from fat) administered to healthy subjects increased the AUC of abemaciclib plus its active metabolites by 9% and increased Cmax by 26%.
- This is very interesting, but hard to follow this recommendation on a 12 hour dosing schedule and dietary restrictions
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Ladies,
A. Consideration for those who are experiencing low blood counts.
I've been on Abemaciclib for 6 weeks with constant diarrhea , less energy and lowered blood counts. Currently, I'm on break due to Hemoglobin dropping so low that I needed two blood transfusions. The GI team ruled out internal bleeding and the thinking at the moment is it's related to Abemaciclib. I will be meeting with my MO and Hematologist to work on what's next since my blood counts are still very low. When I return to this drug on a lowered dosage I will request weekly CBC's and CMP's for awhile to check on counts.
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Max - So sorry to hear your counts dropped so low and the diahrrea isn’t giving up yet. My memory is that you and I were both dropped to the lowest Ibrance dosage because of low blood counts and did very well on it. I had beenhoping that Verzenio was going to be easier on our counts from what I had read. Bleh! Are you feeling better since the transfusion?
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Those of us that are neutropenic might want to check out this findings. Being proactive is the key here. Being on an antifungal diet might help, although unlikely when it's systemic.
How Chemotherapy Increases the Risk of Systemic Candidiasis in Cancer Patients: Current Paradigm and Future Direction
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4810127/
Most studies place the crude mortality rate due to C. albicans infections at around 30%–40% [11,15,16,22], but some have estimated this to be as high as 46%–75% [23]. Additional challenges associated with managing systemic candidiasis include the lag time between onset of symptoms and initiation of antifungal therapy due to difficulties in diagnosis, and an increasing rate of resistance against commonly used antifungal drugs.
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Moissy,
Today is a good day and I'm feeling normal; normal is wonderful. The Diarrhea stopped when I went on break and I'm hoping my counts do better. I will be monitored very closely, blood draws every few days and then ??. The plan is still very pliable as to what's next.
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Ladies, I need advice. I'm a constipation girl. Have been for 40 years. I have zero (well, next to zero) experience with diarrhea.
So on the 8th day (yesterday) I had my first round. I then took two immodium [as suggested by the pharmacy]. The pharmacy (and the label) tell me to take another every 12 hours. But this morning after breakfast/abema/immodium I had a lot of trouble with my stomach. It was talking to me for hours! Rumbling, stumbling, rumbling some more. I realize the two medications are fighting for control of my belly.
My question is, what should I expect from taking this? Solid stools? Still more diarrhea but only once every couple of days? What? I'm inclined not to take another immodium until I know what will happen to me but I'm hoping you -- with all the experience -- can help.
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Pajim, I'm not on Abemaciclib BUT I did have terrible non stop diarrhea while on ibrance and was taking three Imodium @ day to deal with it
These drugs cause stomatitis, thus its important to replace the good bacteria that is being destroyed and to use digestive enzymes to facilitate the absorption of the foods you eat.
Take this for what it's worth...what ultimately stopped the diarrhea for me was eating a grilled cheese sandwich every day. I don't know why, I suspect the meds interfered with calcium absorption.
After eight months on ibrance I never recovered my ability to digest and assimilate foods, the damage was permanent and the gastroenterologist I went to see at MSKCC couldn't help me. So now, nine months since I stopped taking ibrance, before I eat I still have to take hydrocloric acid, bile salts and pancreatic enzymes and continue to eat imported only cheeses as our cows are too sick and the level of mycotoxins in their meat and milk is too toxic for people like us that are immune compromised. The Europeans and Switzerland in particular have very strict rules about levels of mycotoxins allowed—which are well known carcerogens—in their food supply and also they don't give their cows growth hormones which are also highly estrogenic.
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Well that sounds awful. I'm so sorry.
I haven't had a bowel movement since I took the first Immodium so that part is OK. Maybe yogurt and a lot of it. . .
I do like grilled cheeses though. If you think that'll help. We have a grilled cheese food truck in town.
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I bless my cheese sandwiches everday, because when I don't eat them my diarrhea and gas comes back with a vengeance....if you like them you have nothing to lose by trying to see if they do the trick when necesssary....and congratulations on your ten years long survival, I'm so happy for you.
Cambridge has great food, I had great meals while I was working at your local CBS TV station years ago...I designed their newsroomand broadcasting facility. Great seafood and lobsters!
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Pajim-
Hello- I'm starting week 7 of Verzenio and still trying to figure out the diarrhea! It's just not very predictable. Lately, it's been occurring at night and very early in the morning. Recently, I had an almost 2 week reprieve from it, but attributing it to side effects of radiation to L4 with CyberKnife. I think my bowels slowed down with radiation. The beams travel through intestines with a much lower dose of radiation before hitting the target with the high dose....now, I am about 3 weeks post rads and the diarrhea is slowly increasing...but well controlled with Imodium. I have a bottle of Lomotil that was prescribed for me “for those times when there must not be diarrhea while out on the town in a long evening gown" per Onc nurse - LOL
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....and like Miaomix I am adding more cheese....actually, I have been craving it! Sometimes I just melt grated cheese on tortilla chips real quick in the microwave and it makes me smile
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Well I answered my own question. Amazing what time will do for you! Wait three days, get some solid stools. Then things deteriorate again. Take two more Imodium and once again listen to my stomach talk to me for hours. LOL!
Not to mention that my waistline and gut feel two inches larger than they did two weeks ago.
If I can get away with two Imodium every four days I probably have no cause to complain. Except that I hate an unsettled GI tract. Behave already!!
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Hello ladies. I just wanted to give an update on my experience with Verzenio + Faslodex. I started back in early June with 100 mg of Verzenio (reduced dosage) and the normal Faslodex dosage. I just receive my tumor marker (CEA) results and I'm pleased that they continue to drop each month. I haven't had a scan yet (decided to postpone until November) but my sense is that my liver tumors are quiet and probably either stable or regressing a bit.
I have had no problems with diarrhea, which I contribute to starting on the reduced dose of Verzenio. My only side effect is lowered blood counts and the lowered energy and stamina due to the anemia. I love not having to go in for chemo, and all in all I find this protocol very easy. Crossing my fingers that I can stay on it for a good long run.
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