Abemaciclib Verzenio for Stage IV
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at all - I did not have the same symptoms as you did, but it was a life changer when they switched my dose to 100 mg 2x/day. I was so ill, I did not wait to finish the cycle, but took a 4 day drug holiday and then switched to the 100 mg as soon as they could get it to me. I hope the dose reduction will work for you. Please keep us posted. I missed seeing in the thread if they had tried another CDK4/6 inhibitor? That could be another option, although there are side effects with them as well of course. I started on ibrance by my ANC couldn't tolerate it, so I was off more than I was on. Then switched to verzenio. Praying all goes well.
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Just started Verzenio today. It feels good to just start doing something and have a plan for moving forward. I have colitis and daily diarrhea already so a bit concerned, although immune suppression usually improves the colitis
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Lehrski- let us know how you do over the next couple weeks and months....... 🙏 all goes well
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Thanks HopeandGratitude. By the way, I love your username. Hope to have hope again soon. And a friend just gave me a gratitude jar
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Hi Lehrski,
Welcome to the Verzenio club. It’s a good treatment but does have a few wrinkles so as H&G indicated, stay in touch.
Wishing you all the best
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Day 3 of Verzenio and the side effects have hit with a vengeance. Nausea (trying really hard not to throw up), stomach cramps, a lot of diarrhea. I took Imodium, drank some Gatorade and had a two-hour nap and am feeling a bit better. Going to see if a bit of dry toast will stay down
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Oh dear. That’s quick. What dosage are you on? I started at 200 mg twice a day and simply could not hack it. I told my MO that he would be treating a stick insect if this continued as I found the nausea overwhelming. I found ginger gravol lozenges helpful. The most important thing is to keep your fluid levels up. Gatorade is good but you can also try adding an electrolyte mix.
Sending positive thoughts!
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your doctor could also prescribe lomotil. Helps with cramping and diarrhea, although I was taking maximum immodium and maximum lomotil - at the same time!!!!!, so had to dose reduce. Lower doses are still very effective.
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My doc prescribed 150 mg. I think the colitis makes my tummy more sensitive. The diarrhea I’m used to from the colitis and is tolerable at this point, but I’ll see how it goes over the next few days. I find the nausea harder to deal with. I hadn’t heard of the gravol lozenges.
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I started taking Verzenio 150mg twice a day in November of 2019. In the beginning the side effects were pretty bad. I had nausea and unpredictable diarrhea constantly. I lost about 10 pounds because I was afraid to eat anything if I wasn't home near the bathroom. I definitely wasn't able to eat any fruits or vegetables and I was basically living on the BRAT diet. My oncologist changed my Verzenio dosage to 100mg twice a day and things started to improve. Luckily the nausea has pretty much gone away completely. My radiation oncologist recommended I take Metamucil for the diarrhea. I thought it sounded crazy, but believe me it's been a game changer. I take one teaspoon in water around lunch time and another around dinner time. Now I'm pretty much able to eat anything I want. Which is good and bad. The Metamucil adds bulk to your stools, and that seems to take care of the loose stool problem. I do occasionally get diarrhea or stomach issues if I really abuse my stomach by eating too much crap. Overall the worst lingering side effect I have now is fatigue and weakness. I'm also receiving injections of Xgeva and Fulvestrant once a month, so I'm sure that contributes to any side effects I'm feeling. I would recommend to anyone on Verzenio try the Metamucil. Like I said for me it's made a world of difference.0 -
Welcome, ReneV, and thank you so much for sharing your experience! That Metamucil tip is so helpful and exactly the kind of firsthand knowledge that benefits other members.
The Mods
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ReneV, I have been on V since Dec. 2019 100 mg 2x a day, in May I went to 150 mg 2x a day and have that lovely "D". Several times a day. Listening to me in the bathroom you would think I was urinating. I've been taking an anti D, every few days, but I think I will try the Metamucil, I hate taking pills and would rather go about a more natural way. As for eating junk, I don't. I'm a pretty good eater.
I'm also on the Faslodex and Xgeva. Was on Faslodex in 2014, no SE's from that. Been on Xgeva for 5-6 years, no SE's from that either.
Wishing you all the best.
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Hi Goldie - if you were doing ok on 100 mg 2x/day, why did they up your dose? Especiallyif your were tolerating it well?
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My TM's keep making great strides.
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Goldie- have your TMs correlated with progression? My doc won’t do TMs.....just PET, MRI and symptoms
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Hi Goldie, definitely try the metamucil. I'm not joking when I say it changed my life. I was so worried and frustrated thinking I couldn't live a normal life anymore, but once I started the metamucil regularly things are about 90% back to normal for me. I have regular BMs in the morning, sometimes more than one, but once that's done, I go about my day without problems. Occasionally I get some stomach cramps and I might take a swig of Pepto Bismol at that point, otherwise my digestive system seems to be fairly stable. I really hope it works as well for you. The key is being consistent with it. Twice a day no matter what. Mid day and early evening for me. Let me know if it works, keeping my fingers crossed.
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H&G, Back in the day, before mets, when I hit my 5 year mark cancer free, my MO said I didn't need to come back for year and we just needed to do annual check ups. I wasn't comfortable with that and told him I wanted to stay on 6 month check ups with labs. It's just a blood draw, easy peasy. Well, my TM's started to go up, so we scanned and in 2014 I had bone mets. My bone mets have continued to spread and my TM's continue to go up. I only do scans like yearly. I'm not one of those that do them every 3 months, I refuse. Especially since I feel fine. I have no pain what so ever. My only complaint is SE's from the drugs I'm on. I love my MO, he pretty much lets me call the shots, but if he disagrees, he lets me know. But we are usually both on the same page. I haven't really answered your question, but every time I have a new nuclear bone scan, I have new spots so show up. So I guess the answer is yes. I do not have any organ involvement.
So you don't do any labs at all? How often are scans. My labs show my white counts, red counts, liver, kidney and more of course, but all of those are either within normal range or not too far out to be concerned.
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goldie- wow on.the bone Mets but so thankful no organ involvement!!! I have PET scans every 3 months and have CBC and Chem panel every month and see my MO every month. This new MO doesn't have faith in TMs and feels they really only lead to anxiety. My previous MO had done TMs.
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I feel that the radiation from all of those scans can't be good for me. But like I said, I don't have organ involvement and feel fine. So I'm ok with just doing labs, looking at my TM's and monitoring them. I don't get anxious over them. I used to, but anymore I expect them to go up. They will never be normal. But yet I know of people who's TM's are in normal range, but have cancer in their organs. So, who knows! It's all a crap shoot and we are all different.
I'm 6+ years stage IV....can't cry about that now can I? I'm very grateful.
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congratulationd on 6+ years. That's a dream. I am at 1.5 years and stil cant really accept it. I guess one day I will. Its not going anywhere......
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Rene V - going to.give this a try. We are going away a few days starting Monday, but will try when I get back. Your D story sounds so much like mine. Fingers crossed and faith this will work. I will report back on it!
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HopeandGratitude, thank you so much for responding so quickly, I am finding following this support group isn't as easy for me as following my other support group, the whipple warriors for pancreatic cancer, it's probably just me but anyway the fevers are back again, called my Dr today, it's been 100.4 since yesterday, Tylenol brings it down hoovering around 99.9, she wants me to stay off the verzenio, I see her Friday for my shots, she feels and I agree that once this verzenio reaches a certain leveli in my body it brings on these fevers, my blood count is of course pretty low, I'm on 150 mg twice a day, my quality of life is pretty bad, always super fatigued, nausea and bad stomach pain, I think on Friday she plans on reducing the dosage, I'm so afraid that will make it work less effectively, I was really hoping my body would adjust, scheduled for scan in September, so afraid of my job also, work in an elementary school, come September afraid they won't let me in school running these fevers......ugh
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emac877, thank you so much, I am still struggling with this verzenio, started with the fevers again, 100.4 today and last night, Dr is taking me off till Friday when I see her for the shots, I think she's going to reduce the verzenio dosage, currently at 150 twice a day, this fatigue I'm experiencing with this is so debilitating, I have to sit for half an hour after vacuuming my living room, suppose to return to work in September, I don't know how I'm.gonna do this, hoping the reduced dosage makes me feel like a human again......ugh
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Don't worry about a lower dose being less effective. When developing protocols during early drug studies, they often aim for the maximum tolerated then scale down from there. It's actually sort of an arbitrary guessing game as to how strong to make the things. I speak as a retired pharmacist who spent time working for manufacturers...
Now approaching two years on 100mg twice a day. Could not tolerate 150mg. My CA 15-3 tumor marker remains around 50. PET scans every few months show no new areas of concern. Some fatigue but not too bad, probably because I'm slightly anemic from treatment. We were able to travel before the pandemic. I garden, do water exercise, research my family history, play the violin and wait for coronavirus vaccine to become available.
For an easier to transport alternative to the gritty psyllium bulking agent, I take two FiberCon tablets daily at noon. The generic calcium polycarbophil is found in the laxative section however it works to control diarrhea also.
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Please do, I'm anxious to know if it works as well for others as it does for me.
Good Luck.
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Hi atall, I'm sorry to hear that you're struggling so much with the Verzenio. How long have you been on it? I started out with 150mg twice a day and apparently it was just too much for my system to handle. My doc reduced my dosage to 100mg twice a day and I too worried that it wouldn't be as effective. I'm not sure yet how well it's working because I haven't had a scan yet, but I'm suppose to have one done around September. Hopefully your side effects with subside. I started on the medication in November of last year and it took about three months and a lower dosage for my side effects to even out. Hopefully yours will too with time.
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Hi I am doing well on Verzenio 100mg twice a day. Curious as to how often you see your oncologist, monitoring with CT scans, bone scans, MRI etc. I am 8 months on Verzenio and now see my oncologist every 2 months, I have a portacath so I have bloods drawn once a month (which also serves to keep the portacath patent. I am allergic to iodine so instead of having CT chest I will be having MRI brachial plexus every 4 months, bone scan every 4 months, and US abdomen twice a year.
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Well, I passed on the Metamucil. I looked at the ingredients, and that did it for me. I think my DH has some psyllium pills, I will try that, or try to find a sugar free Metamucil, WalMart didn't have it.
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goldie 0827 - which ingredients turned you off and why? Seemed you are averse to sugar? The only sugars I see ate from the fiber, no other sugars added. Or was there something else? Ah.... I do see the aspartame. I am about to give it a try...so was wondering.
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H & G. yes the aspartame and yellow 6. The Eqate brand had sucrose.
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