Abemaciclib Verzenio for Stage IV
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Thanks H&G, SeeQ & Hopfull. I was supposed to receive the meds on 2/18. I've been on the phone with them every day since that day. That's a good idea you all give about overlap. I'll need to talk with insurance further because of this debacle. Pharmacy claimed in the past they can't do that, so I'll ask PA I see tomorrow about rewriting the script. It's frustrating they didn't think out of the box; I shouldn't have to. At least I will have backup now once the errant FedEx delivery arrives. Tomorrow's delivery comes from UPS.
GrammyKate, welcome to the thread. I've taken Verzenio for 6 wks now and lucky to have had only a couple bouts of diarrhea that a dose of Imodium took care of each time. Otherwise, I've been using Metamucil as advised here and it's working well for me. The only other SE I've experienced is hair thinning, but it seems to have slowed now. I wish you great success on this drug.
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Well, well. I just got a text from FedEx they are delivering my meds today! Guess me getting on them yesterday put something in motion. The agent told me without power, they "had no idea" when my meds would arrive, but know I am a priority. Really? They have no backup themselves for tracking? Ugh, and so it goes.
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Just met with my doctor, and I have a question. They said I need to follow the same contact precautions as when I was on chemo (sex, toilet etc). Have y'all heard this?
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Grammykate, I never got that warning. I'm sure others will chime in.
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Grammykate - no, I never got those warnings.
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Grammy , no warning here as well.
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Just spoke to Verzenio care line. They said Verzenio is not chemo, and they dont have any information on fluid contact.
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GrammyKate, I never received any warnings about physical
Crossposting - I got great news at my MO appt, yesterday. PET/CT scans are totally clear after 7 mos on 150mg x2 Verzenio plus anastrozole. So, no change in treatment, just fewer appts and longer time between scans.
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SeeQ, that's great news!
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SeeQ, wowzaa! That is awesome news. Doing a happy dance here for you!
GrammyKate, that was my understanding about Verzenio, that it's a targeted therapy and not actually chemo, so that was an odd warning you got.
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SeeQ- that is FANTASTIC news!!!! Breathe easier!! I achieved stable disease on verzenio for which dear Lord I am so grateful!!! but would have loved to have seen those buggers disappear!!! Not been able to go more than 3 months without a scan.
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SeeQ,,, yayyy. I’m so happy for u.
Well I’ve been off Verzenio for a week due to my low ANC from last week (.5). Dr told me be off a week do labs again, so I did labs yesterday , today my ANC came back at .8. MO says he need at least a 1.0 ANC so I have to be off another week, labs again next Wednesday, I’m very disappointed. But, it is what it is. MO hears in voice the disappointment, he says he’s sorry but we have to be safe. Fingers crossed next week my ANC is better and I can go back on. I already picked up new dose of 100mg . Hugs e
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Hopfull2, fingers crossed your ANC rises for next week and 100 mg is tolerable for you.
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I know my tumor markers are low, and that currently my 6 bone mets (the usual places) are inactive and glow less on the bone scans, but during my monthly blood draw my tumor markers jumped from 25 to 30. My oncologist reassured me that this means nothing, but I wanted to check in with you folks to see what type of tumor marker numbers you are living with. I am luckily pain free, was diagnosed one year ago, and have been given at least 9 more years to live (per the oncologist). Here are my oncologist's words regarding the higher tumor marker numbers, "I promise you, that is not a "jump" - it's just stable." Thank you so much for sharing with me.
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woodlands- it's tough to say with tumor markers. It is definitely good they aren't skyrocketing. I would see what your next months markers look like and see if there is a trend with them to.continue increasing. I have liver and bone Mets and my markers were stable for many many months while my tumors were stable. I am monitoring CEA, CA 15-3, and CA 27.29. They all started moving up a few points one month and a few more the next month. My MO and second opinion MO are watching closely and scheduled a CT scan.and bone scan for 3 months Instead of 4 as they are suspicious. Not sure if anything is happening but with the TMs starting to rise, they want to be on top of it. If your TMs keep rising, maybe time for s CT scan to be sure everything else is quiet?
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woodlands, i agree with your onc that 25 to 30 is not something to worry about, but will want to keep checking them periodically for any steady increase and of course you'll be scanned. For some, TMs are meaningless because they are low while scans show progression. Mine are reliable and my last numbers a month ago were in the hundreds up to 500+. Breathe. Hugs.
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I agree about the 25 to 30 movement not being significant enough that during single instance it would confirm progression. My wife's periodically moved up and down in that ballpark and it meant nothing. It's a multiple test trend over time that means something.
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Hello abemaciclib friends. Scans Thursday. Tumor markers increasing a bit, so they pulled in the 4 month scan to a 3 month scan. Just about 2 years now on a CDK 4/6 inhibitor plus AI, with a year on faslodex and xgeva once bones got involved. So feeling very blessed, but praying it continues. His will be done. (Cross-posted to liver mets thread - liver where it all began).
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HopeandGratitude, fingers crossed the blessings continue. In your pocket for Thursday scan.
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I'm on day 6 of Verzenio and I'm having some weird stuff going on. Diarrhea started today, but I was expecting that. My stomach feels like it has a huge rock in it. My left shoulder, across the top to my neck is very painful. I can't take a deep breath without increased pressure/pain in both areas. Any ideas?
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Grammykate - Day 6 was right about when the Big D hit me too. I do not recall the stomach sensation, but verzenio does strange things to the abdominal area/digestive system for sure. I do not know and did not experience the pain in shoulder to neck. If you can't rule that out from something else, I would certainly check in with my MO.
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GrammyKate- I would definitely ask your MO. The first thing that popped into my head was "referred shoulder pain" which I experienced, years ago, after abdominal surgery that made me really bloated for a few days, then again early in my treatment... but my liver is/was enlarged, plus the GI issues from Verzenio. I'm not sure that would be the same in your case. I'd ask the doc.
Hope - in your pocket for Thursday scans.
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SeeQ, I thought the same thing but for liver it typically refers to the right shoulder not the left. I can’t think of anything similar when I was on it but did have some bloating with the diarrhea.
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sadiesservant,,, I wish you luck on scans. Hoping for good results.
Tomorrow I do labs to see if my ANC is at least at a 1.0 so I can get back in Verzenio Thursday. I’m going on 2 weeks off. Fingers crossed 🤞. Then in about two weeks labs again and TM will be checked. Labs seem never ending at times.
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Sadiesservant- the first time I had the referred shoulder pain it was actually on both sides and it was strictly related to the gas/bloating after surgery (C section, almost 30 years ago :-o ). After four days, they finally gave me meds to relieve the bloating, and the shoulder pain went with it. I don't remember which side it was recently. Anyway, that's just a personal anecdote. I'd hate to let it go and find out it was something else entirely.
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Starting vercenio this weekend. Dreading it. So concerned about side effects. Xygeva next week
Any words of wisdom would b3 appreciated. Just keep landing in dark places
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Chatham Lady - I have been on a cdk 4/6 inhibitor for 2 years now...praying longer. Have you skimmed back through the history in this thread? There is a lot of discussion on SEs you may or may not have. We go into some extensive detail and these might be helpful for you to read so it’s worth going back to read the thread from a year or more. I think the diarrhea, which hits early and can hit hard scares most people. It can be managed through with meds (Imodium and or lomotil or even something as simple as Metamucil....which is nice instead of more drugs!) and after a couple months things settle. However, many of us found dropping the dose was needed because the 150 2x/day was just too much. Having said that, some folks have no issue at all on 150 2x/day. You just need to know that dropping the dose has been proven to be just as efficacious as the high dose, so no worries there. Be aware of the SEs but remember that doesn’t mean you will get them all. We are here for you.
Is this your first treatment for met? Assuming it’s being given with an AI? Are your mets bone only?
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Thx. I have been ready thru earlier posts and found some helpful suggestions. Radiation was my first treatment for Mets in my spine. Started lettrizol last week. MO wanted to wait a week before Verzenio because I had a bad reaction to Arrimidex. Apparently it happens. I’m trying to be optimistic but the balance of posts that scare versus inspire me off this site is daunting
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I can certainly understand. Just because it's oral doesn't make it simple, but its finding the balance. Early on I wasn't sure I could do this either, but through trial and error and help from people on this thread, I have learned how to manage on it and live a pretty "normal" life. I get more tired that I used to, but fatigue comes with all these drugs. I make sure I sleep as long as I want at night. And ret when I need to. I also make sure I keep moving, so I go on walks with my dogs several times a day and walking/hiking with my husband. Also download yoga classes - gentle mostly and restorative, but things to keep moving and building strength. Can't wait to get gardening this Spring. I don't have the world's best appetite, but I am good for eating 3 meals a day and some snacks. I can eat pretty much eat what I feel like eating (not like when I first started), just cautious with things that could cause GI upset. Now that I have had stable disease for 2 years, I pray, pray, pray I can be on this as long as possible because to me everything after this seems daunting!! I will know soon enough. TMs are starting to rise, so not sure what's in store for me in the near future.
Wishing you luck on this. If you have any questions, please ask. Take one day at a time, one step at a time.
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Chatham lady, I think it's the fear of the unknown. Especially since they have to post all the possible side effects. I'm on day 7, so far it's not too bad. Yesterday was the worst with nausea, vomiting, and diarrhea. Feeling better today. For me, I definitely need to take Verzenio with food.
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