Abemaciclib Verzenio for Stage IV
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thanks marcials1 I appreciate any advice, my drs seem to dismiss it as the least of my worries.
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Ok, so I may have jumped the gun a little. My oncologist just called (personally) and wants to MRI the liver for that thickening spot I briefly mentioned. She did say it may be nothing, but wants it done ASAP. Everything else is clear including comparing to my previous scan. So I'll take it. I have had liver mets from the start in 2016. They seem to come and go…
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@intolight I think it's good that your onc called and wants it done right away. Less time to sit around and think about it and worry. Fingers crossed its nothing. Hang in there.
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@intolight I'm with @dulcea thinking getting that MRI done quick is good. It is not comforting at first to think that it is needed so quickly but really not sitting and waiting is best. Please let us know what you find out.
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So I met with the onc team yesterday. All in all I feel better. Just annoyed that the radiologist that they referred me to cancelled on me. They informed me that any neuro specialist is so backed up with brain cancer and MBC to the brain that I am not on their radar. I am thankful for that but just wish they knew that before scheduling me with him. So now I am on hold waiting to hear what the next step is. The skull mets have grown but the tumor markers overall went down. I don't really understand that but I'll accept it and go forward. I anticipate that I'll be having radiation on my skull very soon. Waiting to hear from the other radiologist I went to for hip radiation. He's awesome so I feel confident that will go well. I start the 50mg dose of Verzenio as soon as I get it, which should be tomorrow. And then back to the starting line. Will let you all know how I react to the 50mg and when I go for skull mets radiation. The fun never ends! Oh, and thank you again @going2beatthis for our conversation. You are a bright light and inspiration! Talk to you soon.
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@marcials1 - glad to hear that the visit went well. Keeping you in my thoughts!
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@marcials1 I'm sorry I don't know your full history. Are the skull mets and hip mets the only MBC you have? The positive part (can there be a positive?) is that it's on your skull (bone) and not in your brain. My MO explained that they are not related. I was concerned with a potential skull met leading to my brain but the MO said it "doesn't come down that way". It was an odd way to describe it I think, but she made her point. For me though, there don't appear to be any skull mets. Any type of met sucks though, let's face it.
At least you know what to expect with the radiation since you've been there before. And you have a plan with your Verzenio. Good luck with that and I hope the 50 mg is kinder to you.
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OK. Crazy question. I hate the bubble packs that the Verzenio comes in. I take them out and put them in my weekly pill containers to make sure that I don't forget any. Day 1, day 2 etc. does not help me one bit. At one point, I was writing the days of the week on it but I hate popping those things out! It's so hard and then you get that extra little piece of backing of thick paper that looks like a pill. So now I just do it once every two weeks and all at once. Does anyone have any suggestions to get those things out? I feel like I"m going to break a nail since Verzenio makes my nails so weak.
Any tricks?
Next time I need to order, I will ask them if they come in a bottle. That would be helpful.
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@dulcea - I absolutely hate the excess packaging. When we first started traveling and house hunting, I carried it around (plus my daily/weekly pill box), but it was bulky and frustrating. Now I prepare 4 weeks at a time. I pull the packages apart, then cut away the excess (with scissors) and peel off the cardboard layers, leaving just the blister pack. I take one out of the blister pack for each day, and cut them down further, to leave one in the blister pack for each day (putting both in my pill box). That way, I don't accidentally take two in the morning. Yes, it is a pain in the neck, but it's just once a month, and using the original packaging is a pain, too. I honestly don't know what they're thinking. And, yeah, I feel a little crazy doing it, but it makes my life easier.
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@dulcea I agree with you…I hate the bubble packs. I seem to leave the little white oval papers all over the floor as they drop and I don't see them at first. They really are a pain. Let us know if they come any other way. I prefer to leave the pills in the packs as I can tell if I forget to take the morning one that way. I take a prilosec first thing every morning, then take the Verzenio an hour later but sometimes I forget. I usually miss about one a week.
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Scissors! Why didn't I think about cutting open everything @seeq? I actually use scissors to pop them out! LoL.
When my father was beginning his venture into dementialand, I bought him an automatic pill reminder and dispenser. It can beep and flashes lights for reminders. Smartest thing I ever did because now I have it and love it. I don't forget pills now.
@intolight I was wondering about taking medications with my Zantac. Does it affect them if you take them altogether? No doctor has ever mentioned that to me. I should look into that.
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I too hate the excess packaging and the little pill shaped shreds of paper and foil that come when you push the pill through. First thing I do with mine is rip out all the excess cardboard, etc., throw it out and get to just the blister pack. Then I've got to deal with all the little pieces of paper that come with the pill. I don't have too much trouble remembering or pushing them through, but I can see where it would be easy to have problems with both.
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@threetree - Thank you for the suggestion of only keeping the section that the pills are in. I have always left the entire package together (over 3 years now) and it is a little cumbersome when I am travelling.
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Going2BeatThis - You're very welcome. I haven't traveled with it, but yes, I can see how it would be a real hassle with all the packaging. I don't know why these companies do this sort of thing.
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@dulcea Hi - so my skull mets are in addition to hip, lower back and ribs. So far. I am thankful that they are in the skull not the brain, although one is on the dura layer which freaks me out a little. I'm told not to worry about that. Of course I'm told that by someone who doesn't have a skull metastasis on their dura layer! I am meeting with the radiologist next week and hopefully will have them "blasted" in the very near future. I am going to start my 50mg Verzenio this weekend. I just received it. They are already talking about upping me to 100. I told them "slow down there" I just want to enjoy my low dose without thinking about the 100mg yet. Let's see how it goes before ya throw some new poison my way. I know it is what I need to fight this so I get it, but I just want them to think about being a little more compassionate when they just keep throwing all of this my way. Maybe it's just me - but it seems they are a little poison-happy with all that they want me to take. I'm scheduled for Zometa in a month or so and I am not sure I am going to do it. Any thoughts out there? @going2beatthis I think I saw that you passed on this is that right? Let me know what your thoughts are. I think I am going to likely agree with you. Hope you are doing well! Does anyone have any Memorial Day Weekend plans?
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@going2beatthis @dulcea @seeq @intolight @threetree I cannot agree with you more on the over-kill packaging. First it's just not necessary is it? Do we really need all the cardboard "boxes" full of Verzenio? At least it's not plastic, I'll give them that. But it is really bulky and rediculous. Just put it in a bottle like everyone else. It's not like the little gift packaging makes it feel more special to take! Or if it is going to be in cardboard just package it much smaller & simpler. Just my opinion. And those little white pop out plastic thingys all of the floor. I'm starting to just ignore them.
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@marcials1- yes, I did. Posted 5/20/24 on the Bone Mets thread "I remember having read about bisphosphonates about 12 years ago and that even back then, it was mentioned that over time your bones could become more brittle. After hearing what others have experienced with ONJ and other bone issues and knowing what I do from a long time, I decided not to go on Zometa. My onc finally gave up on asking me about starting it after about 1 1/2 - 2 years into my treatment. She never suggested going on anything else. For me, I am glad I made that decision.'
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@marcials1 I have been on Zometa from the very beginning of my treatments 8 years ago… I get it every three months. I have little problem with it just minor aches for a couple of days. Nothing much and I am so used to it the aches barely register amid other things as Tylenol takes care of it. I have them slow the drip to at least 20 minutes instead of 15 (just ask the dispensing nurse as they don't need extra permission) and if you can take a Claritan the day before and the day of, you may be able to keep the aches minot like me. These hints were given to me when I first started, and I have read them echoed by others many times since I started.
Best of luck! I have been tempted to reduce my Verzenio to 50 too, but I hate to rock the boat again as I am doing so well. I have learned to tolerate and manage the side effects. To me it is worth it so I can watch my grandkids grow up…
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@going2beatthis Thank you for the info! I know it is supposed to strengthen the bones but right now I want to focus on killing the cancer. Then maybe, and that is maybe, I will consider the strengthening. What good will it be to have strong bones if I have to lay in bed for a week or more getting over the treatment itself? Thanks again….
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@going2beatthis We posted at the same time as your post flashed exactly when I posted mine! I do think @marcials1 has to weigh her options with Zometa, and pay close attention. They have been fine with me, but I understand your hesitation. You just need to see the whole spectrum of results before making your decision. Definitely be faithful to go to the dentist every 6 months, and let him/her know you are on Zometa. Also, your onc should be able to check your bones with your scans, but you can get bone density scans too if you are so concerned.
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@intolight Thank you for that info! I saw someone say something about taking Claritin and making the drip over a longer time than 15 minutes. It may have been a post I saw that was yours while I was searching yesterday .I will keep both of those in mind for sure. I also read some horror stories of how it affects some women more than others. One said she was in bed for 8 days. That could very well be me since I am one of those that reacts terrible to almost any medication. And I know what you mean about keeping the higher doses of Verzenio. I likely will up to 100mg when they want me to but am hoping they wait to at least see my numbers at 50mg to do so. I want to see my nieces grow up and just live life as much as I can. If it means some discomfort I can handle that. Oh, and I just saw your message about onc checking bones with scans or getting bone density scans too. Thanks again for your info! I appreciate you all!
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As we all agree the packaging is very cumbersome and the pills hard to get out.
I might be wrong, but imo, it might be done for the following reasons:
- My package is shipped with a 4 week supply. They need to be protected so that the pills do not get crushed in shipment. The hard carboard helps with this.
- There is certain information on the outside part of the section where the pills are which I think is probably required to be there by the FDA.
- As for the the section that breaks off very easily:
a) the "full prescribing Information and Patient Information" is inserted here.
b) the instructions of when and how to take is on the back side of this section.
4. From what I can tell the package width is in order to be able to see all 7 days when you pull out the pills.
Guess Lilly is not going to change the packaging! 😕
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@intolight - I totally agree that @marcials1 "needs to weigh her options and pay close attention." I was only saying what I had personally decided to do and why. I, by no means, am telling her not to go on Zometa. That is a decision she needs to make with her mo.
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@going2beatthis I bet your thoughts are on point with the packaging. And for me the packaging is the least of my worries. But you all made me laugh with your comments and it was nice to laugh for a change!
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@going2beatthis You make some good points. I really don't mind the size…just the difficulty with the bubble pack. I actually like that it is big as it is different from my other meds and very visible which helps me remember. I like the am/pm set-up too so I always know if I missed a pill. Works for me. Anyone else here get it from Fortrea Specialty Mail Pharmacy? I get a text that it is time to reorder, but when I call Fortrea they tell me the text came from Lilly Cares which is their old company and it is too early to reorder. So I have to wait a week and call again. I am just thankful I have an extra two months supply for when it comes late. Why is it so hard?
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@intolight I get my Verzenio from Accredo. A third party pharmacy provider I guess. So far they have been on top of it. I do agree with you on the am/pm set-up. That part is helpful for me.
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I get mine from Fortrea/Eli Lilly also.
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I figured I'd give my two cents about the bone strengthening meds. I have been having the Xgeva injection since last October. I can't say that I have noticed any side effects from it. I started both Faslodex and Xgeva at the same time, a few weeks before Ibrance, and can honestly say that I did not notice any side effects from either. My list of medications that I am allergic and sensitive to is extensive, so for me not to react, it must be fairly mild.
My MO also said that although there haven't been any official studies, Xgeva may also work against the cancer itself as a chemotherapy as well as strengthen bones and slow down bone metastasis. That's why she chose that for me.
I had just dipped my toe into osteopenia by 1/10 of a point prior to MBC but they still let me just take calcium to combat that. However, a fractured rib was my first, and has been my only, symptom of cancer. A week before I was diagnosed with MBC, I was at a follow up breast surgeon appointment and I complained about my painful side thinking something happened to my implant. They poo-pooed me and sent me home. Thankfully I had an MRI for my back the week after which launched me into this mess. The Xgeva healed that rib quickly according to scans. Or that's what I think happened anyway.
I wonder why doctors choose one medication over another. Xgeva is not a bio-whatever but it is a monoclonal antibody. Osteonecrosis of the jaw is a side effect also of about 1% of patients if I remember correctly.
I also have noted that my arthritis /joint pain has been non-existent since I have started on all these medications and can't imagine what is causing that. I'll take it though!
On another side note, does anyone deal with feet issues on verzenio? It might just be my stupid old lady feet but figured I'd ask.
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Dulcea - You are very lucky to not really be having side effects from these drugs. Thanks for telling the rest of us about it, and more power to you!
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@Dulcea - no feet issues here.
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