Abemaciclib Verzenio for Stage IV
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@shanagirl Sorry to hear you had a sleepless night and now a virus. Hoping you get well quickly so you can enjoy Thanksgiving. I should try collagen that way. I know I need more than just in a good shampoo and conditioner.
@marcials1 Praying a change back to 50mg can help with the seizures and still control the cancer. I feel your frustration.
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@intologht - my eyes are very very dry. My ophthalmologist says it is from the aromatase inhibitors. She recommended I use Refesh Relieve (individual vials) as much as I need during the day. Some days I put a drop in every 2 hours. At night she suggested Refresh Celluvisc which is a gel.
Thank you all for telling me headaches are a se of the Verzenio. I have been experiencing them in the last month or so. Don't know why MOs don't tell us. When I mentioned it to my new mo last week, she said she had no idea. I was starting to think that maybe it was from the SRBT treatments I had in July. I am so thankful for this group.
Wishing everyone a Happy Thanksgiving.
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Going2BeatThis - Thanks so much for the info from your ophthalmologist. I too have super dry eyes, and I've been pretty sure it's from the low estrogen. I have some Refresh, but I've found it extremely difficult to put those drops in my eyes! I always miss and get some terrifying feeling when I see the vial come close to my eye. Sometimes I get a drop in my eye, but then in might be 2 or 3? And then I can't get any in the other eye. It's so frustrating. I might try again, after reading what you have to say. The anti-estrogen drugs can cause headaches too, just like the Verzenio.
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@shanagirl I'm so sorry you're going through all this. Today my MO said she is upping my Verzenio to 100 in 4 weeks - just in time for Christmas!! I've been doing fine on the 50 dose and so far my blood counts are okay.
She also wants me to do Zometa. Anyone have any thoughts about this? She said it not only helps the bones but recent studies have shown it can prevent further BC.
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@shanagirl I hope you are feeling better. Did you find out if you have a virus of some kind? Are you still taking the 150 Verzenio? If you are I am amazed! I haven't had my first bloodwork or scans since I started 100 but if not better than 50 mg I am going back to that. I wish I could take collagen for my hair & nails but it makes me sick. All supplements make me sick.
@intolight - thanks. Yeah, the seizures are unnerving. They make me actually think all the side effects from Verzenio are tolerable compared to them. I'll find out next week what my onc wants me to do.
@orknitter - Good luck on the 100 mg Verzenio. I hope that it works for you! I do Zometa every 3 months. I have only had 2 injections so far. Or maybe 3. I can't believe that I cannot even remember! Bad memory is another lovely side effect for me. I fought this one for awhile but gave into it. @threetree and I have had our doubts that it really does anything. We want proof and have received all kinds of information supporting it but still no actual proof that it is working. My onc is like squeezing water out of a stone so I get nothing from her. I just get all my info here. This group is amazing. Also, I think @going2beatthis has opted to not do the Zometa even though it has been prescribed to her. Am I right on that still?
To the group - I on occasion skip a few days of Verzenio just to feel normal. But I have never skipped anti-estrogen (I take Letrozole). Does anyone ever skip their anti-estrogen? Just wondering…..
I hope everyone had a nice Thanksgiving or just an enjoyable day. Take care of yourselves.
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Marcials1 - Your post has reminded me that I have still not received the studies my onc said he would send to me, and that I would share. I've been aware for awhile now, but didn't want to bug him about it with the holidays, etc. I noticed that the last time I saw him, he also did not post comments about my labs in MyChart like he always does either. My next appt with him is also a little farther out than usual, so I have a feeling he might have something going on, so I will wait until that next appointment (Dec 12) to ask him about where the Zometa studies are. I've had 4 infusions now, and I am starting to think that I might "feel" stronger. That is in no way any kind of actual proof of anything. It could just be the PT I'm doing. I'm also supposed to get scans on Dec 9, so maybe they will show something one way or another that I can chalk up to a benefit of Zometa. I will say that over the last year, I did not develop any new fractures (again, we shall see on the 9th), so that is another subjective positive sign re a possible effect from Zometa. The year prior, I was getting all sorts of fractures in ribs, spine, and sternum. Could it be the Zometa that's helped? Who knows? Maybe I've just been "lucky" for awhile.
Re skipping anti-estrogen: I took Letrozole initially, before I was stage 4 and I only took it every other day, because of the side effects. I had also read a few small studies that said it looked like every other day was just as good, but it was no officially accepted sort of thing; I took a risk. Well, I went from stage 3 to stage 4 during that time. Whether it was because I only took the Letrozole every other day, I will never know. Many take it diligently and progress, others skip some and do fine and/or progress, and then there are those who decline altogether, and some of them never have problems again or they too progress, so there is just no way to really know about so much of this. I can't offer any advice in this regard, I can only tell you what happened to me.
I'm also very sorry to hear about the trouble you have with the seizures. I've never heard of that, and to hear that they make the Verzenio side effects seem minimal comparatively, is disheartening for sure. I really hope you get something figured out about those and that your onc can help.
Hope you had a good holiday!
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@marcials1 - Your memory is better than you think. 😀 You are correct about that. I did opt out of taking Zometa. My new MO didn't even mention it to me.
Although I have accidentally missed a dose of letrozole or verzenio, I have not done it intentionally. Taking a short vacation from both in February, made me realize that it was not worth being off of either for even a few days. My system had to get used to the drugs all over again and it was not as willing as the first time…more side effects the 2nd time around.
Hope every who celebrates enjoyed their 🦃 dinner.
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Not tryna make Husband11 wrong, just clarifying.
The regulation regarding the exclusivity period for a new drug in the U.S. allows for a5-year period of market exclusivityfor new drugs upon FDA approval, but this does not mean that generic versions are automatically allowed to enter the market after this period. Here's how it works:Patent Protection: Before the drug is even approved, it can be protected by one or more patents which can last up to 20 years from the date of filing. The drug might still be under patent protection when the exclusivity period ends.Market Exclusivity: Upon FDA approval, a new drug might receive up to5 years of market exclusivityif it is not previously patented. This exclusivity prevents the FDA from approving any generic versions of the drug, even if patent issues are resolved.Pediatric Exclusivity: Companies can also receive an additional6 months of exclusivityfor conducting pediatric studies, which extends both patent life and exclusivity periods.Generic Entry: Once both patent and exclusivity periods have expired (or are successfully challenged in court), generic companies can seek approval to market a generic version of the drug by filing an Abbreviated New Drug Application (ANDA). However, the timing for generic entry can be complex due to the possibility of multiple patents and different types of exclusivity (like orphan drug exclusivity, which can offer 7 years).
The actual time before generics can enter the market can therefore vary significantly, often extending well beyond the initial 5-year exclusivity period due to various legal protections and regulatory considerations.
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threetree - if you get that info from your onc let us know. But if you don't, do not worry, we all have so much to follow up on 24/7! And now that you mention it, I wonder if the Zometa has made me feel stronger also. I have some days, here and there, that I feel pretty decent. I can go for a 2+ mile walk and still have energy and not be in pain. So hmmmmmm you may have something there!
I'm not going to skip Letrozole. I occasionally skip Verzenio if I feel like absolute crap. Usually just for a few days at most. And so far starting back up isn't an issue since it's only those few days. I think like you said we are all so different and our meds all work different for each of us. Generally the same but not 100% that is for sure.
I just had my 1 month onc visit yesterday. My blood counts are holding steady which is a relief. I thought maybe white and red would have gone down with the 100 mg Verzenio. I didn't get my tumor marker results yet. For some reason they are taking few days now instead of the same day. Just another annoyance.
I had another mini seizure on the way to my appointment yesterday. Luckily my husband was driving because I'm not sure if I would have had time to pull over. So called nuerologist today and he cannot see me until March. What a joke. I told the scheduler that apparently I'm not considered an emergency but that the seizures are really scary and if they can get me in sooner to please do so. I am convinced there is a relationship between my upped Verzenio and the seizure meds. On and on and on it goes.
Oh hey - does anyone get hives or a rash on Verzenio and/or Letrozole? Just another joyful experience I have.
going2beatthis - I guess I do still have some memory left! How is everything going with you? I understand from you and others that going off Letrozole and Verzenio for any length of time can be an issue when you start back up. So I'll try hard to not ever go off for more than a few days. Unless I'm suddenly NED and told to. Pretty sure that will not be happening!
I hope you all are enjoying cooler weather, feeling good and trying to get some holiday spirit happening!
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@marcials1 - I've been NED for almost 4 years and was never recommended a treatment break as a result. I did request a dose reduction to 100mg, at that point, which improved my QOL.
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@marcials1 - I agree with seeq. My understanding is that even if you are NEAD, it is the drugs that are keeping you that way. When I was NED for a period, my mo did not suggest a break either.
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@seeq Congrats at being NED for 4 years. Where are your mets do you mind me asking?
@going2beatthis How long were you NED? And please remind me where your mets are if you don't mind telling me.
I was living in a dream world pretending I would some day be off of medications. I knew better but it felt good to have that goal.
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@marcials1 - de novo - liver mets were found first.
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@marcials1 - My mets were initially (2/11/21 PET) found to a small number of lymph nodes (right lower jugular and right hilar), pleural, iliac bones, some other small lytic osseous bones and a lytic frontal calvarial (skull) met.
My second PET was 6/14/21. Resolved were all lymph nodes, and mets to neck, chest, breast, pleural, and bones. No new disease.
NED continued until 2024 when the lesion in my skull bone started to grow. I had it treated in July (5 SBRT sessions). My last PET (11/14/24) still shows SUV uptake to that met. My next Brain MRI and RO visit is not until next month.
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My Mets were de novo in lymph underarm, multiple bones and liver in 2016. Originally went on Ibrance, Femara and zometa. Was NED after 4 months. Have bounced around with different Mets and different treatments since but always kept the Zometa. I am currently NEAD (my oncologist calls it stable) for two years now. I'm on 50 MG Verzenio, faslodex and Zometa.
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@intolight - glad to hear you are NEAD. I see that you changed to Verzenio and Faslodex in April 2022. Have you always been on 50 mg of the Verzenio or did you start higher and have had 2 reductions to get to 50mg? If so, when and why? Also wondering why your mo change you from letrozole to Faslodex?
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him my Lady friends 💕
Im just too sick to do hang out and chat with you guys today. It’s just been a really bad month for me, although yesterday DH and i put the 🌲 tree up and decorated it yesterday. Today I was so sick after being up all night. I Couldn’t move and a lot of pain and a really bad barky I’ll catch up with you all and your posts soon.💕
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@shanagirl - sorry to read that you are going thru such a difficult times. Sending lots of 🙏🙏🙏 that you feel better soon. 🌻🦋💐
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@going2beatthis (This is a little bit complicated so feel free to skip.)
I moved states two years ago and therefore changed oncologist's. During the move and transition I was on Letrozole (Femara) only as I was recovering from extreme pneumonitis which we think was caused by Afinitor. I only missed one infustion of Zometa during the move. Once I finally established a new oncologist, I had one round of chemo due to what we thought was progression, but a better MRI showed it wasn't warranted as what originally thought was progression showed only a spine hemangioma. So we stopped the IV chemo and she switched me to Faslodex, and Verzenio at 200mg twice daily. After three months I was almost too weak to walk so we reduced the Verzenio to 100mg. I was able to tolerate it for almost two years but then started struggling with extreme fatigue again so we reduced me to 50 mg about 4 months ago. I am doing okay on it…not great but definitely better. My first scan after the reduction to 50 showed I am still stable. I'm not sure now that I needed to switch out of Letrozole, but since I had been on it for six years and stopped it for the chemo she thought the change would help. Since I am stable, she was probably right. What I don't know is what will happen next, but I try not to borrow trouble…
@shanagirl I responded to you on another thread, but I am praying you recover and feel better quickly.
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@intolight - thank you for sharing. Do you find that you have less se from faslodex than you did from letrozole? February will be 4 years since I started treatment. Think the cumulative effects are starting to take their toll. More bone and joint pain, more headaches, drier skin.
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@going2beatthis I am not sure whether I have less se from Faslodex or not since I have been taking anti-hormones for over eight years now. My body is pretty beat up. I do believe it is accumulative though, and yes, dry skin which seems to be getting worse, blurry eyesight, bone and joint pain, and dry/brittle thinning hair. I figure I don't have a choice so I just go with it. I am also on oxygen 24/7 because I live at 7000 ft and my body just can't work hard enough to get enough oxygen at this altitude. I am fine a sea-level.
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Shanagirl - Like Intolight, I commented on the other thread, but want to say again how sorry I am that you are going through this right now. With that cough, it could be a virus or something, and should get better in due time. Take care of yourself, enjoy that tree, and get back with us when you feel up to it! Another hug!
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@seeq @goingtobeatthis @intolight Thanks for sharing your mets location information. I'm always learning and processing information. I hope that your next MRI is positive news @goingtobeatthis. My mets are still in ribs, sternum, hip and skull. So far no progression to other locations.
@intolight glad to hear you are stable after 2 years. That is encouraging. And hope the 50mg Verzenio keeps working for you.
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@shanagirl I am thinking about you and hoping that you are feeling better each day. Lots of hugs to you and relax and heal. We'll be here when you're up to chatting.
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DW has been on 150mg Verzenio for 1.5 years with stable scans
How long does it work usually? Can it work for 5+/~10+ years
Are there drugs apart from Ibrance and Kisqali for MBC?
Hoping for the best!
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Hi Andy280,
I don't know if you have had any response to your questions/comments. Everyone is different in their response to MBC treatments and medications. The fact that your DW has been on Verzenio 150 for over a year is a stunner to me. I can only handle 100 and had to work my way up to it after being on 50 for about 6 months. I know there are people on this thread who have been on treatment for over 8 years. I am wishing you and DW the best.
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Hi Andy.
Sorry if we were sluggish to respond to your questions. I have been on Verzenio for 2 1/2 years now. I was on 150mg for 4 months, then 100mg for almost two years. I am now on 50mg for the past 4 months. I am currently stable. I was on Ibrance for four years and did well, with several drugs between the Ibrance and now Verzenio. There are lots of drugs for MBC right now but it depends on your hormone status as to which ones are recommended for your DW. Total I have been on oral chemo for 8 1/2 years. Everyone responds differently. I am impressed your DW can handle the 150 dosage for so long. I reduced my dosage because of extreme weakness. For me, part of that is also the length of time I have been on these drugs as it takes its toll. Take care and let your DW we love and care.
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Andy - I want to underscore what Intolight has said. There are many drugs for MBC, and it just depends on your wife's individual situation. Most are on a variety of these drugs over time. One stops working, so another one is started. I have been on Verzenio since May of 2023. I started at 150mg twice a day, and was reduced to 100mg twice a day, after about 6 mos, due to extreme weakness and fatigue. I've been OK, but not without side effects, since then. I've been in this stage 4 situation for almost two years now (began Jan 2023), and am on what they call my "first line" of treatment. For me that is Verzenio, Faslodex, and Zometa. So far, I've been relatively OK and stable, and just take it one day at a time. I have no idea how long I will be able to deal with all of this, before things become impossible, but as you can see with Intolight's situation, some can go on for a very long time. Wishing you and your wife all the best!
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Thanks a lot marcials1, intolight, threetree. Appreciate your effort and time in answering.
DW is 52 and in reasonably good physical condition, so is able to tolerate 150mg, though does drop to 100 for some weeks when traveling etc.
Amazing to see intolight having 8+ years on oral chemo. That is great news. DW's doctor did say that her longest MBC patient was 15 years and going. Ibrance seems to be the magic drug on which people have stayed for years.
Hoping everyone has similar outcomes and make many cherished memories
My only concern is that since Ibrance and Kisqali did not work well due to side effects, after Verzenio stops working there may not be other effective oral chemos left.
Verzenio started in 2017, so 7 years is perhaps longest someone has been onto it, unless there are patients continuing from the Monarch trial.
Ideally, it would be nice to know what the next drug could be, and what side effects it has.
Though I do understand everyone is different, and in the next few years new drugs could come, perhaps using AI technology.
Wishing everyone happy holidays and Merry Christmas!
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Thank you, Andy, and Merry Christmas to you and your wife too!
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