Abemaciclib Verzenio for Stage IV
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@intolight My GP switched me from Loratadine (generic for Claratin), and she put me on Singulair once every evening. It’s made the world of difference for me with cough and constant runny nose and sinus headaches. I thought it. Was a summer cold or side effects from Verzenio and other treatments but it seems to have been all allergies 🤧 and I can finally go all day without a constant drippy nose and cough. Talk to your GP
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Hi Ladies. Most of you are on another thread with me, but I thought I needed to post this here too since you all know.
I had an MRI scan taken at 10:00 this morning and the results are now in. (They are quick here!) Of course I am not a doctor and don't understand most of it, but there is a little bit in the summary I understand. In summary, there are multiple lesions on both sides of the liver--this we already knew but they are clearly seen on this scan. There are also three lesions on my spine: T11, T12 and a new one on T1. There is a lesion on the pancreatic head (the reason for this scan) that is unchanged from two months ago. So, yes there is some growth. My oncologist has not called yet but I know she will in a day or two. I am relieved that it does not clearly say pancreatic cancer which is my greatest fear, but we shall see. Other than the spine, the lesions have not returned to my other bones which were the sites of my original cancer. I have had liver involvement the entire eight years so this is no surprise either.
These results for me are just another entry into what I have been going through these past eight years. Every few months I get another scan and receive more mixed results we treat as needed. It is part of managing my cancer. My current treatment of Verzenio is my fifth line of treatment. I have no idea whether I will maintain or change. We all know how this works. I am getting a bit fatigued with constant side effects no matter what med.
I am okay. It provides an explanation as to some of why I am struggling now. I know God is walking with me on this journey and I trust Him. I shall be patient to see whatever treatments are in my future. I love you all and am blessed to have you in my life. Chris3 -
@intolight - Chris, thank you for sharing. I know you have been struggling bit, so I suppose the explanation of why that is helps with the mental side of dealing with cancer. I am amazed that you got 2 years out of Verzenio, cycling back to a second CDK 4/6 inhibitor after other treatments. I hope the lesion on the pancreas is not affecting its function and responds to treatment - whatever that might be.
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@intolight thank you for sharing all of that with us. It helps us and maybe it helps you to share it.
8 years! A blessing and a curse at the same time. Side effects suck!
I hope whatever your next journey is will be the best one yet. Hang in there kiddo. We are all with you and behind you.
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@intolight Thank you for sharing Chris. Eight years is quite a journey and gives us all hope. So the treatment is a blessing and a curse as @dulcea said. I hope you find out soon what your next journey entails and eases the struggle. We are here for you and sending you lots of love and a hugs. Marcia
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Hi All.
The PA that works with my oncologist called last night and discussed my scan results. She said they discussed my case with the tumor board at the hospital and they dug deeper into the scan for more clarity. They are not concerned with my liver as that is not new and my blood results show no concerning symptoms or function issues. She then said the thing on my Pancreas is a lipoma; a fatty mass that can occur anywhere in the body. (It is possible some of this is going on in my liver?) This made me cry with relief as I was so concerned about pancreatic cancer. Even as I type this I have tears...this is a first for me as I don't cry easily! The two lesions on my spine are also not new; on the T11 and T12 (mid-back.) In the past they were hemangiomas which are not concerning either although I have been having pain for some time with bending, etc. There is a new something on a different vertebrate (T1) and she said they didn't discuss that as they were concerned with the other stuff. She said she would ask about that one.
So in other words I am mostly stable and she doesn't have any increased concerns. I go through this emotional roller coaster every time I get scans (every three months) fearing one of these times it will be worse. Of course I read the portal with only partial understanding and also fear the worse. Such is our life that the world doesn't understand. I am thankful to have you all here that do understand. I am praying for a good week for you all.
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First time posting here - after reading tons of prior comments about side effects of Versenio. I have been relieved to read that others have struggled with it too, and appreciate the suggestions for coping with it (I'll be trying some of those ideas)
I (one of the "elderly" category") am 8 years out from initial diagnosis, surgery, chemo, radiation; then Prolia, and Zometa 5 months ago, etc. Daily aromatase inhibitor continuously since completion of initial treatment sequence 8 years ago.
A few months ago my CA 27.29 levels began to rise above normal range and I began Versenio at 150mg. It knocked the crap out of me, severe D, nausea, loss of appetite, so, after a month lowered dose to 100mg, but 2 weeks into that things were still getting worse (lost 7 pounds over 7 weeks - and looked and felt dreadful). My oncologist agreed i should go off Versenio for a month, to regain health/weight. i am about to start again on a lower dose (50mg) 2x daily, and at least feel i have some better ideas for coping with it.
Good to know this site is here for encouragement and suggestions.
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@intolight Great news and Congrats! I am wondering what they call a QOL when you are stage IV. I guess this is what it is: stable condition!
Enjoy your Labor day holidays. We are in a new universe, very different from the external. Learning to live “normal” life0 -
Intolight - So very happy to read about your good news - congratulations! It really is an awful emotional rollercoaster we ride with no choice whatsoever. I am so glad that you can now breathe easy for another good while.
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@intolight - phew! That sounds like a big relief. It's nice to know it's already been reviewed by a tumor board, too - multiple sets of eyes and minds on it.
@hopeful4all - welcome. I've been on Verzenio for 4 years. I found the first 3-4 months at 150mg to be the worst, then my body adjusted to it somewhat. At about 8 mos, I reduced to 100mg, and I'm still at that dosage. There are three CDK 4/6 inhibitors and they each have their own (lovely) set of SEs. If the Verzenio is too hard on you, maybe one of the other ones will be easier.
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@intolight That is good news. Glad to hear and relieved for you! Mostly stable as you said is what we are lucky to hear. I am scheduled for my 3 month scans Oct 1 and although I try not to go through the dread it is there looming all the time. And the emotional roller coaster goes on.
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@hopeful4all Not happy you're here because none of us want to be….but glad you found us and I agree the comments and stories and advice found here is so helpful! Congrats on 8 years out from original diagnosis! I also started on 150mg of Verzenio and it kicked my butt bad too. I have been on 50mg for about 3 months and am doing fine so far. I have been having headaches though recently so that may be my only side effect. My numbers and scans have remained the same for one round of follow ups and hoping it stays that way. My oncologist wants me to up to 100 and I'm willing to try but not looking forward to it. And it may not happen because of my seizure medications may not tolerate it. So I go back & forth with thinking I need the 100 to fight the cancer but then knowing my tolerance may not allow it and I'll feel like crap again. I hope the 50 works for you - keep us posted.
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Hello all - I think I've asked this question before so I apologize for asking again - how often do any of you take a break from Verzenio and for how long? I went off for 3 days a month or so ago and headaches subsided. Now they are back worse and I'm thinking of taking a few days off. Any thoughts?
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@marcials1 Why does your onc want you to go back to 100mg if you are stable on 50mg? I have heard conflicting reports that the lower dosage can work fine if a higher dose worked. At least I hope so since I am now on 50mg. We shall see! I too get headaches even now. My latest scan showed no lesions in my brain or blood issues, so it is either a SE, or a need for more hydration. I can't answer your question as to how often I take a break as I don't plan it. For me, I skip a dose if I am feeling particularly rotten and need to feel better for some reason. I don't recommend it of course, but it is your body and your life. Do whatever you need to make you happy.
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@intolight I have heard and read the same thing - that efficacy of lower dose is the same - it’s all what your body can handle. So PA told me I’d stay on 50 but then onc came in and she told me I should ho on 100, and said if she was me she would go on 100. What is that supposed to mean!? I sm liking her kess and less and need to do some more research. I will make my decision after next scans and blood work numbers. And my seizure status. You are right on the answer to my question it is most definitely an individual decision on taking a break from Verzenio. I was just curious….I may take a break tomorrow because my head is throbbing. Thanks for your input as always!
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I'm encouraged by your post. I was on Verzenio 150mg + Arimidex for one month. The side effects were intolerable. I figured, "Oh, well, gotta die of something," but maybe I can get down to 50mg and do my best relative to nutrition, exercise, etc. Thanks for your post.
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@libelfreezone Perhaps drop to 100 mg first. I did that and it made a huge difference at the time. This is two years later and I am just now dropped to 50 mg. Good luck!
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This is the best thing I've found for the hot flashes and headaches I get from Arimidex.
https://tinyurl.com/ColdCap
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@libelfreezone - I understand what you're saying about how hard Verzenio is, especially in the beginning. I was too scared to request a dose reduction in the early days, and the first few months were very hard - I didn't do much besides sleep, and I had to force myself to eat a few bites at mealtime. After 3-4 months, I did see real improvement, but not enough to keep me from requesting a dose reduction after I reached NED at 7 1/2 mos. The drop to 100mg made a great improvement in the GI issues, and had the added bonus of extra energy, and some hair regrowth (I'd had serious thinning.)
I understand their (Lilly) studies show equal efficacy at 150mg and 100mg; I'm not 100% sure that it carries down to the lowest dose. Maybe someone more familiar with the studies can chime in.
ETA - I know all drug affect people differently- this was just my story.
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My MO tried to find charts with comparison of efficacy of 50 mg with 100 &150but to no avail. Not to say that the data doesn’t exist though.
In any case, my love affair with Verzenio is officially over. Liver enzymes skyrocketed again (100 mg dose) , my MO thinks that it is Verzenio and mentioned a possibility of moving to another CDk4/6 … but a big question is what really drives the jump. Drug toxicity or progression. More investigation is in order.
Ugh… A but unexpected, and very, very disappointing; I was feeling really good lately… but such is life in cancer land I guess.1 -
@lacombattante I see my MO in a month and will ask her if she has any information on the 50 mg dosage. Sorry it is not sooner. I know you will be on something else by then but you got me curious. She told me she was more concerned with my QOL at the time of my dosage reduction. I know also that Faslodex sometimes does the heavy work so I have that working for me at the same time. I will try to remember to message you if I get good information just for fyi.
I am not feeling all that much better yet, but I did have a cold and so I am recovering from that. I do know I want to do more so that is a win as before I just wanted to stay home.
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@intolight , a few words about my MO style… She is extremely careful to not raise hopes in her patients. Actually, so much so sometimes , that I considered changing to another doctor.
My understanding is that 50 mg does work, however there is a difference between efficacy of a dose and equal efficacy with higher doses. My MO sited a presentation at one of the global cancer symposiums where it was reported by clinical researchers that 100 mg is shown to be “non-inferior’ to 150 mg dose. Knowing her, until she gets a clear statement from clinical researchers that 50 mg is ‘non- inferior’ , she would be careful in her communication.
I must say that I totally share your MO approach that QoL is important. Here is hoping it works and continues to work for you for a long time.0 -
I see my MO in about a month also and I'm going to try to get a clear answer on the 150 - 100 - 50 mg efficacy once and for all. Hope everyone in this group is doing as well as can be expected or better. It's a crazy cancer world we live in.
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I had my shots day yesterday and was hurting before I even made it to lunch and home. Arghh! Still hurting today of course but at least today I plan on being in all day. Such is our life!
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@intolight Hope you are up & about and feeling better!
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@marcials1 Thank you. I still hurt today, but am able to get around a bit. One day at a time! My DH is trying to deep clean the living room…badly needed…so I am trying to help a little. I always feel better when the house is clean!
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Good for you and what a good hubby! I always feel better when everything is clean too! Makes my napping much more enjoyable!
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Hi All!
I saw my MO today and her opinion is that it is Verzenio toxicity that drives enzymes values up. She wants to try ribociclib instead. My ECG is OK, so once liver enzymes go down, hopefully in a week or so now, (we continue to test), I will give ribociclib a go.
Liver toxicity remains a concern, of course.
I will be starting with a reduced dose, and hope for the best. What else 😊Wishing everyone a wonderful day.
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@lacombattante I hope that this change to ribociclib works for you. This is a generic name for Kisqali right? Please keep us posted.
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