Abemaciclib Verzenio for Stage IV
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Hi @marcials1 , thank you and yes, I will be sharing updates. Indeed, ribociclib is a generic name for kisqali. My MO would prefer me to stay on Verzenio, but my liver, clearly, thinks differently 🤨
Here is hoping change to Kisqali will do the trick.1 -
Hoping it works for you! And hoping you enjoy your weekend.
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@lacombattante Hoping the change in meds helps.
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Hello - I wanted to say hello and thank you all for your posts here and everywhere. This is the first time I am posting. I have been on verzenio (150 2x/day) and anastrozole for 7 months now for bone mets. Per CT / MRI / blood markers, everything is stable and lots of sclerosis happening so I am grateful :) My question is verzenio related. I had the expected side effects for the first month or so and then they subsided. I attributed this to some diet changes ie: Nothing really difficult to digest. Plant based with some fish. No dairy. Now all of a sudden I am dealing with daily bouts of nearly constant gas and bloating. I changed a few of my supplements around and started a high dose pro-biotic recently, so I figured these new side effects could be from that - so - I cut them out completely for the last few days and am still experiencing gas / bloating. Gas X does nothing. No need for immodium because it isn't "D". Anyone experience this with Verzenio? Gas / bloating / pain only but after a few months of treatment with V? Is this stuff cumulative in our systems? I have my first PET in December and was hoping to stay on the full dose until at least those results come in, but man I can't even leave the house right now! Thanks in advance for thoughts from this amazing group :)
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@iacmelis11 Hello, and welcome to our little corner of the world. Sorry you have to be here… I do have some of your SEs—gas/bloating/pain. I was told it was cumulative and I have been on Verzenio/Faslodex for two years now. I started at 150mg, dropped to 100mg after only a few months, and have been on 50mg for two months now. I have good stable results so far. I will have my first scan at 50mg next month so we will see if it is still effective. I dropped the dosage because the SEs were too bad and I wanted a little of my life back (i.e. I wanted to leave the house!) My onc does tell me to avoid supplements except for the probiotic. I have had diarrhea on and off for at least two years. I am not as careful as you with my diet although I do try to eat healthy. Hope this helps.
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Thank you @intolight ! It's really helpful to hear all of this. I will stay off the supplements for a bit and see what happens. The dose reduction makes me nervous, but I have seen a few of you folks on here who have taken the reduction and are doing fine so that helps! I have a big concert next week with my 14 year old daughter (Taylor Swift) so realllly trying to get to a good place with all of this before that haha! Thanks again!
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@iacmelis11 Wow, my granddaughter would love to attend a Taylor Swift concert! She is nine. She and her mother live with us so I get to see her daily, and like the rest of the world is crazy about Taylor Swift. Good luck!
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@iacmelis11 Hi and welcome to the group. As intolight said we are not happy to have to be here and not happy that you have join but it is a really inspiring and extremely helpful group to belong to! So if we have to be on this journey, then together is better. I am so amazed when I hear of women being able to handle the 150 mg. Good for you since it is supposed to beat this down. However, I don't know if you have read that the 100 and 50 are supposed to have same efficacy. I still haven't received a really clear answer from my onc if that is really true. I was on 150 for only about a week and got knocked down to 50 for 5 months and now going on 100 in about a week. Hoping I can handle it. My markers and scans show mets not growing but also not shrinking. So hopefully this 100 will kick into gear. About your side effects, I think what you are saying is somewhat typical. I had almost 0 side effects on 50 but then suddenly after 4months my nails started breaking and hair started thinning. Bouts of bad headaches, fatigue and achy. I also had that really pleasant side effect you are experiencing. But it went away after about a week. And it comes and goes. I cannot take any supplements at all. I get super nauseas and terrible headaches. I try to eat clean but I end up having pizza occasionally and probably too many carbs (toast & cereal). I wonder if you have to give the adjusted diet of no supplements a little more time? Let us know how you are doing. Oh and hope you enjoy Taylor Swift! My sister is taking her teenage daughter to the show next week!
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@marcials1 jist read an article on the dose reduction. Statistically if you cannot handle clinical dosage it’s better to be on the reduced dose than to stop treatment and wait for another meds to kick in. It doesn’t affect treatment efficacy at all. So as long as you can find a dose that is best tolerated you are better off than if you drop it due to unbearable SE.
Good luck
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@lacombattante it worked for me. I was “promoted” to stage IV after 16 years of NED in May of this year. The same ILC as the original one. Mets in liver, stomach, bones. Started Kisqali and Letrozole in June/July. In August no mets in my stomach and significant reduction of my liver met (from 32x16 mm to 13x10mm). Unfortunately I developed an unbearable allergic reaction to this combo and had to change Letrozole (as prime suspect) to Aromasin. My next CT is in November.
Both Ribociclib and Abemaciclib are known for liver toxicity. Hopefully this one will be easier on you. It’s not as toxic to your liver as Abemaciclib.
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Thanks @laguna24 I still don't understand if the efficacy is the same at 50 as 150 then why do 150? I just am not getting it! My onc said to me "if I were you I'd want to be on the 100 instead of the 50" right after her PA told me that going to 100 will not make any difference. I am confused! But I am going to try the 100 and see if tumors shrink at all compared to remaining the same month after month.
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@marcials1 There is clinical dose and maintenance dose. Statistics show that the dose reduction doesn’t influence OS. I’ve heard some doctors order this testing. Will ask mine.
https://divitum.com/https://www.researchgate.net/publication/369811698_Abstract_971_Thymidine_Kinase_activity_-_A_liquid_biomarker_reflecting_proliferation_rate_and_treatment_efficacy_in_solid_tumors_provides_unique_guidance_in_oncology_trials_and_drug_development
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Here is the explanation:
DiviTum ®
TKa is a blood-based biomarker test that monitors and predicts treatment response in hormone receptor-positive metastatic breast cancer. The test measures thymidine kinase activity (TKa) which reflects cell proliferation.
So, the test measures hormone receptor-positive response. If that is HER2+ then it won't work for everyone. But it also said TK reception. I respond well to TK inhibitors (i.e. Verzenio, Ibrance). Interesting test. I do not know cancer research—I just know if a med works on me or not. Like I said, I will know next month how I am doing on 50mg. Maintenance works for mw as I have been stable on Verzenio for two years.
I am leaving soon to get my Faslodex shots and Zometa infusion. Yes, I do them on the same day as I know I tolerate Zometa well. If I am going to feel poorly, let's do it and get it over with. Have a good day everyone.
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stopping in to say Hi to my Verzenio sisters. And. Welcome to newbies I haven’t yet met.
@intolight , hi there girl, I see you all the time at Mel’s living room. So I’m always happy to see a familiar face here.
I had So I’ve been on the lower dose of Verzenio since the. Spring and improved quite a bit with the big D thing. Just noticing that lately the last 2 months following the Fasoldex & Xgeva shots I’ve noticed several days during the week, the D and cramping comes back for a few hours during he day. I’ve been back to taking Imodium some days. I had been reduced from 150 mg twice a. Day10 100mgs 2. X day.
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@intolight @laguna24 Thanks for info. I called Verzenio directly hoping to hear it direct from the horse's mouth regarding efficacy but they could not give me a really clear answer. Basically, as I believe you told me, you want to be on the highest one that your body can tolerate. So no, 50 is not the same nor as effective as 150. But 50 is better than 0. I asked them a few other questions they would not answer because my oncologist needs to answer. If only she would listen and answer. Considering finding a new oncologist. I hate to start all over but it's important to have someone with a big hand in your health actually on your side.
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@marcials1 "I hate to start all over but it's important to have someone with a big hand in your health actually on your side." -
I couldn't agree more. That is exactly why I am more than likely going to change my oncologist after 3 2/3 years.
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@going2beatthis Good to hear from you. How are you doing? It's going to be somewhat of a hassle to find another oncologist at the cancer center I go to, but I feel it coming. We shouldn't have to do it. I understand they are only human but they chose to treat people; you'd think they could be more compassionate and helpful at the very least. I feel like my oncologist has issues of her own; not sure what they are and do not need to know. But something is going on there.
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@marcials1 What a bummer that you have to change oncologists. That is the worse! It was a struggle for me to change when I moved states two years ago. I wasn't able to shop around when we got here as I was already off treatments for two months and didn't want to postpone any longer. Fortunately the oncologist who took me was in agreement with the one I had to leave so I kept her. She has done fine although I actually prefer her PA. I cried when I left my last one because I loved her work so much!
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@intolight I do like a few of the PAs that I have met with and prefer them over the oncologist. The cancer center I go to is big and I don't know if the PA's work for different oncologists. It's going to be a hassle to change but I'll do it. I think I'm going to wait just a bit because I have a number of appointments scheduled right now. When things slow up I'll do it. Glad you found one that works for you!
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Well, I guess it's time I join this club! I have what's called occult breast cancer meaning they found mets in my lymph nodes but not in my breast - not for lack of trying after lots of scans and biopsies. I had DCIS in 2015, lumpectomy, radiation, and 5 years of hormone therapy. This round was discovered on a routine mammogram when I think the tech noticed something in my lymph nodes and did extra pictures. The plan as of right now is 3-6 months of letrozole and Verzenio, surgery for at least the lymph nodes, radiation, and back on meds. I had no problems with exemestane before so don't anticipate much with letrozole, but Verzenio has me a bit freaked out! I have been prescribed 2 meds for nausea and was told to get some Imodium. I work from home so that shouldn't be a problem.
Thanks for listening! It's great to have others with experience.
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@orknitter Welcome to the club although I know it is sad to have to be included. I am an occult BC patient also…after 8 1/2 years they have never found a tumor in either breast. I was Stage IV de novo, from the beginning of my diagnosis. What dosage of Verzenio have they started you on? The 150 mg? That is typical. If your side effects are too strong, ask to be reduced to 100 mg—it is more tolerable. I was on 100 mg successfully for two years but have recently been reduced to 50 mg at my own request to improve my QOL. I get my first scan since reduction next month so we will see how successful it still is for me. My nausea has been minimal and my diarrhea mostly controllable on the 100 mg although not comfortable. I asked for a reduction because of the fatigue. After so many years on these drugs my body is tiring out. Take care. Let us know how you do!
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@intolight Thanks for the warm welcome. They are starting me on 50 mg for a month, then 100 then 150. I'm fortunate that I love my oncologist and everyone in her office, and I trust her suggestions. It's great to "know" someone else with occult BC. It's so rare that it's hard to find any literature on how it's treated. How long will you stay on Verzenio?
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@orknitter I will stay on Verzenio until it stops working. Then I will switch to something else. Verzenio is my fifth oral cancer med since I started. I get quarterly scans to determine any cancer progression. If there is none, or it is very minor, I stay on Verzenio. So far I have been stable on Verzenio after two years.
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Welcome to the club @orknitter ! I know we don't want to be here as @intolight said but it is a great group of women with lots of helpful tips and information. I am on Letrozole and Verzenio also. Both for as far into the future as I can see, unless something changes for the better or worse. I have headaches on & off and some body aches and fatigue and not sure which of those meds it is from or maybe from both. None of it is bad though and I feel generally fine. I started on 150mg Verzenio but got knocked back to 50mg after just 1 week. Been on that for 5months. My body was not happy with 150. I love that you are being started on 50 and working up. That makes so much more sense and many woman here have been wondering why oncologists don't do that more often. They seem to like to start us out on the highest, see what we can tolerate and drop us down if we cannot take it. I am going up to 100mg in a few days. Good luck and hoping it all works for you! Keep us informed.
Intolight - please let us know what your scans show now that you have been on the 50 mg. I felt it was very tolerable and wish I could stay on it. Stable for the 5 months.
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This is such a great group thank you for all of your responses above. I have another question! I am now experiencing heartburn and dizziness periodically. Meanwhile the bone pain I had in my lower back / hip is gone! I have bloodwork tomorrow and an MRI Friday (MRI is follow up from neck surgery in Jan due to fracture of vertebrae - aka how we found this nonsense) so hoping both show all good things, but again, I am so confused about what is what when it comes to symptoms. Is it anastrozole? is it verzenio? Is it supplements? Fun little games I get to play now (not really haha). Just curious on others experiences around possible heartburn / dizziness with Verzenio. I am on full dose (150 2x daily) for 8 months now. Thank you!
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@iacmelis11 I am on Famotidine (Pepsid AC) twice a day for heartburn as per my onc recommendation. It helps with a dual function: heartburn and allergic reaction. And I also changed my diet to a high pH. No sour food, like tomatoes, citrus etc. You can find a list online. Just search for high pH food. Make sure you eat protein before taking your meds to avoid dizziness. Best wishes.
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@iacmelis11 I have occassional heartburn and I have minor dizziness also. There doesn't seem to be anything in particular that triggers either but they do not tend to last long at all. There are so many different side effects we all deal with. I tend to think that my side effects (including headaches) are from Verzenio more than letrozole because I was on letrozole before Verzenio with 0 side effects. But I am not certain; they could have been delayed side effects. Other than the dizziness and heartburn, how are you tolerating 150 Verzenio? Great to hear your lower back and hip pain is gone! Everything ok with bloodwork and MRI?
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The Verzenio causes lightheadedness, weird muscle/body aches/sensations, heartburn/digestive problems, and extreme fatigue. I went from 150 to 100 and still have problems, but less so. I never had "the big D" from Verzenio, but I do get heartburn and just a lot of generalized digestive upset, pain, etc. What has helped me most is daily fresh organic sauerkraut (the refrigerator, not canned kind), plain probiotic Greek yogurt with a banana, and more recently I've added a tsp of Manuka honey with 1/4 tsp of black seed (nigella sativa) twice a day, i.e. after breakfast and dinner. Sometimes I'll have as many as 2 bananas a day, as they really help with the digestive stuff. While the sauerkraut and yogurt I think saved me from bad D, the recent addition of honey and black seed mixture has helped a lot with the remaining heartburn and upset although I still have occasional problems - nothing resolves things completely. I'd rather do home remedies before I go out and buy all those chemical over the counter things like omeprazole, gas-x, and tums, etc. I've used some of those in a real pinch, but I'm trying to find less toxic ways of managing things if I can.
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Yes @laguna24 thank you for the diet info. I actually had a really bad heartburn attack last night in bed. I also had a lot of garlic with dinner. I am going to look into avoiding those foods as much as possible, especially at dinner. @marcials1 My dizziness is the same as yours and the heartburn is new. I never had side effects from anastrozole either. I was on it for 2 years after I had a hysterectomy and ooph in 2020 with no side effects. Dr google says anastrozole could cause heartburn though and I do take that one (and verzenio dose 2) before bed. Our timelines seem similar @marcials1. I was originally dx in 2012 stage 2a, had the mastectomy, chemo, rads - even had hysterectomy and ooph in 2020 then did 2 years of anastrozole. Made the silly mistake to try estradiol patch for a few months early 2023 due to menopause symptoms and here I am again with bone mets in Dec 2023. Anyways, I will see with onc says today. Appt in in a few hours. MRI is this coming Friday. Hoping for all things sclerotic :) Thanks y'all for listening!
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