Abemaciclib Verzenio for Stage IV

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  • nnc
    nnc Member Posts: 43
    edited December 2021

    Bad news - results of biopsy of breast mass shows I am now estrogen receptor negative. So waiting for herceptin results. So breast cancer seems to have mutated after many years of anti estrogen treatment. Still have metastasis to axilla, pelvis, and mass in lymph node in pectoral area. Will wait and see what is in store re change of treatment.

  • seeq
    seeq Member Posts: 1,172
    edited December 2021

    nnc - I am so sorry about your progression and ER flip. Do you think the flip is only in that tumor? I really don't know how that works. When do you meet with your MO to discuss treatment options? Sending gentle hugs your way.

  • nnc
    nnc Member Posts: 43
    edited December 2021

    SeeQ -Yes as I understand it you can have some areas that are still estrogen positive and other areas that mutate or become resistant to anti estrogen treatment. It is strange because the Verzenio has reduced the size of metastatic sites in bone, and clavicle and axillary lymph node masses (although they haven't disappeared) and Verzenio is used for estrogen positive tumours. Depending on the pathology results they will treat accordingly. so I am waiting for Herceptin test. If it is negative then I would be triple negative - which is worrisome as it can be a more aggressive tumour. I don't want to get ahead of myself until I have all the results. I asked my MO to perhaps biopsy the mass in axilla. 2 years ago I had a biopsy clavicular mass and it was estrogen positive. So who knows unless you have a biopsy. My neutrophils keep going below acceptable range so I keep having to take a break from Verzenio. So I was possibly going to change to Xeloda or back to Taxol. I want to stay on Verzenio as long as possible as quality of life is very good. Taxol really is much more difficult for me.

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited January 2022

    Hi All, joining the club as of today. A little nervous but hoping for good results on new liver mets.

  • lvla
    lvla Member Posts: 20
    edited January 2022

    Hi, everyone.

    For Verzenio, is it better to take before or after a meal, or with food?

    Can it be taken at the same time as the AI (Letrozole), or separately?

    I searched online that Letrozole is enteric coated, which means it's better without food?

    Thanks!

  • star2017
    star2017 Member Posts: 370
    edited January 2022

    I think generally i was better off taking Verzenio separate from food, but there were no guarantees.

  • husband11
    husband11 Member Posts: 1,287
    edited January 2022

    From the patient monograph for Verzenio:

    - (lilly.com)

    9.3 Drug-Food Interactions Abemaciclib may be taken with or without food. A food effect study demonstrated a 26% increase in Cmax of abemaciclib and its active metabolites following a high fat breakfast compared with fasted dosing (see ACTION AND CLINICAL PHARMACOLOGY). Although significant, this increase is within observed variability. Grapefruit, grapefruit juice, and products containing grapefruit extract may increase abemaciclib plasma concentrations and should be avoided (see DOSAGE AND ADMINISTRATION, and ACTION AND CLINICAL PHARMACOLOGY).

  • lvla
    lvla Member Posts: 20
    edited January 2022

    Thanks star2017 and Husband11.

    Is it better to have increased AUC and Cmax for the drug

    "A high-fat, high-calorie meal (approximately 800 to 1000 calories with 150 calories from protein, 250 calories from carbohydrate, and 500 to 600 calories from fat) administered to healthy subjects increased the AUC of abemaciclib plus its active metabolites by 9% and increased Cmax by 26%. "

  • husband11
    husband11 Member Posts: 1,287
    edited January 2022

    Is it better to have increased AUC and Cmax for the drug?

    I am not a physician or pharmacist, so this is just my opinion.

    If you increase or decease either, it may be similar to increasing or decreasing the dosage. To what end effect? Hard to say. Is more drug more effective? Hard to say. Is more drug associated with higher side effects such as suppression of blood counts and GI issues, perhaps. So, it's a trade off.

    What would perhaps be wise, would be to be consistant, so that if you are suffering side effects, you can adjust the dosage, and only be playing with one variable. But if it's well tolerated by you, the small change in AUC and Cmax might not amount to anything.

  • mkestrel
    mkestrel Member Posts: 180
    edited January 2022

    Well verzenio seems to have helped stop cancer spreading the past few months but now I have an impossible $3300 copay for two weeks of medicine. I got the savings card from the manufacturer but apparently something won't go through or doesn't cover it there's some other card I'm supposed to get? I don't understand. On hold forever, never answered, not calling me back etc. Called pharmacy several times. Plus I have to keep trying to work full time just to keep this lousy high deductible insurance. I can't pay that all at once. I'm exhausted and can't deal with it. How about not price gouging?

  • emac877
    emac877 Member Posts: 688
    edited January 2022

    MKestrel - Holy smokes! That's just wrong! I don't know how they expect anyone to afford these meds short of being independently wealthy and even then, you wouldn't be wealthy long! I had a hard time initially with Lilly Cares. I qualified my first year for the program because my insurance wouldn't cover it. It was a big fight though because my MO used it as a first line treatment instead of Ibrance which is why my insurance was being such a brat. Long story short, my insurance does cover it but I also have a payment card through Lilly. My MO's office people helped get this process set up. That's their job. It shouldn't be falling on you to go back and forth with the insurance and Lilly. Can someone at your MO's office help you with this? Some offices may have samples of the Verzenio they can give you while the process is sorted out. You might check into that option too.

  • emac877
    emac877 Member Posts: 688
    edited January 2022

    MKestrel - also try this link. It's the savings card for Verzenio. It only works if you have non-government insurance. So your coverage can't be Medicare or gap insurance. They will ask you what kind of breast cancer you have and ask you whether or not you are on Medicare when you sign up. Anyway, it's worth checking out. I have insurance through my employer. Last year I had this card and it covered my deductible. When you sign up they will give you a letter to print out or you can add it to your digital wallet if you use Apple Wallet or Google Pay.

    https://www.verzenio.com/savings-support#continuous-care

  • mkestrel
    mkestrel Member Posts: 180
    edited January 2022

    Thank you Emac877. That's the one I signed up for, the savings card. I never heard back from pharmacy but I did leave a message with my onc too. Apparently it finally went through because the app says it shipped. I'm sure everyone has the same problem in January and they're all on overload (plus covid) so I tried very hard to be nice on phone calls lol. What a headache! I'm finally able to stay on the same dose though and not really having gut issues too often so I'm hoping to stay on this a while.

  • emac877
    emac877 Member Posts: 688
    edited January 2022

    Oh good! I'm glad it went through. You are right about January. I had signed up last year. On my most recent refill they charged a $100 copay and I just about fell over. I realized I had not signed back up for the program this year so I have to take that in to the pharmacy tomorrow.

  • maaaki
    maaaki Member Posts: 105
    edited January 2022

    Hi, I dont post often but got here so many good advises. And I was always looking for some positive news. So I would like to post one. I had started taking verzenios last december, after small progression on kisqali and faslodex (two new mets in spine) that were irradiated by SBRT in december 2020. Yesterday I had mri scan of liver (had one met in 2017, resected) and liver is clean and spine stable. So interchanging from one CDK4-6 inhibitor (kisali) to another verzenio can in some cases work. I take verzenio longer than kisqali now. Taking it together with letrozole. I already took AI exemestan as first line from 2017 to 2019 when I had one met in liver and one in spine.

  • husband11
    husband11 Member Posts: 1,287
    edited January 2022

    Maaki, that is great. Especially confirmed by mri. My wife was on palbo and letrozole for a couple of years, and near the end her tumor markers were continuing to rise. She switched to verzenio and her tumor markers have fallen back down to their lowest level they were ever at. Not as conclusive as there was never progression then regression on a scan, but if the tumor markers mean anything, the switch worked.

  • maaaki
    maaaki Member Posts: 105
    edited January 2022

    Husband11 I remeber your posts from year ago. They gave me hope. Thank you. Also I have read that your wife is taking enobosarm. Is she still taking it? I was thinking about it as well, since there is study on verzenios and enobosarm. My liver met had 99% of androgen receptors. But this was in 2017. I dont know what is on my vertebra, it was not biopsied. I wish your wife long run on verzenios

  • husband11
    husband11 Member Posts: 1,287
    edited January 2022

    Yes, she is still taking 9mg enobosarm daily. It really helps with her energy. It would be unscientific to give it any more impact than that, as it could be solely the verzenio lowering her tumor markers. Or not.

  • going2beatthis
    going2beatthis Member Posts: 200
    edited January 2022

    Ivla: "For Verzenio, is it better to take before or after a meal, or with food?"

    I normally take it after breakfast with lots of water in the am and about 45-60 minutes after taking my AI in the pm (again with lots of water). I take my Letrozole (AI) with dinner.

    When I first started taking Verzenio (about 1 1/2 months after starting Letrozole) I found that if I took it at the same time or shortly after the Letrozole I would experience numbness in my lower legs. Leaving that gap in time resolved my issue with numbness.

    Ivla, I never experienced any diarrhea from the Verzenio which I attribute to the amount of water I am drinking and the Bio K+ PROBIOTICS I take twice a day (1/2 in am and 1/2 before dinner).

  • going2beatthis
    going2beatthis Member Posts: 200
    edited January 2022

    I have been on Verzenio for 10 months and Letrozole for almost 1 year. Today I had labs done and my White Blood Count (WBC) dropped from 5.0 (11/22/21) to 3.4 and other philes related to WBC are all low. My oncologist does not think I need to reduce my Verzenio dosage (150mg) at this time. Just did some research and see that both low WBC and high cholesterol (which mine is after being on Letrozole for 6 mos) can be caused by Letrozole. Has anyone else experienced this? Has anyone changed their aromatase inhibitor from Letrozole to Exemestane which I read does not have the same effect on your cholesterol levels. Am still trying to find out if it causes low WBC.

  • going2beatthis
    going2beatthis Member Posts: 200
    edited January 2022

    MKestrel,

    have you checked out the Lilly Cares Foundation Patient Assistance Program to see if you meet their program eligibility requirements (based on Adjusted Gross Income)? Their website is Lillycares.com. Good luck.

  • mkestrel
    mkestrel Member Posts: 180
    edited January 2022

    Thank you Going2BeatThis. I will check that out. I did sign up for the savings card, which finally went through. It paid for the copay and to my shock and relief also counted toward my deductible and max out of pocket!! For us this means being able to catch up a little instead of crossing a red line financially and for us it's huge. We both work, don't have kids, don't qualify for any other assistance programs and have had to meet high deductible and max out of pocket five years in a row. I had to take short-term disability for 3 months last year. FMLA ran out and I went back to work literally the day after finishing radiation. It has been a menacing snowballing avalanche. Having to continue working full time is exhausting and I'm not sure how long I can keep it up, though. For now, they are allowing extra breaks. I might qualify for disability but it's only $15,000 a year and I would have to still pay for health insurance for two years. Cross that bridge when I'm pushed off it, I guess. I'm sure plenty of other people are in the same boat.

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2022

    hi everyone. I was previously on a study since Feb 2019 and therefore Verzenio was available to me through UCLA health for free. I was notified today that the sponsor and UCLA won't provide me verzenio anymore but I am doing good on this Medication and now having a panic attack. What are my options? How do I get verzenio from now on. How much is the cost of it with my insurance Blue shield of California PPO plan? Do you think it's wise to move to Ibranc if my doctor offer that instead of V? Please help me with answering any of my questions if you can. Your help is appreciated so much.




  • star2017
    star2017 Member Posts: 370
    edited January 2022

    Ailurophile - is there anyone at your doctor's office that can help you apply for a copay card to reduce the cost to $0?

  • ailurophile
    ailurophile Member Posts: 124
    edited February 2022

    They said they are working on it. The problem is the process is time consuming and I only have meds till Wednesday. I am running out of V. Also my family's yearly income is not fit in that category to be included in lillys help program but we are average class family that can not afford 3000 for 2 weeks of meds😭

    I am freaked out

  • emac877
    emac877 Member Posts: 688
    edited February 2022

    Sometimes doctors offices will have a small supply of Verzenio to tide patients over. It's not usually a month's worth but a few days. I have Blue Cross Blue Shield of Oregon through my employer and it does cover Verzenio. Has BCBS indicated they are rejecting it? The first year I was put on Verzenio, BCBS denied me because I it was prescribed as a first line treatment. I used the LillyCares program for a year and now it is covered by insurance. I agree with Star, there should be someone at your doctor's office whos job is to manage insurance and accessibility issues.

  • ailurophile
    ailurophile Member Posts: 124
    edited February 2022

    emac877

    Thank you so much for your reply. I heard back from their office and it's good news. My copay is 200 a month with my blueshield of California. As star2017 mentioned, I enrolled for copay card and we will see if that helps to bring the copay to zero! Also they pushed the research to give me one more month of V while we figure it out about every thing from copay .

  • vlnrph
    vlnrph Member Posts: 515
    edited February 2022

    Even though I'm retired from active practice (and actually let my license expire because I don't plan on working in any medication dispensing function ever again), I feel qualified to give all of you the title “Assistant Pharmacist" due to having so much experience in drug procurement and knowledge!

    Husband leads the way with his succinct and accurate analysis of AUC including the recommendation to be consistent in dosing. Personally, taking my Verzenio is a low fat breakfast and dinner routine, about 12 hours apart, with two Fibercon tablets at lunch for diarrhea control.

    January was always a headache in the drugstore when people changed their prescription insurance and neglected to inform us. Same with rebate programs or co-pay/savings cards which often expired at the end of the year. Put a tickler in your calendar for next December and renew ahead of time.

  • el_tigre
    el_tigre Member Posts: 453
    edited February 2022

    Hi Newbie here

    I was on Kisqali and anastrozole and after pain in back (compression fracture T11) and more progression shown on CT then my onc switched me from Kisqali to Verzenio (March 2022) and Anastrozole to Faslodex (2/16/22). I felt she switched me hastily from Kisqali but I am hopeful for stability or smaller lesions from starting Verzenio.

    I hope that Ibrance and Kisqali might still be on the table for a later date.

    My mets are mostly in bone with a few suspicious areas on liver but not confirmed. I did have a met in colon but had a colectomy last Oct and spots in Ovaries removed last Nov 2021.

    Looking forward to going through this will everyone :)

    Tigre

  • emac877
    emac877 Member Posts: 688
    edited February 2022

    Welcome El_Tigre. There's a lot of good info here. I hope you have a good response with Verzenio.