Abemaciclib Verzenio for Stage IV
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in my experience, that's just the process. it gets denied, your provider (or you) file an appeal, gets denied again. THEN you can apply to lily's program and will most likely be approved. at least that's how it worked in my case.
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Sadieservant, you may want to request a written denial from the insurance company outlining the reasons for the denial. That may help in identifying the issues that need to be resolved from the insurance company's perspective. I was denied Ibrance and ended up doing the second appeal myself after reading the horrendous letter written by the social worker who used to handle denials and appeals at my cancer center. After reading the letter the social worker wrote, I would not have approved the medication either. I was so shocked when I realized this must be happening to other patients who were being denied life saving medications due to the incompetence and/or laziness of the staff at the center. I ended up taking this issue up the chain and the social worker was removed from those duties. She still works at the center but does not touch appeals anymore, thank goodness. You may need to take matters into your own hands. My medication was quickly approved after I wrote my own letter.
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Thanks JFL. In this case I did receive it on writing. The reason for denial is that I previously received chemotherapy for advanced BC. This is ridiculous as I’m sure that is in line with approved use but the challenge is that the drug is quite new here. I will regroup, wait to see what the drug company does and then figure out my next plan of attack.
I appreciate the support everyone.
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Hi All. Just a quick update to let you know that the drug company will continue to provide access to Verzenio under their compassionate access program. Phew! That’s a tremendous relief. I might have been able to swing some type of payment depending on the cost but it’s wonderful to not have that worry at least for now!
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So glad that worked out, Sadie!
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Thanks. I only wish it had worked out better for you. Here’s hoping a solution is on the horizon. I suspect in my case they hope to demonstrate results to make inroads in Canada.
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hi everyone - Been taking a break from boards. I am still on same treatment noted in bio below. I still struggle with SEs of GI tract and fatigue are the top 2. I definitely have food triggers that wreak total havoc on GI tract. I could eat anything I wanted before, but no longer...but so far the treatment is working. Tumor markers bumped up from normal following a few months after CyberKnife treatment, but returned to normal. I took my first real trip out of country last week and shirked the Verzenio. I was feeling lousy for several days before departure, and basically said f—- it. I just wanted to feel like me again and took maybe 2 pills in 7 days and that made a difference. Now, I’m back in full dosing and feeling that too. It’s scan-apalooza time in December- wish me luck. Cheers everyone- I know it’s really hard sometimes. I think of you all often
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Sadie, glad to hear the drug company came through! I can’t believe the reason your insurance company cited for the denial! Ridiculous
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I'll be joining you ladies soon, as soon as I can get some sort of assistance for the drug. They currently want me to pay 5%, only $640 per month, until January. Then I have to cover 20%, only $2500 a month. Ya, let me just pull that out of my back pocket or off of my money tree! No grants available, so have to wait and see if manufacture will help.
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Goldie,
I'm still on Ibrance/faslodex, but check here periodically. On the Ibrance thread, often people advise folks to contact their oncologist offices -- they may have someone on board who could check this stuff out for you. If you are not doing that, perhaps it would be a good idea? Also, Jaycee from the Ibrance thread knows of a lot of patient organizations that provide grants for certain drugs or for certain conditions -- perhaps one of those would work for you? They all calculate assistance based upon your adjusted gross income.
I'm on Medicare, too, and the copays really stink. I'm looking at my next drug pickup at the "reduced" amount of $570 in December, and then I pop right back up with the big bucks. I really had to take a deep breath when I realized how much this drug was going to cost me. It's ridiculous.
Good luck!
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Goldie, next year after the $2500 January payment, you'll probably drop down to the $600 range the rest of the year.
Yep, I, too just purchased a month's worth of Verzenio for about $2400 because Medicare is now my current health insurance. Previously, on dh's employer's insurance I paid $0. I exhausted all avenues spending weeks looking for any kind of financial assistance available, much online research, contacting the company as well as the financial navigator at the cancer center. Dh and my 2018 adjusted gross income was several thousand dollars over the limit to qualify, no getting around it. The financial nav was extremely nice, searching far and wide and I could tell she felt badly she could not help.
Even the pharmacist, who called to go over the order before shipment and wanted to direct me to the Verzenio company for financial help, expressed her deep regret that I was stuck with the high payment! I told her I'd already looked in to every possibility. I have to say, I appreciated that she was so compassionate about it, and it made me feel like it was less of a cold cold world out there.
I will pay about $650 for another round of Verzenio end of December, then it resets in January with the hefty $2500 again. Then $650 a month. Our agi for 2019, when we file, will also be too high for financial assistance. It won't be till we file 2020 taxes our income will show much less income. I figure I can handle 14 months of this shit. If Verzenio even works, right?
The way I look at it, I helped with some of ds's college tuition, I live in a nice home and drive a nice car, and I was okay spending money on all that. I have to be okay spending big money on a drug that may save my life for awhile. It took me a long time to come around to this way of thinking, but I'm getting there. The sticker shock sucks, but I do have the money to pay, and it's not like I will be depriving myself of food or electric or anything, my life is comfortable. I guess to my surprise, I'm doing a good effing job “adulting."
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Goldie/DivineMrsM,
I think it sucks that you need to pay anything. I thought I was going to be in your place and it was a bitter pill to swallow, figuratively and literally. I feel very fortunate that’s not the case.
On a positive note, going down to 200 mg once a day has been brilliant. No diarrhea to speak of (only once and it was night so no impact on my ability to go to work), mild nausea in the morning but it abates quickly and I CAN TASTE! Not 100% normal but what a relief. I felt like such a whiner but the first couple of months made me seriously think about QOL and how to stick with this drug over the long haul. For those of you struggling you might want to consider dosing once per day.
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Divine, glad you are able to pay for the drug, not the case for me. The guy I talked to said that because we make less than 100,000 per year, they should help me.
Sadie, my onc is starting me out on 200 mg per day....if I can get it! Hoping all of my SE's from Xeloda disappear!
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Goldie, the Lily company site provides this chart on income limits to qualify for financial assistance to help pay for the Verzenio.
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Thank you Devine. I do fall into the guidelines. I've gone to the site and will put it in my favorites and will apply if the manufacture will not help.
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DivineMrsM, I find that I fill up fast too and have no appetite. Food is not enjoyable anymore. I also have no stamina.
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Hello,
I just wanted to ask if there is anyone here that has recieved abemaciclib after developing a resistance for palbociclib. I found a paper in which it said that it may work for some people.
Also for the people taking abemaciclib instead of palbociclib: Why is this so? What reasons did your MO give? Or did you do deciede on your own?
Thank you in advance!
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Pink, after about 7 years on Arimidex, I had progression in March. I was put on Aromason and Ibrance (palbo) but after four months, more progression. So onc switched me to Verzenio (abemaciclib). I’m in my 4th month of taking it, but I have my doubts if its doing anything to stop the progression. There have been numerous additional bone mets on my last scan, and my body has aches. I would think they would go away some if the Verzenio was working. But some say its a slow starter, so I may try to give it a bit longer.
I have heard, as you did, that abemaciclib can be effect even if palbo isnt or stops working.
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Verzenio (abemaciclib) appears to be effective for some patients after progression on Ibrance (Palbociclib). Below is an excerpt from my book, "The Insider's Guide to Metastatic Breast Cancer," which is also available in a complimentary .pdf. For more information, please visit https://www.insidersguidembc.com/about
Taking Verzenio after Prior Failure on Ibrance or Kisqali:
Although Ibrance, Kisqali and Verzenio are CDK4/6 inhibitors, Verzenio works somewhat differently.In an effort to determine whether Verzenio might be effective in patients previously treated with Ibrance, a small study of 19 evaluable heavily pre-treated HR+ HER2- MBC patients conducted by the Moffitt Cancer Center concluded that Verzenio did in fact elicit a response in a significant number of patients who previously took Ibrance in combination with endocrine therapy.The study participants had previously received a mean of 5.6 prior therapies, and 73.6% had visceral involvement (including brain metastasis in 26%).15 of the study patients were given Verzenio in combination with endocrine therapy and 4 patients received Verzenio as a single agent.The median Progression Free Survival (PFS) on Verzenio was 7.0 months, and although no partial or complete responses were observed, 33% of the patients had stable disease. From: https://meetinglibrary.asco.org/record/177494/abstract
From Feb. 2015 to Jan. 2019, a somewhat larger study evaluated clinical outcomes in patients with HR+/HER2- MBC who received Verzenio after progressing on either Ibrance or Kisqali in combination with endocrine therapy.Although 20 (34%) of the patients on Verzenio had disease progression in less than 3 months, 21 patients (36%) had a treatment response duration exceeding 6 months - including 10 patients who remained on treatment at interim analysis (range 181-413 days).The median PFS on Verzenio following a prior CDK4/6 inhibitor was 5.8 months.(Interestingly, a preliminary analysis of circulating free DNA revealed RB1 and FGFR1 alterations in patients who exhibited progressive disease). From: https://meetinglibrary.asco.org/record/175766/abstract
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Hi Pink,
In my case I did not fail on Ibrance. Instead, it quickly became evident that my blood would not tolerate it. My red blood cells and, as a result hemoglobin, continuously declined to the point that I was going to need blood transfusions if I continued. My MO called a halt to the Ibrance and then the Arimidex failed shortly after that.
We started Verzenio as soon as it became available here in Canada in the hopes I would do better as it is not typically as hard on the blood. Unfortunately it looks like I may be experiencing challenges yet again. Bloodwork today showed a substantial drop in my RBCs and hemoglobin in addition to further drops in my WBCs, neutrophils and lymphocytes. Hemoglobin not low enough to stop or delay treatment but I am a bit worried that history is repeating itself. Only time will tell
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Hello guys,
thank you for your insight and good luck to you all!
Exactly Bestbird I have also read about these studies that is why I ask.
I just would like to know if there is anyone here that has developed a resistance to palbocilcib and for whom abemaciclib still works. Because in the papers describing the studies there was no information about for whom abemaciclib still worked.
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Well, I got my V and started it Monday. Waiting on Faslodex, who ever submitted it for authorization, did not include my diagnosis, so I was denied. Anyways, just wondering how long before SE's hit, and which ones are most common. My MO says the diarrhea, but it should subside in about a month. Also, how long have you been on it.
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Goldie, I am in month 4. The diarrhea was an issue the first several months but controllable. Nausea is my biggest problem and I’m trying different meds to lessen it. My appetite has changed, I fill up fast but sometimes am still hungry if that makes sense. Low wbc and rbc counts leave me with less stamina. I have to pace myself and take it easy.
It’s been a rough drug to adjust to. What’s helped me is gradually simplifying my life in different areas. Instead of waiting to cook when dh gets home, I cook when I feel like it and he can reheat it whenever. I also just cook less. Its harder to cook with nausea. Often dh will get groceries with me or he will run out to get them alone. He helps me change the bedsheets. I asked my sister to take me to the mall, about a 40 minute drive. Before, I would jump in the car and go myself.
I also take it easy and don’t feel guilt. I simplified Christmas this year and my only complaint is why the heck didn’t I do that sooner. It’ll still be a very nice Christmas. Instead of preparing all the food myself, ds and his girlfriend will help me make Christmas Eve brunch. The night of Christmas Eve will be at my sister’s instead of my place. I am 100% okay with all these changes. I am not going to take on more. I want to lighten my load.
Good luck with V. I hope it does you well.
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Hi Goldie,
I'm about three months in and doing pretty well now that I'm on a reduced dose. My MO started me at 200 mg twice a day which was brutal. The nausea was unbearable. I dropped to 150 mg twice a day but still had nausea and mouth issues so dropped further to 200 mg once a day. That seems to have been the ticket. I have almost no nausea now. My taste has not returned to normal but I can live with it (able to drink wine again!). I've had some issues with mouth sores but seem to have it under control. I don't have diarrhea now (at it's worst I had only one loose stool per day) but do still have episodes of severe cramping. Go figure...
Biggest issue for me at the moment is my blood. My RBCs, hemoglobin, WBCs and neutrophils appear to be dropping. I'm particularly concerned about the RBC/hemoglobin as I had to stop Ibrance due to anemia a couple of years ago. I'm due for bloodwork tomorrow so we'll see if it's any better. I doubt it as I am SOB and am feeling tired.
I found that it took about 8-10 days before I had noticeable side effects other than losing my sense of taste which came on pretty quickly. Diarrhea is pretty common so you will likely want to stick close to home for the first few weeks.
Good luck with the treatment. I hope you are able to get the longevity you got with Xeloda!
Pat
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Thank you girls, I do appreciate your input. At first we were going to try Ibrance, which scared me due to low blood counts, didn't know it was a big issue with Verzenio. I will also be doing Faslodex with it. MO started me out low, 100mg twice a day. I do have one guest coming for Xmas, just a friend. Hoping I will be ok to clean prior and cook. Hospital is an hour away from me and my MO is a 4 hour drive one way!
When I started Xeloda, he wanted me to do labs and see him every 4 weeks, I said no. I said I would do 6 weeks, as I didn't think 2 weeks would make any difference! I love my MO, and he let's me make the decisions.
Divine, I won't have to worry about cooking when I feel like it, I already do that! I like fresh cooked meals and hubby doesn't eat the same things I do. His comes out of the freezer, a box or a can and into the micro wave! Sounds like you have things under control for Xmas. What dose are you on?
SS (SadiesServant), I'm glad MO started me low. When starting X, I was started on a high dose, I said I'm not doing this, I'd rather die, and I meant that, it was horrible. I have to tell you, another friend of mine here on the boards has a golden and her name is Sadie, so when I see your name, it so reminds me of her and her Sadie. Wishing you good luck on your labs, please let us know. Hmmmmm, SOB? I only know that as son of a B****, is there something else?
SS, I see you are bone and lungs. Divine, you are bone only? Do either of you have pain? I have none, for which I am so very grateful for.
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Goldie, you made me smile (much appreciated as I’m in a cranky mood - will explain). Your definition could work but I meant shortness of breath. 🙃 The lack of hemoglobin does that.
It’s great to see you pushing back on tests, etc. I’m in a bit of mood tonight as I received my next six months worth of Pamidronate appointments (bone strengthener) and once again they have all been scheduled for 7:15 AM. It’s an absolute killer for me. Mornings are typically not great as it takes time for the pain meds to kick in but I also have to get the dog walked etc and get ready for work. I don’t have a significant other, no kids and an 89 year old mother that needs my support. Most of the time I do okay but every now and then... it gets on top of me. I hate being difficult but will phone the Cancer Agency tomorrow to say, uh, no. Reschedule or I will take my chances and skip the infusions. Sigh... sorry to winge.
As to pain, I don’t have a lot now but there have been times when i had more. Radiation treatments can be a godsend. Now it’s mostly my right hip that gives me heck and aches/pains from the hormone treatment. I am having some weird numbness from the skull mets which I am monitoring. If they get worse I will need to radiate although I hoped the Verzenio would knock them out.
I also thought Verzenio would be kinder to my blood. With Ibrance I didn’t have much trouble with the neutrophils which is typically the biggest issue. Instead it was my red blood cells and hemoglobin. I don’t think it was expected that I would have this trouble with Verzenio. It may just be me (possibly bone marrow involvement) so I wouldn’t worry.
I hope all goes well for you.
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SS, glad to make you smile. Shortness of breath, I should have known that, but you know...chemo brain! Never heard of Pamidronate, it's an infusion you get every morning? Sounds like you have a lot on your plate, not only having to take care of yourself, but your mother too. And you mention managing pain, so I see you ARE in pain. This disease is one that just cannot be figured out. So many variables and the effects on everyone can be oh so different! I can't even remember where all I have bone mets, I know for sure hips, ribs, jaw, spine and skull and I think the top of one of my thighs, I don't know!
Day 4, good for now, but I know it's too soon!
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I am on Verzenio alone - 200 mg twice a day and only on pill 4 so far. I had progression on Ibrance about a two years ago and after a few other medications, Here I am. My Onc told me to start with Imodium right away and I have been constipated for the last 2 days after only one Imodium pill.
Early days so far with this med. Is anyone else on this protocol after failing on a different cdk 4/6?
I am about to finish year 4 as stage iv.
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I’ve been on Verzenio/Faslodex/Zometa since last summer and have had challenges for sure....diarrhea/abdominal cramping/fatigue/hair loss/thinning....and now some food intolerances. Diarrhea was crazy at first, then somewhat predictable, but now it’s crazy again. Neutropenic one time - all other labs ok. I started with 150s, but now on the 100s twice a day. I am very grateful that meds are working (PET scan all clear last week)...but at the same time I want a better quality of life. MO suggested to switch to Ibrance knowing if I don’t like it I can switch back...not sure about that yet....since my current regime is working
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Shortness of breath COULD be a symptom of CDK4/6-inhibitor-caused interstitial lung disease (ILD). Just saying. (It can also have no symptoms at all and only show on imaging.) My oncologist just told me it is much more common than first thought. It was first thought of as a rare side-effect. It is not. He said that they, the oncologists, just THOUGHT it was rare because they kept missing it and only saw the incurable, progressive cases. Now it appears it is not rare. Good news is that that means that some cases resolve by itself, or are at least curable by discontinuing CDK4/6 inhibitors (and maybe treating with steroids, although I would not take those as steroids have been implicated in metastasis.) ILD seems to pretty much always go along with an initial episode of fever, though.
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