Abemaciclib Verzenio for Stage IV
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workingmom: happy for you. could you possibly share details about the trial (is it JPCE one?)? how exactly are they monitoring your thyroid function and other endocrine function, for example? also, what were your tumor markers at the start of the trial, and what are they now? and--as zarovka also wants to know--is there any way of telling if your immune system is being engaged, meaning that the keytruda is actually working, and not just the verzenio? (my oncologist thinks verzenio--when it kick in (for me, it seems it worked right away, judging by trending-down tumor markers, although not so dramatically that i could tell a difference in wellbeing or symptoms until now, four months in. now my breathing is a tad easier)-- works more rapidly than immunotherapy (and he claims there is no way of telling which one is working, but i don't see how an immune system activation wouldn't show characteristic blood markers), so i am wondering whether your positive results could be due to verzenio only.) have you had any subtle side effects that might be due to endocrine toxicity of keytruda, or just the fairly-typical verzenio-diarrhea?--thanks for any info beyond the basic info you have shared!
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Working Mom- Fantastic news!! Any info about your trial is appreciated! And any side effects you notice, of course!!!
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Has anyone successfully tried to get Verzenio covered by their insurance? Apparently the med isn't covered yet by Medicare, which would mean my insurance might not cover it either. I'd appreciate any information about this issue. It's about 6 grand a month without insurance for those who are not eligible for assistance.
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Sandilee -
Verzenio is covered by my insurance which is through my employer. Believe it or not, I only pay a twenty dollar co-pay per 28 day cycle. I would love to retire, but I have checked with several medicare Part D insurers and it looks like it is covered, but the co-pay for it is at 25%, which would be about $3,000. After you reach $5,000 out of pocket on Medicare Part D, you go down to a 5% co-payment, or about $600 per month for the Verzenio. All in all, I figured that this medication would cost me about $11,000 per year. And that's before we start talking about Faslodex.........I would love to retire, but I'm thinking that I can't afford it. I don't know what people do. If my math is off, or if anyone knows something I don't about how Medicare works, please let me know!!
Donna
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Thanks, Donna. That gives me hope that my employer based insurance might cover it as well. I will ask at my onc's office about the Medicare coverage, but my online gov website checking didn't look as promising. I might be able to manage 11,000, but not 72,000 per year, if i were lucky to have it work for me for that long.
Dear husband is planning to retire next year, and I'd really love for him to be able to do it. He is ready.
I hope it is working for you and is effective for a long time!
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Sandlee - My Medicare Part D covers Verzenio although I'm not on that treatment yet. Also there are foundations supported by the drug companies that can pay for your copay if you qualify. Two that I have used for other high copays of targeted therapy are PAN Foundation and Patient Advocate Foundation. Their websites include the income requirements. You can apply online and usually receive an answer almost immediately on your eligibility. Yes, the switch to Medicare drug plan can be a shock, but I have been able to get my targeted therapy copays covered 100 percent so far.
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Thank you Moissy for the info on those foundations. I will check them out. Maybe my dream of retirement can come true!
Donna
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Donna, I too was shocked when I saw what my out-of-pocket would be on Medicare after having been on private insurance. But the foundations have picked it all up. They open and close periodically throughout the year, so if the fund indicates it is closed, it may reopen in a few weeks. That seems to bewhat happens all year long. Good luck. Happy retirement!
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Moissy- Would you mind telling me which company you used for Part D? I will need to choose one next year. I'm pretty sure we won't qualify for assistance.
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I chose ExpressScripts, however I had obsessively compared several Part D drug plans when I became eligible last year and they all seemed to cover the cancer drugs I anticipated taking in the future. Medicare drug companies are required to cover almost all cancer drugs, according to the American Cancer Society website. (Be sure to search for abemaciclib if Verzenio doesn't show up in the formulary.)
Regarding the foundations, PAN foundation provides coverage if you are on Medicare and your income is up to 400-500% of the federal poverty level. For 2018, this means a single person with income up to about $60,000 annually may qualify. For a family size of two, income could be up to about $82,000. And it goes up from there based on family size. I had also looked into manufacturer's programs also, and it seems if you have Medicare and are unable to get assistance from the foundations, the drug companies in some cases may provide the medication to you directly sometimes for free if you can show that your drug plan turned you down. The deal is that they want you to have access to their meds and they stand to make a significant amount of money from what Medicare pays them directly, so they will, in many cases, make the investment to make sure nothing stands in the way of you affording a copay to get the meds.
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Thank you, Moissy. That is very helpful information.
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Hello all,
Well I got my pet/ct can results today. Not good. My tumor markers were rising steadily on Faslodex alone so we started Fas and Verzenio today. The scan affirms progression.
It appears that the little sons of bitches have invaded my liver. 11 x 10 mm with SUV of 5.8 on left hepatic lobe.
Progression in all bone mets. The only positive was that the previously active left supraclavicular lymph node was negative.
Nothing in lungs or other organs.
In spite of the little positive info, I am having a very real meltdown today. I had hoped that the scan would reveal death of cancer cells. Nope. Nada.
We will go forward with the Fas and Verz and blood test again on June 6th.
If there is anything you can say that will break me out of this downward spiral I would be grateful.
Chats
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Chatsworthgirl, I would look into speaking with an Interventional Radiologist about ablating that one liver tumor. But do it soon because they usually won't ablate more than 2. At least that was the cut off in my case. That is great new on the lymph node clearing up and bone mets take a little longer to clear up. You only have 1 small liver tumor, so not to worry.
Hugs,
Robin
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Great observation Robin. Chats -If necesssary go around your medical oncologist and make the appointment with the IR yourself. MO's don't always understand the role or timing of local treatment of liver mets. There is an excellent thread where this type of treatment is discussed in detail. This is very important comment. I don't see zometa on your treatment list. It can be combined with Abemaciclib and should be considered.
It was a pile of sucky news, a meltdown is called for. Many of us have gotten through these periods and are doing well. Robin and I are both good examples of this. Keep fighting.
>Z<
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OK Robin and Z,
I will get on the ablation first thing in the morning. I will also discuss Zometa with the Onc.
Thank you so much.
Chats
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Has anyone been on Verzenio at two different times? To clarify, verzenio treatment, then another type of drug treatment, then back on Verzenio?
Anybody had trouble with blood clots while on Verzenio?
Therese
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Hi. I'm new to this thread but not new to the board. I've been lurking since I was dx'd with progression last month. My bone scan lit up like a Christmas tree. I have a pleural effusion and according to the CT report, my liver tumors have "near complete replacement of the hepatic outer surface." My onc started me on letrozole and I got some immediate lung and liver improvement. My urine was back to normal color after a week and I am able to breathe much better. I am also on xgeva and started verzenio two weeks ago. I'm having some diarrhea. So far it's manageable. My urine became discolored again after starting verzenio. And I'm having serious nausea that is keeping me in the house for the most part. Medical marijuana seems to be the only thing that gives me a little relief from the nausea and gives me an appetite. I have lost 24 lbs in two months - no appetite at all. I've finally made my way through this whole thread and hope everyone is doing well. If anyone has ANY suggestions or tips about this treatment, I am all ears. Would really like to get the nausea and appetite under control.
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lanagraves: i'd stick it out for another month, then reduce the dose if your nausea and inappetence haven't resolved. it took a dose-reduction for me to make the side effects manageable. my main one was grade-4 diarrhea, but i also had very little appetite and some nausea.
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update: i still have serious diarrhea about two days a week. and a few of my nails--both toe and finger-- have started to detach, from the tip in. other than that, nothing to report.
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Went to onc today for blood work. Will have numbers tomorrow. He is confident that it is working. He thinks the nausea and loss of appetite are from the number of large lesions on my liver. He says that as those shrink, my appetite will come back. He told me to start taking loperamide as soon as I wake up in the mornings to combat some of the diarrhea. My cough from the pleural effusion is awful, but everything else seems to be ok for now.
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lanagraves - in my experience, extensive liver mets interrupt appetite and digestion. it's a reasonable explanation, but abemaciclib is hard on digestion as well. or so i hear. not on it yet, but considering it ... so monitor this thread.
>Z<
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Hi Lanagraves - I agree with your doc. My appetite has made a bit of a comeback. My last PET showed shrinkage on my large liver met. Diarrhea is pretty much under control, only one or two days a week, but the nausea seems to be getting worse and I don't know why. I have been losing my breakfast about once a week, kinda like morning sickness LOL! And this is stuff like oatmeal, nothing that would trigger a reaction like that. But since the med is working, it's worth the minor SEs.
Donna
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I wanted to drop in and give an update about the Verzinio. Since my dosage was reduced to 100 m g twice daily I have felt great. I have a very occasional bout of what I call light diarrhea but that is it. I am "sad" for lack of a better word because it is more like devastated to report that I may stop doing this treatment. I think it is the Faslodex that causes the emotional side effects for me and I asked my onc if I could stop the shots and continue the verzenio and he said it wouldn't work then. Of course he added that I am the only patient of his that has these problems. He said he had already reduced the verzenio dosage and I told him that since then my stomach problems had completely stopped but the emotional break downs are getting worse. He said to deal with my stress.
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I had to quit taking the letrozole in 2015 because I literally could not stop crying. It wasn't depression but I had a bad r.elationship with my boss and I got my feelings hurt and was on the verge of tears all the time.c I mean all of the time. I know that sounds ridiculous and it was unreasonable but I could not stop. I proactively sought every solution in therapy and with antidepressants. Anyway, it was the job or the letrozole. I lasted 2 1/2 years on it and I was cancer free for 5 years.
Now I am looking for a different treatment other than stopping the treatment all together. I have had two episodes in the last month that have kept me out of work for about 4 days each. Sobbing until my eyes were almost shut. All I know is that this never happened until I started the anti-estrogen therapy. I have looked over this thread and also the Faslodex thread and I do seem to be the only one with this adverse .reaction to the point of stopping treatment.
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Spiced life - Get a second opinion. Abemaciclib has been proven effective as a single agent so that a patently incorrect statement. Luce is taking it as a single agent.
I did not like being on hormone suppression, actually prefer chemo. My experience was not as severe as what people are describing. However, I know the stuff is hard and the oncologists don't have to take it, you do.
And when your oncologist tells you to "deal with your stress", please hear me in the background telling him to go f@#K himself. You have a very serious and challenging situation to deal with ... treating the cancer vs depression. Your MO's response is NOT appropriate.
I don't know what you should do, but abemaciclib mono therapy IS an option. Treating the depression with more drugs might be an option ... not an expert on that. I am always hesitant to lay more drugs on top of drugs but I also hear people having life changing experiences with the anti-depressants.
>Z<
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spicedlife. i second zarovka. abemaciclib is approved as monotherapy. your oncologist is plain wrong, besides being an asshole. your response likely won't be as durable or dramatic when taken as monotherapy (only 7 months, according to studies), but being terribly depressed from anti-estrogens may not be worth the longer response of combination therapy.
to reiterate: there is no reason to go off abemaciclib (until/unless you stop responding) should you decide to discontinue letrozole or whatever anti-estrogen shots you are on.
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Thanks Z, I think his responses wrong in so many ways and I'll keep the image of you in my mind. I will check with my md about a medicine change. I just now realized that there is one med that I take that could go up in dosage and it might really help! I take 3 already so I didn't consider that because before the shots started I was really stable.
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So I learned something new today: Verzenio probably starts working right away in pretty much everyone in whom it works. The reason the insert says 3-7 months until response is that the studies get monitored with imaging not tumor markers. And it can take up to/between 3 and 7 months to see a difference with imaging. I have been rejecting imaging whenever possible (too much radiation; not definitive with lobular, which I probably have) but have been getting tumor markers every month since starting Verzenio in mid-January. Mine remain pretty darn high but started trending down right away. (That trend has since slowed, and wasn't terribly dramatic to begin with.)
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Hello again,
Z I spoke to the onc about ablation of the lesion on my liver. He said that it made no sense as I have numerous lesions on my bones and that the purpose of the drugs was to reduce them all. He said that if I had only one lesion on my liver and nothing else then ablation would be proper. So I guess I have to ride the drug train and see what happens.
I have been on Verzenio with Faslodex now for a week. I have bouts of insomnia, been having a bit of diarrhea but nothing too serious. Since I have been on Verzenio sometimes I just feel awful. Not sick exactly but just ugh. I assume it's because my white blood cells are being beaten up. I won't know what the tumor markers have to say until June 6 when we do the blood work and I get the Xgeva shot. We had to split up the drugs because when I get too many at once it really knocks me down.
It was good to read that Verzenio works fast and that there has been a downward trend in markers for Luce. I would take any downward trend as good news even if it was just 5 points at a time.
Luce if I may ask, what were your tms prior to Verzenio? Mine were CA 27 at 873 and the CA 15 about 1000.
Chats
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Ok, it is official. I am back on Verzenio. Lowest dose possible and then we will increase it as long as liver enzymes are acceptable. I also found out I have liver scarring, so I have to do my research on that.
I am not in a good place. Need to process....
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