Abemaciclib Verzenio for Stage IV
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Hi Sadiesservant. I was reviewing my labs and also noticed a decline in eGFR and only a slight rise in creatinine. I have been on verzenio plus letrozole for almost 5 months now at the 150 mg dose. It has been difficult to say the least. Had to come off ibrance because of ANC. ANC ok now, but noticing the drop in eGFR. Mine is not necessarily rapid, but it's obvious. I have a message in to my MO because she didn't mention it at my last appt and I am pretty concerned. Is the change in kidney function irreversible from Verzenio? Certainly I would be concerned about it dropping too low and causing kidney damage. This is really the first class of inhibitor I am taking for mBC and with good results so far, so I hate to think about tossing in the towel too soon on this one. I am considering requesting a dose reduction if I can't get the side effects managed any better.
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Hi Hopeandgratitude,
I can’t say for sure that it’s reversible but suspect it is. There are many drugs which impact kidney numbers and they typically bounce back once you stop the drug. Hoping my MO can confirm. Interestingly, he pulled me off Ibrance when my hemoglobin dropped to 80 and wouldn’t let me go back on it despite the fact that I could have dropped from 100 to 75 mg. In that case the decline in RBCs was slow as was the drop in Hb. But it took months for my counts to recover and they have never returned to pre-Ibrance levels.
As I said, this time the numbers seem to be dropping very quickly which is why is am a bit stressed. The literature on Verzenio report elevated creatinine but it spiked in the first month and then stabilized. There were some cases of kidney failure in the trials but it’s hard to know if those patients already had compromised kidneys. Mine were just fine before this.
Nothing I can do but wait for my MO to return on Tuesday!
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Devine- I am wondering if your aches and pains are from stopping the aromasin? I got off ofAA about 2 weeks ago and after a couple days I had terrible joint and muscle pain for about 4 days and then moderate discomfort for a few more days. I think it was withdrawal from the aromasin. My MO never heard of that ( of course the internet had) so who knows.
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Nkb, I’m still on the Aromasin.
Emac, I love that you, too, have a tough girl persona. I didn't experience the jaw and lymph node sensitivity you have, hopefully you can get some answers when you see your oncologist. Do you think Tylenol or Ibuprofen would help?
Sadie, you have kind words to say about me, but you, too, are a trouper with Verzenio. I hear you about the blood work and concern over kidney function. My counts are a bit skewed, too, in that area. With all these side effects to contend with, it's discouraging that cdk inhibitors are touted as a miracle drug. Maybe for some, but many put up with troublesome side effects.
The past three days off of Verzenio, I've taken a nap every afternoon. While on the drug, I had such fatigue and wanted to nap so badly, hoping to combat the fatigue. But I almost never could. I slept okay at night most of the time, but now I’m realizing the Verzenio prevented me from getting more rest through the day when I could have used a pick-me-upper nap.
Shortness of breath is slightly less. Remember the drug commercials a couple years ago for I think it was COPD where they showed an elephant sitting on a persons chest to give a visual of what COPD felt like? Well, since stopping V, I feel like an elephant is starting to lift off my chest, an elephant I didn't even feel until it started leaving.
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Hi Sadiesservant - follow up on creatinine and EGFR. I found this article https://ascpt.onlinelibrary.wiley.com/doi/epdf/10.1002/cpt.1296 and it explains in more detail the impact on abemaciclib on creatine and on transporters (that decrease eGFR) rather than on actual kidney function. Made me breathe a sigh of relief for the moment, but it also was clear to me that I want my MO to order tests to assess my renal function so there is no miss, no mistake, on possible kidney damage. I will report back after I hear from her. Hope to hear back from you too. Fingers crossed.
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Hi HopeandGratitude
I heard back from my MO (on a Sunday... he’s so great) and we’ll chat more later in the week. He’s thinking we should consider a dose reduction.
I am aware of the article, thanks, but there are some wrinkles in my case which I need to discuss. Results from the trials indicate that the Creatinine spikes within the first cycle of Abemaciclib and then levels off. This makes sense if the spike is due to the blocked tubule pathway as the creatinine that would normally be pumped out of your system through that path is accumulating. However, in my case the creatinine is continuing to increase. The research paper notes a rise of 15-40% over baseline levels but mine are now up more than 60%.
So, like you, I’m going to ask my MO to measure one of the alternate markers for estimating GFR. It would be good to know for sure that my kidneys are not an issue! It’s always something, isn’t it....
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cure_ious: insurance refuses to pay because i haven't failed (because never took and never will take) anti-estrogen therapy. it is approved as monotherapy after failure on antiestrogentherapy ONLY.
yeah, two years is a good response as mono but unlike the patients in trial, i am not heavily pretreated, so nothing to compare it to. BUT those patients probably weren't as sick as i was either, but probably mostly bone-mets only, according to my onc. so, yes, i have been doing well on it but getting the dose i need may no longer be possible. also, i have a large pleural effusion. i think it started filling up when i flew to europe in september. (not sure why verzenio isn't drying it up anymore. locally resistant?) but it could be pneumonitis from verzenio. no way of telling.
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Arrgh, the lung issue is complicated, there must be a way to tell if its pneumonitis?
Eventually it will be good to switch to something completely different for awhile- what are you keeping an eye on? I'm waiting for more news on Crizotinib, there were studies last summer saying it extends the response to CDK4,6 inhibitors- works on c-Met, which is activated by CDK2 upregulation...But I can't see where there is even a trial ongoing so far- what is the dang hold-up for these guys? Pfizer holds both drugs!! Perhaps in-house they think their CDK2 inhibitor will be better than Crizotinib (or maybe its just when the patents expire!!)
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cure_ious:
Yes, crizotinib would be great in combination with Verzenio but I only know of one person who managed to get it compassionate care, and she lives in Canada.
I was conclusively (after all the escalations) turned down by both lily’s Patient Assistance Program and by my insurance today, after months of battle. I took my last dose of Verzenio last night. I’m not switching to any other drug. The options are terrible and I had been doing great on Verzenio. I’ll rapidly get worse now without it and am looking at taking my suicide meds when I do. Oregon doesn’t have an operational donation program for drugs, which is terrible
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SadiesServant, how long did you get on Ibrance before your RBC and Hg began to drop? Was it right away, or suddenly at some point in treatment?
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Hi Husband,
My RBCs and hemoglobin (hematocrit was also out of whack but they are related measures) starting dropping as soon as I began taking Ibrance. It was a steady decline while I was on it, not a dramatic drop. I asked my MO what was up with my hemoglobin early on and he wasn’t even remotely concerned, acknowledged it was a bit low but nothing to worry about. But then it kept dropping with each cycle and ultimately got down to 80 (I think they report it as 8.0 in the US) and he said, stop. Took only 4-5 months.
As I mentioned on this thread, the decline began again with Verzenio but, at JFL’s suggestion, I started taking Ashwaganda and a vegan iron pill. Not sure if that’s why but I was happy to see that my RBCs and Hb rallied a bit. Still not normal but better than the previous month.
Luce, I’m sorry that access to the drug has been denied by Lilly and your insurer. It’s so horrendous that others get to dictate access to drugs that we need. I wish I could suggest alternatives for you but I know hormone treatments and chemo are not something you want to consider. So sorry...
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Oh, Luce, that is heartbreaking!!! I wish you would just give a try to anti-estrogens, you would have such an easier time of it now, before you were too young (and too young still, but you've been on much lower estrogen the past few years)- I bet you would not even feel the difference. Please give it a shot?!!!!
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also, Luce, I'm re-posting the info about the CDK2,4,6 trial- since you are on straight CDK4,6, if you are resistant you may respond to this three kinase drug, in trials:
Drug name right is PF-06873600 (PF stands for Pfizer, who also make Ibrance). The drug blocks CDK2,4, and 6, and is designed to hit cells that have become resistant to Ibrance (which often means the cancer has activated CDK2). The chemists have been working hard because the CDK4,6 inhibitor part is 100x and 10x stronger than Ibrance or Verzenio, respectively. The CDK2 inhibitor part is very strong also. Frisky was on this trial but had awful side effects, and dropped out- Pfizer subsequently significantly lowered the dosage.
Here is the trial:https://clinicaltrials.gov/ct2/show/NCT03519178
This "Super-Ibrance" drug is being tested alone, or with Faslodex or Femara. It is also being tested alone for triple-negative breast cancers. Trial requires prior I/F plus 1 or 2 chemos in the metastatic setting.
It is offered at UCSF, UCLA, MD Anderson, Memorial Sloan Kettering and Sarah Cannon in Nashville.0 -
Also an update on the more effective SERDs coming along, they think may be able to file for FDA next year?
https://www.evaluate.com/vantage/articles/news/cor...
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cure_ious
thanks for your suggestions! Menopause from chemo has already destroyed my QoL, so I’ll keep the little estrogen my body still makes.
I’m not resistant to Verzenio; all three TMs dropped within the last six weeks. What’s going on in my lung is a mystery. It may have something to do with osmotic pressure or such during 11hour flights to-and-from Europe. I was worse immediately after. Verzenio may no longer be drying that up for some reason but could help keep it down or only slow-filling if I had a thoracentesis. Without Verzenio, it’ll be back in a week.
My oncologist is fully supportive and horrified that a drug I’m responding to is no longer being covered by anyone due to some crazy technicalities. Sure he’d be happier if I considered an alternative but he also feels this is uberhical
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cure_ious
thanks for your suggestions! Menopause from chemo has already destroyed my QoL, so I’ll keep the little estrogen my body still makes.
I’m not resistant to Verzenio; all three TMs dropped within the last six weeks. What’s going on in my lung is a mystery. It may have something to do with osmotic pressure or such during 11hour flights to-and-from Europe. I was worse immediately after. Verzenio may no longer be drying that up for some reason but could help keep it down or only slow-filling if I had a thoracentesis. Without Verzenio, it’ll be back in a week.
My oncologist is fully supportive and horrified that a drug I’m responding to is no longer being covered by anyone due to some crazy technicalities. Sure he’d be happier if I considered an alternative but he also feels this is uberhical
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well if the insurance companies can't be turned around, hopefully your MO can find a good trial, and the Pfizer one has an arm with no endocrine therapy...
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Luce I'm so sorry to read about your predicament....it's fkng crazy! Now we get to die even when one of their normally useless medications happens to work! WTF?
Please don't give up...if you've been able to survive Verzenio's SE effects you would definitely manage the ones associated with the new and improved iBrance at lower doses....
Stay positive and remain alive, you don't know how your body will react...
I stopped all treatments two months ago and I'm feeling better than ever as all those poisons finally are being excreted from my body. Suddenly, I have no longer any problems urinating, and the strong smell that none of my doctors knew how to get rid of...is now gone. My mind is clear and my mood uplifted....and the lesions in my liver have remained stable.
My hemoglobin that had been destroyed and was down to 7 ( i felt faint just getting out of bed) is slowly making a comeback....I honestly will find it hard to go back on any medication now that I'm normal again....we're obviously having opposite reactions to similar problems....
As you know...before the doctors switch medications, there's usually a washout period that lasts weeks, so look at it that way...meanwhile I'm sending you a big hug with the hope that you end up getting the therapy that you want and need!
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Luce, why did Lily deny you. And they were picking it up before? Did you have anyone working with you at the Lily foundation? I had a guy that was doing all the work for me. I could possibly give you his email.
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Luce,
Sorry to hear about the issues you are having. Can't you just have your MO prescribe letrozole and then just not take the pills? That way it would look like your on a AI on paper.
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I guess I missed the fact that Luce was denied because she is not on an AI. Simone I think that is a great idea if it can be pulled off and her MO will oblige.
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hi all, this morning, I was informed that after conclusively (following numerous escalating appeals) denying me Verzenio after two months of battle, Lily Cares did a 180 and approved me for another year. So I’m very relieved. The wo/manhours that went into this are staggering and hugely wasteful. And somehow, my insurance remains off the hook. (By the way, OF COURSE we tried prescribing it with an AI i them wouldn't take, but then i was denied the dose I need.) But I’m just glad I’m getting Verzenio again.
Thank you everyone who expressed their concern
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Thank God Luce. Your perseverance paid off. There are so many terrible aspects to this disease, and having to fight with so many parts of the system makes it all worse.
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Whew, luce. Big sigh of relief for you. So sorry for the awful rollercoaster they've forced you to endure over this. As if just having stage IV cancer was not enough aggravation.
All the best going forward. I'm still wondering why they can't come up with a drug for us that has side effects of euphoria and excess energy. Sheesh.
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Luce,
I am glad to hear this. I was just looking at the NCCN guidelines for another reason a minute ago, and under treatment options, it listed Verzenio (or abemaciclib) as sometimes being a stand alone treatment. So your insurance company should put that in their pipe and smoke it (or whatever).
Glad that you got approval, and file away this info for future reference
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luce, I’ve been following your Verzenio story, and am relieved that the meds were finally approved! [How shameful of LilyCares to make you go through all the ups and downs and sideways and inside outs for life sustaining medicine. What is it that Lily actually cares about? Talk about a misnomer!]
At any rate, I’m very, very glad for you.
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Whoo-Hoo!!! We dance on!!
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Luce, I'll chime in with everyone else......wooo hooooo!
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Long live LA LUCE! Alleluia! praises go to her and not Pfizer.... our little Cesar!
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I don’t think I can take credit for this one but the timing was uncanny. My oncologist’s pharmacist called me on Thursday morning to tell me that after all the possible escalations and reviews, I’d been conclusively and finally turned down by Lily Cares, because me getting the medicine in the first place had been a mistake on their part. (Their rules exclude all Medicaid patients.) I asked him what had actually been said in the actual conversations he had had with the bureaucrats and pharmacists at Lily Cares who reviewed my case and repeatedly voted down my re-application. (These are people I hadn’t been able to access as a patient.) He didn’t really answer that, but I kept pressing that’s while legally they were technically right, someone should please call them and make a strong ETHICAL argument. I had not defrauded Lily Cares; both my original application and my renewal application clearly stated I was a Medicaid patient. They made the mistake to approve me twice. So while I was grateful I’d gotten the medication for two years, I felt it was unethical to stop supplying it to me upon their discovery of their own mistake, particularly since I’mstill responding.
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