Abemaciclib Verzenio for Stage IV
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Hi All,
Update, still trying to get back to 100%. Feeling MUCH better but it clearly takes time to get this out of your system. I have been off for almost five days, still have mouth issues, some nausea (although much, much less) and cramping in my stomach. Today full on watery diarrhea at lunchtime. It makes me seriously wonder if we need to take this drug every day to be effective.
I’m also wondering if access to the drug is going to be a problem. I arrived home today to a letter from my extended health insurer advising me that they declined my application for coverage of the drug - get this - because I have already received a prior endocrine therapy treatment and had received chemotherapy. Uh, say what? That’s exactly the requirement for a recommendation as a single agent. Will advise MO tomorrow before letting Lilly know. They may continue to cover my drugs regardless as we try to argue with the extended health provider.
It’s been an interesting time of reflection for me as I try to figure out the balance between possible incremental benefits in terms of longevity and quality of life. I know my circumstances are different - overall good short term prognosis given the length of time between my original diagnosis and stage IV and the fact that I don’t have much family - but I feel I suddenly have a better understanding of the ethical dilemma that oncologists grapple with every day. So many unknowns and so much potential damage from any of these drugs.
My next step will likely be a dose reduction if I still have access. If I feel equally crappy? That will require some soul searching as I simply couldn’t function with so much nausea.
Hope the rest of you are doing well.
Pat.
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so, pat, i'd say get back on, but at a reduced dose, and stick it out. i had shit-my-pants diarrhea for a year, and i also for the first few months hated the taste of food, was nauseous, and i'd already started out very skinny so got railthin. but so what? verzenio pulled me back from the brink of death. and after the first few months, it became the easiest cancer drug ever, even with continued diarrhea (which did go down to a few times a week rather than eight times a day). i have zero side effects now (haven't had any all of this year) but unfortunately/inevitably, it may be quitting on me. still, i wouldn't concentrate on the GI shit but just power through. i am very confident your symptoms will become tolerable (maybe even go away) on reduced dose. dose reduction was the key for me. a year later, i bumped it up to may again without any issues.
my insurance turned me down, too. i got on lily's patient assistance program. very easy. your oncologist will help with that.
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Hi Luce,
Well that’s good news. So the nausea and taste issues resolved after a couple of months? I understood the diarrhea would wane but figured the nausea was another matter. Powering through a couple of bad months is doable. Living with it indefinitely is a bit more daunting.
Pat.
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my guess is you'll do much better right away on a reduced dose.
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Hope so. While I didn’t have as much trouble with diarrhea the nausea was brutal. I suspect irritation of the stomach lining. I can trade a couple of crap months for the boost Verzenio provides but buy some extra time with months of misery? That would be harsh.
Of course, I’m coming from a place of doing well otherwise at the moment. One’s perception changes when things are going south.
I appreciate the words of wisdom. Stay tuned.
Pat.
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Sorry Luce. One more question. What doses were you on? Definitely haven’t given up as I figured I needed to give a lower dose a shot. Even without the GI issues I have my suspicions that my hemoglobin was going to tank on 200 mg. (Hematocrit below normal after 2 weeks. That’s how things started on Ibrance.) so it was only a matter of time...
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I started on 200. I’ve berm back on 200 since January. In between, I went down to 150 for most of 2018.
If I were you I wouldn’t overthink this but try a lowered dose. You’ll probably do fine
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take it with a meal, preferably fatty, if you’re worried about your stomach. I always take it on an empty stomach to this day because I don’t eat breakfast, and the morning dose still makes me mildly nauseas because of that. Not a big deal for me but I’m guessing avoidable if taken with or after a meal.
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Luce, thanks for your insight. I mean this in a very nice way, but its hard to imagine Verzenio becoming an easy drug after a few months, haha. But it is helpful to hear and gives me hope. At this point I've been on it seven weeks. The food issue is weird. I will eat something, say pizza, then when I look at a slice later, I get nauseous. Same with most everything else, I tolerate it once, then can't stomach it. Went to a wedding reception. Was quite hungry; nibbled on cheese and crackers then could barely eat any items from the buffet: chicken, noodles, potatoes. No robusto appetite. I miss that. And, at this early part of the game, who's to say if Verzenio is even working. Can't tell.
Sadie, your dilemma about taking meds vs life quality is understandable. It sounds like you take time to think things through. I wish you the best in your choices.
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I may be finding some relief in the food department. I read that cold foods are often more appealing if you're nauseous, and I'm finding that to be true. Apparently, the smell of warm food can be a turn off, that's why the cold food helps.
Applesauce, jello, cottage cheese, popsicles, chips and salsa, even a small slice of a cold sub sandwich are some foods I can nibble on and not have them turn my stomach. It's a big help, because I would be weak from not eating but so many foods turned me off. Now I can eat enough that I don't wake in the middle of the night starving. When I'm out, I like to get a small chicken sandwich at KFC.
I'm also going to try making iced coffee as my usual one cup of morning hot coffee usually goes untouched these days.
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Good to know about the cold food.
I’m still waiting to restart the meds. Communication with my MO has been challenging lately. He’s generally very responsive so I suspect he’s dealing with a lot right now and access to this drug is a bit convoluted. I find it unnerving to be dealing with the pharmaceutical company directly as ultimately it is still my MO that needs to request the prescription. Lillyplus reached out to them yesterday so hopefully I will have answers and lower dose pills next week.
Thankfully Lilly will be providing me with the drug while we appeal my extended health insurance provider’s decision. I’ll be interested to see how the drug impacts me at a lower dose. It took a week for all the side effects to resolve including the diarrhea.
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hope you’re able to get the coverage needed SadiesServant. and that the lower dose helps.
Luce: it is great to read experiences from someone who has been on this drug for over a year. Were you on Ibrance first before with progression? Did your lung mets improve after Verzenio? Did you have lymph nodes with metastasis also?
I received compassionate access to Verzenio. My extended health declined me but it was due to an error of a missed box in the application by my MO. Hopefully that was the case anyway. Reapplying for special authorization coverage again
I am on day 4 of 100mg as of Nov 4. Cramping is my only side effect so far. It is bad at times. I am curled up in a ball in pain as I type this
Tips I have received elsewhere to reduce diarrhea etc:
- avoid dairy and spicy food.
- take with food
- know that the first few months are the hardest and then body should adjust
really hoping that this drug works. Not doing so great in the cancer symptoms front.0 -
I've been in Verzenio for 21 months. I'll quit this group because I may need to quit Verzenio soon, and I'm frankly finding it upsetting to read how repetitively folks complain about GI side effects while not even having tried a dose reduction first. I was dying when I started Verzenio and I'll probably quickly get back to that shitshow once off Verzenio, so, yes, it's all relative. But I also know from being in FB groups for a long time that most women find Verzenio very tolerable once they figure out their dose.
I was never on Ibrance. I do have medistinal lymph node mets.
All the best to everybody on here!
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hope that you don’t have to quit Verzenio soon Luce! 21 months is awesome! My Mets are also in the mediastinum. It sounds like Verzenio shrunk those for you? I’m hopeful it will workas they are affecting my esophagus and airway
I personally will live with the cramping if the drug works! Was started at 100mg because I was on the lowest dose of Ibrance. MO was being cautious.
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I went from suffocating and being days from death to reasonable (for slow walking on flat ground) lung function. So, yes, it helped. It took about four months for me to notice I was getting better but that’s because I had been so ill when I started. My lung function has been declining again for the last 6 weeks. Very upsetting.
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To be sure, crampsand diarrhea can be brutal. I had grade four( meaning four times a day or more) on full dose down to once a day on reduced. That lasted for a year. Cramps were very painful but short-lived/resolves by bowel movement, so that was okay for me. Chronic diarrhea gave me fissures and hemorrhoids, so wasn’t a walk in the park, but nothing compared to suffocating. After a year, no more diarrhea.
Strong black tea might be worth trying. I’m a coffee drinker but recently had a black tea phase and noticed that it was constipating. Might have been useful when I had diarrhea.
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Luce were your mediastinum nodes under the trachea? Subcarinal I believe is the term?
I’ve never had my lung function tested. I wonder if I should be doing that.
I will live with the cramps. Hoping I’ll get away with no diarrhea. Today is day 4. Fingers crossed.
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I don't think my lymph mets interferedwith breathing; my lung mets did and are again. My point is Verzenio shrunk my mets enough to improve my breathing. I don't think there's a point in comparing locations; if one responds and mets shrink, the function that those mets impaired may improve. I'm going to leave this group now; I don't think there's anything I can contribute anymore that hasn't already been addressed.
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Ashlyn, are you still on the 100 mg dose? I am on it now for two months along with Aromasin. Do you take iVerzenio alone or with an AI?
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Hi All,
I thought I would provide an update as I realized that I hadn’t posted for over a week. (To be honest, this seems to be an uncommonly quiet thread considering the subject. Ibrance was and continues to be very active. So what’s the story with Verzenio? How many of us are actually on this?)
So, started again at 150 mg twice per day 12 days ago. The side effects have certainly been better but still not hugely fun. The nausea came on slowly and is nowhere near as debilitating as at 200 mg. It has increased over time but I can still function thankfully. Mornings seem to be the worst. I’ve lost my taste again, a side effect which also came on slower. I think this contributes to the sense of nausea as food tastes terrible. Diarrhea is still evident with one loose stool per day and lots of cramping but this is manageable.
I’m planning to hold steady until Thursday when I have blood drawn. Several of my counts were low two weeks after pausing treatment so it will be interesting to see what it is doing now. Then I am considering dropping a bit lower to resolve the nausea. Stay tuned!
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I have been on Verzenio for over 3 months. I'm also being treated with Faslodex and Xgeva. I typically have 1-4 bouts of diarrhea/day, but it is manageable with Immodium. It also varies, depending on if I have to take pain meds or nausea meds. I have only recently had issues with nausea and vomiting. Zofran is my new best friend. I have had some hair thinning on me legs 😊, and in my nares which leaves me with a constantly running nose 😞. My nails have slowed In growth and I have a couple that have begun to detach the past couple of days. My fingertips feel engorged - like they might explode! I typically have a positive outlook with an occasional blue day. Today is a good day. — My profile doesn’t seem to be saving my most recent diagnosis. Stage IV with mets to mediastinal lymph, bones and liver.
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I've been on Verzenio for 8 months so far, 100 mg twice daily. That's after two dose reductions due to extreme diarrhea. I still have sudden-explosion day about once a week and I take imodium when it's a problem. Verzenio diarrhea doesn't seem quite so bad after the total body wreckage that was Halaven (hellaven, as I call it), and before that, sitting in the chair weekly for two years of Taxol and neuropathy and baldness. Pass the toilet paper.
My tumor markers didn't budge for the first four months on Verzenio and then they began to fall. September and October were extremely stressful months for me because my father was diagnosed with widespread end-stage colon cancer and I was caregiving for him in the hospital. My markers rose during those two months (not surprising). He passed away in my arms at the beginning of this month, a mere 50 days after his diagnosis. My oncologist re-did my CA 27-29 this week, two weeks after his funeral, and they have begun to fall again. All that to say, extreme stress and grief and sadness really take their toll. I am convinced that cortisol is candy for cancer. Y'all stay peaceful out there.
My main SE aggravations currently are nightly muscle cramps and chronic bladder burn that's been going on far too long. It's gotten worse lately and it's beginning to impede my ability to function. I'll see a urologist for a cytoscopy soon. My gut tells me that Taxol probably scalded my bladder lining causing a bladder ulcer. I haven't heard anyone else complain of this SE so I could be totally off-base.
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Hi Lulubee,
My condolences on the passing of your father. That must have been incredibly difficult, particularly given what you’re going through. My thoughts are with you.
I admire folks that have been on this treatment for awhile. It seems to be fraught with challenges. My blood looked pretty good (surprisingly) so I am continuing on but did decide to drop to 200 mg per day. Nausea seems better and so far no diarrhea today. But, the latest issue is my mouth. It’s been getting more and more irritated and my old standby, baking soda rinse, doesn’t seem to be working anymore. So, Cancer Agency has prescribed something they call magic mouthwash. It’s going to take some getting used to! Hopefully it will show results and maybe, I will get my taste back! Here’s hoping!
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lulu, my condolences on the passing of your father. Fifty days from diagnosis to his passing, so sudden! Neither of you really had time to catch your breath.
I'm about 2 1/2 months in to taking Verzenio and for the first time, my thoughts are going to that place where I'm wondering if it is worth living. Not all day long, but sometimes I have rough patches of nausea and body aches and am not sure I can continue. Zofran has some odd effects on me, I think its that serotonin uptake which doesn't work well for me. Peptobismol seems to be what works somewhat for nausea tho I can't always count on it.
However, hearing you say, Lulu, that it took four months before you saw a drop in tumor markers gives me incentive to stay the course awhile longer. My onc doesn't do tumor markers; I will do scans in February.
Sadie, these are my personal thoughts on why the Verzenio thread isn't as active as the Ibrance thread. Many women on Ibrance are new to the mbc diagnosis. They're getting Ibrance as a first line of treatment and have many questions and are seeking support and insight. I think there's a bonding there that occurs with those entering treatment for mbc.
With Verzenio, many of us have been at this mbc thing awhile, have done various lines of treatment and are all at different phases of dealing with mbc. We know the support is here when we need it, but we've gained valuable insight over the years and developed additional forms of coping. I know when I was on Ibrance a few short months, although the Ibrance ladies where kind, I felt a bit out of place because I’ve been at this awhile.
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Divine, my oncologist told me when we started Verzenio that she wasn't even going to pay attention to my markers until 4 months had passed. She said it's a slow starter.
I'm sorry you're having so much trouble with it. FWIW, I've had a rough start with every line of treatment (V is #7 for me). With most of them, SE's seemed to ease a bit after the first month or two. (Well, except for Halaven. For me, the torture accrued on that one, though I am told it is less toxic than Taxol for many patients.)
The SE protocol in the Phase III trial for Verzenio called for what was referred to as the "superpink" formula of Pepto Bismol. It was given WITH Imodium at full dose, along with a robust probiotic morning and night. For me, the probiotic makes a huge difference. I also take a prebiotic fiber gummy every morning which seems to help as well. I take Imodium on sort of a schedule now. I take 2 tablets on Sunday mornings whether I have loose bowels or not, because I want to make it through church and family lunch without a disaster, and then I take another dose midweek when I run errands. I usually take the typical Imodium tablets that are sold in the US, but I discovered that in the UK they come in an "instant melt" sublingual tablet which works-- no kidding-- within minutes. I order those on Amazon to keep in my purse for more social emergencies. They are pricey but totally worth it when I'm out in a store and feel my whole gut beginning to churn.
Hope you can find your place with it soon.
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Also thank you all for your kind condolences about my father's death. I am a Daddy's girl and this is very, very hard. Especially hard to see him die of *cancer*, and so suddenly, after I've lived with it for over 12 years. I miss him.
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Oh dear lulu, I can’t imagine what the upcoming holiday season will be like for you just having lost your dad. My sister’s father-in-law also passed away earlier this month: we will see them on Thanksgiving Day and check on how they’re doing. Do you have siblings to experience this together?
As far as my treatment goes, I have been on a very tolerable Verzenio 100mg twice daily dose for a year now, along with Faslodex and Zometa which has been reduced to quarterly. Diarrhea is pretty much controlled by two FiberCon (generic=calcium polycarbophil) tablets every day. Tumor markers have come down nicely. Anemia, fatigue and depressed white cell counts have me doing less while avoiding crowds & their infectious organisms.
The biggest question right now is my lung status. Beginning with the first PET scan following the initiation of this therapy, some diffuse cloudiness has been seen. Follow-up chest CT imaging with and without contrast demonstrated persistence. With the recent FDA warning, I added pulmonology to my list of specialists. Since I remain asymptomatic, I’m reluctant to change meds but we’ll see...
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I second luce. You will feel completely normal (but low energy)with some random diarrhea with certain food. My mouth soars were never gone. I have chemo mouth for the past 8 months. Also severe rash from time to time that stays with me for a month. Its rash from hell...
Have Tom's close by all the time.
It saves you, Do not stop the med. Results are undeniable in most of us
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i would try slippery elm for mouth sores. drinking as tea may help protect gut.
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Hi All,
Heard back from my health insurance provider today. Denied access to Verzenio for the second time. I have no idea how this will impact my access to the drug through the compassionate access program. I should hear back from Eli Lilly tomorrow.
It’s somewhat ironic given that I finally feel that I have landed on a manageable dose. If cost is a concern, I may be able to stretch out the pills I currently have. MO indicated he thought my strategy was reasonable, suggesting I might even go down to every other day. Let’s see how much I need to play with this...
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