Abemaciclib Verzenio for Stage IV
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Hello, Rosiet. The long time you spent with bone Mets under control is a good sign this next phase will be a long time as well.
AlabamaDee, good luck with Xeloda. It worked wonders for me. If your tumor shows necrosis in the middle and activity on the outside, that usually means is it growing quickly and cannot feed itself enough to keep up with its metabolism. The inner portions die off while the outside grows. I have seen those types of descriptions on my scans at times.
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Hi there
Has anyone moved to abema after competing a successful chemo with Abraxane with low HER2 negative ?(1+ or 2)?
Thanks
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Hello, those of you on Abemaciclib/Verzenio. Looks like I will be joining the group. Here’s a brief timeline of me and mbc: dx de novo, mets to several bones early 2011, had chemo, lumpectomy, radiation, then stable. over 8 years on arimidex. That took me to March of this year when scan showed progression in T1 vertebrae. Started Ibrance/Aromasin and now, 5 months later, scan shows progression in T5 vertebrae. Onc is switching me from the Ibrance to Verzenio but keeping me on Aromasin.
I have my doubts this is going to have any effect. Its a huge disappointment Ibrance didn’t work. My onc doesn’t want to radiate the vertebraes as I’m not in pain, and her concerns are if radiation is done now, it may not be available down the road to eliminate pain.
My first question is about Verzenio cost. Because Ibrance is so pricy and there are copay cards that Pfizer provides, how does paying for Verzenio work? I have private insurance but will be switching to Medicare for a couple months then probably back to private insurance due to dh switching jobs. Naturally, the prescription changes all happen at the same time!
I’d appreciate your comments!
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Devine- so sorry about the Palbo- I do think that Abemaciclib sounds exciting, why aren’t they changing you to faslodex as your hormonal?I’ve heard it is the hormonal that fails often. The approved faslodex is two ouchy shots in the butt once per month, but, hopefully oral will be approved soon.
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Divine,
I saw this suggestion on both this thread and on the Ibrance thread. I was on letrozole for 13 years before it failed, and I'm not on Ibrance and Faslodex (the one that's shots, not a pill). Don't mean to meddle, but I would surely ask my oncologist if you could try that switch first.
Good luck.
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BevJen- You've been dealing with mets since 2006?! Took 13 years to move to the liver?! ER-positive?!! I am in awe!!! And now just on Ibrance-Faslodex?! OK, we all want to be like you!!
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Yup, that's me. I've put this info on some other threads, but I was diagnosed in 2003 with invasive lobular (ER, PR+, HER2-), had extensive nodal involvement, had a bilateral mastectomy, chemo (TAC, all the rage at that time), radiation to my left side, went on tamoxifen in 2004. In 2006, my gynecologist, during a routine gyn exam, mentioned that I had a weird looking small polyp on my cervix. She sent it for biopsy. Talked to pathologist at that time -- he said that there was a small focus of lobular cells at the end. Everyone went into panic mode, and I went to a gynecological oncologist (who I still see for my annual gyn exam). He said that he thought I should have a complete hysterectomy and oophorectomy. Did that and went on letrozole in 2006. Thus started my experience with mets. After a year or two, I calmed down a lot, although I continued constant TM monitoring. They stayed in the normal range but for a few blips until 2018, when they started to consistently go outside the normal range. NOTHING could be found. Fast forward to May 2019 and -- boom. There were the little suckers in my liver -- 5-6 spots. Had the largest one ablated in July, trying to determine how long to wait before doing more work by an IR.
I'm a big believer, from my own story, about getting rid of stuff. Not for everyone, but it's worked for me. When I had bilateral mastectomies, I had had a small focus of cancer in my R breast that had been removed by excisional biopsy. I still took off that breast. Above outlines my story with my first recurrence. In 2006 I also had early melanoma on my thigh. It had not invaded anywhere, but I had Mohs surgery to have it removed. Now with the microwave ablation. So far it's helped me -- not for the faint of heart, but my body likes to grow stuff.
My onc described my cancer as "slow growing." I hope that is still accurate.
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I'd like to know if any of you had bad diarrhea with the Verzenio or if it was controlled with Imodium. Imwill start the Verzenio soon and have concerns of side effects. Any advice is appreciated.
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Divine Mrs.M,wishing you well with the Verzenio! I've been on 200 mg Verzenio as a monotherapy for 14 months (the Faslodex and other hormonals usually prescribed with it had failed me earlier). I have had trouble with diarrhea, and my oncologist dropped me down to 150mg for a few weeks, but moved me back up to 200. Not too many side effects other than a noisy and active digestive tract. My hair gradually thinned (not a very common side effect, I believe),so I am back with my wig,but that's not a big issue. My eyes water constantly, but I don't even know if that's the Verzenio. My blood counts have been pretty good, and my tumor markers have slowly dropped. I've thrown up only twice. All in all, a tolerable med for me. I'm thankful to have it after the ones that haven't worked well. Hope it's a goodie for you.
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Thanks so much for your insight, SchnauzerMom! Glad to hear Verzenio is doing you good!
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Hi Divine! I'm sorry to hear you've progressed but welcome to the V-train. I started in March on the monotherapy high dose (I think it was 200 twice daily?), even though I also started Faslodex at the same time. (My markers had more than doubled in the month prior, and my onc is a maximalist when things change that dramatically.) We quickly dropped to 150 twice daily due to 10 straight days of being tethered to the toilet despite meticulously following all the Phase III trial protocols for managing GI side effects (which Constantine posted somewhere here--it involves lots of probiotics, electrolytes, a specific imodium dosing schedule and "big pink" ultra pesto bismol). I did pretty okay on 150 for about four months, but I traveled some this summer and got off-kilter with the probiotics and electrolytes, and my GI tract fell apart again late last month. So we just dropped me to 100 twice daily last week.
The good news is that during the 4th or 5th cycle, my markers started dropping and they have continued to drop for the past four cycles. I'll take imodium for that.
Hope you do well on it. It's not been easy but it's proven kinder to me than Halaven was, by a mile.
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Hello Divine,
I ve been on Faslodex nearly a year and Verzinio was added 3 months ago. I was given 150mg twice a day but came out in a terrible rash head to toe and bad tummy issues. I was put on 50mg twice a day and have tolerated it very well. I am aiming to try to get up to 100mg twice a day.
Symptoms seem to vary between everybody
Good luck xx
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Hi Divine, I’m sorry to hear about the progression. I have been on Verzenio just over a year now. Today, I found out my PET scan is all clear! Istarted at 150, but now on 100s. We are all different when it comes to side effects. Usually the diarrhea is manageable, but sometimes it gets crazy on me! Green vegetables and fish seem to be the triggers for me....and some raw foods. Good luck - this thread is helpful from the beginning.
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Also, have you checked on CyberKnife for the new met? This was the easiest darn cancer treatment ever for me! My L4 was zapped into oblivion - and hasn't been back! I am still on Zometa and Faslodex both monthly. My ass is ready for the oral SERDS! I think next May the Zometa will decrease to every 3 months
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Hello Everyone,
I posted a few weeks ago that I thought I would be joining this thread and, lo and behold, here I am! Verzenio is only newly approved for use in Canada and it's still a bit of a process getting access to it. I was originally turned down as I don't fit the profile (had Ibrance briefly but couldn't tolerate the anemia, switched to Xeloda and then Faslodex which I have been on since January 2018).
My MO and I are concerned about possible progression as a recent scan indicated skull base and cervical spine mets. It's unclear how long they have been there as this is not someplace they typically scan - we only found it as I have been experiencing numbness and tingling in my right arm but that could be due to degenerative changes. My gut says it's progression but... MO ordered 200 mg twice per day which tells me he might feel the same.
All to say that we tried again and I was quickly approved. The first two weeks worth will arrive on my doorstep on Monday along with the Imodium and then I will launch into this latest adventure by the middle of the week, once we have the baseline bloodwork and any other appointments arranged. Thankfully that gives me a few days to reread this thread, arming myself for what's to come. However, any and all advice will be gratefully accepted!
Wishing you all well.
Pat
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Sadie, I’ve been on the Verzenio along with Aromasin for almost a month, The diarrhea isn’t too bad, Immodium helps. I need only one Immodium capsule every other day. My appetite changed some, I feel full quicker yet sometimes I’m so hungry but nothing sounds good to eat. I feel fatigue so I take it easy. Also some nausea so again, I take it easy. Gingerale helps with that some. I’m hoping as time goes on I adjust a bit more. I don’t have much stamina, so I pace myself, do a task, then take a break, then do another task. I try not to pressure myself into “I should be doing this” or I should be doing that. Altho I do push myself to do a little more fun stuff like dh wanted to go to a fall festival today, so even tho I didn’t feel 100% up to it, I just took it a little at a time and it turned out to be very enjoyable.0
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Divine- nice to see your post. I wondered how you were. I always have fatigue the first month or two of a new treatment. Hopefully, that will get better. I mostly wanted to say I am using all sorts of different ginger things for nausea and find it very helpful. Especially if I don’t wait too long before I take something. . Candied ginger, ginger tea, ginger chews etc.
I’m not on Abemaciclib but, read this thread since I have great faith in this drug for the future.
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Thanks Divine. You give me hope that it will be manageable. I’m still working full time but had decided that I need to scale back prior to starting Verzenio. This will likely make it a bit easier to get there (although, for me, this has been very challenging!).
Question for others, particularly those on a high dose, just how bad is the diarrhea? Are we talking loose stools or, can’t make it... Sorry for the odd question but I’m trying to figure out if I can work shorter days and how best to prepare. Do I need some of Lita’s Shittin Pants? 😉
Thanks.
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Sadiesservant, about the diarrhea ...
When I first started 200 mg Verzenio I had diarrhea between 6 and 12 times a day. Then I dropped to 150 mg for a few months, and diarrhea was probably 2 to 4 times a day. Have been back at 200mg since January and have more,but not as bad as at first. Immodium helps, but I feel bound up with it, so use it about every 3 days. I often run to the bath room, and have had only 4 or 5 accidents in almost 15 months. Mostly manageable.
I get tired, and my hair has thinned, but on the whole, a good quality of life.
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Wow. That was quick. I read median time to the big blow out was 6 days but I just took my second day three dose and, oh oh. Is that possible? Didn’t have time for the priming dose of Peptobismol. I hope this isn’t a sign. Eek!
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Loperamide worked too well - stopped me up for days, feeling awful. After reducing V to 100mg twice a day, I started using two Fibercon tablets daily to manage the bowels. The generic is calcium polycarbophil. It acts by helping absorb the excess fluid so diarrhea is avoided. Loose stool seems to show up after a meal or when I lay down to go to sleep. Things start to relax, including the smooth muscle of the GI tract and I have to get up...
I only had one 'couldn't get to the bathroom in time' mess in the past year. It was not in public but occurred when I became awake, rolled over in bed, thought I had gas and was wrong!
Everyone on CDK 4/6 inhibitors should be aware of last month's FDA warning about lung inflammation. There is another thread on this potentially irreversible complication so scroll around or search to find it. My pulmonology team thinks I'm OK to stay on it for now however that opinion could change after scans next month. CT with contrast lets the radiologists get a good look at what's going on. Be sure to report any respiratory symptoms.
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Sadie, I hope things become manageable for you. The first few weeks I stuck close to the house and good thing. My library is a block from where I live. A couple times coming home from grocery shopping, I whipped into the library parking lot to use their public restroom because I didn't think I could make it all the way home. Thank goodness their restroom was unoccupied!
Do any of you experience nausea? It seems more problematic for me at this point than diarrhea. What do you take for nausea? Gingerale and ginger snaps weren't cutting it so I bought pepto bismol which helped. I cannot take compazine as it zones me out. I saw the side effects for zofran and don't think that's for me, either.
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Hi Divine,
So, there was the one blow out and that’s been it so far although I keep reminding myself that I am only just through day 5. I have had some cramping but that’s been the extent of it thankfully. However, I do have some nausea, particularly after I eat and I have completely lost my sense of taste. I find that the most depressing as, unlike other chemo regimes, there is no break with Verzenio. I miss my glass of wine!
The other thing that has been troubling me is a scratchy, sore throat. I’ve had it since Friday (day 2) and it’s showing no signs of relenting. At first I thought I was coming down with a cold but don’t have any other symptoms. I assume it’s related to the number it’s doing on my mouth (I.e. taste). Anyone else experience that?
Thanks for listening everyone.
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Hi all
I relate to all the gi complications diarrhea, nausea, constipation and heartburn. I have tried fibercon and Imodium and comapizine. What seems to work best for me is managing my diet 6 small meals a day and when I stray I pay.
I do think the verzinio adds should show the woman running to the restroom. I am greatful for the science that is keeping me alive and with my loved ones but this is work.
Thanks to all
Mary
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Well, with any luck of being approved by extended benefits and compassionate access, I will be starting Verzenio in the coming weeks after 20 cycles of Ibrance.
Has anyone had a stable scan on this drug after being on Ibrance?
SadiesServant: I’m from BC also. Do you go to the Vancouver center or are you on the island?
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Hi Ashlyn,
I’m in Victoria. I accessed the drug through the Lillyplus compassionate program but they are looking to see if my extended health benefits will cover the cost ultimately.
I have to say, I’m finding Verzenio a lot tougher than Ibrance. The diarrhea hasn’t been that bad but the terrible taste in my mouth, inability to taste food and the nausea? Oy. I keep hoping I will get over this hump but it’s challenging.
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Verzenio seems a little rougher for me, too. I find Pepto Bismol helps me best. Imodium is too binding and compazine side effects had me zoned out and depressed in one day so I never took it again. Two Pepto tablets every other day help some with nausea and control the diarhea for the most part. I have no stamina. I get hungry but fill up fast. Then I'm hungry again but have no appetite if that makes sense. Food is not as satisfying as it once was. Lots of adjusting to this drug.
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I believe my taste buds have changed. Many things don't taste as good as I expect them to. I get hiccups often. My hair has thinned a lot over 15 months on Verzenio. Diarrhea management requires constant calibration. And I definitely agree with Divine Mrs. M--no stamina! I wear out easily. It's not an easy medicine, but not the worst, either.
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Well, we hit pause on the Verzenio. I have really struggled with the nausea. It’s not just the lack of taste. As soon as I eat anything I feel very nauseous. Even a glass of water is problematic. At this rate I will be miserable and turn into a stick insect. (Down 4 pounds in the first two weeks.)
So, my MO said stop. We’ll see if I improve just to be certain it’s the drug. When I feel better we can discuss going forward at a lower dose. Looking forward to feeling less blah for a couple of days although I am a bit worried and disappointed.
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sadiesservant: bummer. sorry to read this. I hope that you feel better soon and can go on a lower dose. Did your MO not try an anti-nausea for you?
I just found out I have been approved through the compassionate access program. They are sending the order to the specialty pharmacy next week and I should get it on my doorstep next week.
I am starting at a lower dose (100mg)
Anyone on that dosage and tolerating it OK?
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