Abemaciclib Verzenio for Stage IV
Comments
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Woodland, I completely agree about eliminating stress where we can and enjoying the life we have now. Great sentiment.
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Tumour markers are so interesting. Despite that fact that I have pleural mets and extensive bone mets, my TMs have never been very high. Now, they have been rock steady at 37 for the last year or so on Verzenio.
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Hi ladies....
I am wondering if anyone that is taking Verzenio is having success that have previously failed Ibrance??
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Nicole - I switched because of issues with ANC. I had tumor reductions on ibrance that continued when I switched to verzenio. Verzenio supposedly has better activity on visceral tumors and can cross the BBB, but other than that activity is similar. Side effects differ. You can look for articles but it doesn’t make sense to switch from one to the other if the first fails. Given that, they sometimes cycle these inhibitors. If they work and then there Is progression. A person may go on to another treatment or two and may cycle back to a CDK 4/6 inhibitor later. There has been some success
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Hope ...yes that is what we are looking to do....cycle back ...since I know did IV chemo and may get NED....if I do...then we will give Verzenio or Afinitor a try.
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ok. lets try again. Nichole I've tried three times to congradate you on your tumors great response. That's fantastic and I'm very happy for you. about cycling. I started on a hormonal , alone, that was the beginning of my treatment. Then it failed' On to ful/ibrance, worked for three months and then failed. Onc wanted me on IV Taxol to lower tumor load. Taxol worked great but Onc took me off cause neurapathy in let leg was getting too bad. On to Zeloda, which just held cancer at bay for 8 months. At slight progression. I started A/A and it appears to be working although no scans yet. Also, I haven't had any side effects. So cycling is a real possibility.
sorry for typos, afraid to fix and lose everything.
Nichole, we started off on wrong foot. I'm so willing to start over, if you are.
Sue
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Snooky its all good lady!
. Thanks for the info on Cycling back to endocrine therapy...I put a post on FB asking if anyone that failed Ibrance/Let...and then went to either Verzenio or Afinitor had any success..and they have...more had it on Afinitor...but hey I was happy to hear it! 0 -
Thank you Nichole, you're very gracious.
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Good to hear from you Snooky, I've been thinking about you. I wish you success in the latest treatment.
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Thank you husband! So, far A/A is treating me good SE wise. haven't scanned yet.
Wish you and yours well also.
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Hi Snooky, Husband and Nicole. Hoping Verzenio works for you guys, and everyone else of course. I will be changing treatment as I had Guardian Blood test done and the cancer genetics have changed, I'm now Her2+. Moving on to Herceptin/Perjeta and some other pills, don't remember what they are and hadn't heard of them. Get my first treatment on Thursday.
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Wow Goldie!!! I think that is great...people on Herceptin (if they respond) can live like 20 years!!!! Best Wishes to you! I cannot believe they saw that from a Guardant blood test! Goldie you are bone mets only right? No liver or organ involvement?
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Correct Nicole, bone only that I know of, haven't had scans in over a year. I'm not real big on them and they don't cure you! Nor do I have any pain that would associate with any organ involvement. Heck, I don't even have any bone pain! Maybe a tad in my hips if I bump them.
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Hi Goldie. It's interesting that you are now HER2+. I wonder how often that happens? I've heard of a few that have become weakly HER2+ so perhaps it's worth a shot for many of us as we run through our options.
Wondering why your MO is changing treatments if there are no signs of progression. Are you no longer ER+? You had such a good long run on Madame X. I'm all about trying to squeeze as long as possible out of any treatments so am clinging to Verzenio despite some indication there has been minor progression in the bones...
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SS, as far as I know I'm still ER+ PR+. I too want to squeeze every little bit out of every drug. As far as I know, the only progression I have is in the bones. The change to Verzenio was due to my TM's markers making huge strides! But the Verzenio didn't help that. So it makes me wonder if it's because of the Her2+.
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Goldie...I think now I know why you got so LONG on Xeloda.... because of the HER2+...it may always have been there very very low.... because I see HER2+ people go on Xeloda and do well....
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Who knows Nicole, what works for one, doesn't always work for the next person. I'm just thankful to still be here and feel as good as I do.
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Goldie, good to hear from you. Your experience really emphasizes the importance of having a biopsy after a treatment failure. My wife has started on verzenio, after 3 + years on ibrance. Her tumor markers are rising, and we are giving this switch a try. Oddly, and quite fortunate so far, she hasn't experienced any side effects yet from verzenio. Goldie, did you have side effect from verzenio, in particular the nauseau or diarhea after making the switch? If so, when did it come on?
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Husband, I didn't have a biopsy, it was the Guardant360 blood work up. My TM's were taking great strides. Verzenio wasn't too bad, occasional nausea, diarrhea was the worst. Metamucil helped with that. I had several accidents, thank goodness they were at home, and since it's like water, there really is no stopping it. Several months into it, my hair started to fall out and still is, so it's quite thin. Very watery eyes, so I keep tissue on me at all times so I can just dab them, instead of rubbing. I was rubbing my eyelashes off! Wishing your wife a good run on V. I'm just so grateful that we have several options to run through.
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That is frightening to hear how rough the Verzenio was on you Goldie. I was hoping you were going to tell me that you didn't get many side effects, as I wondered what switching from one cdk4/6 inhibitor to another would trigger. I was hoping it was less, as they are both cdk4/6 inhibitors.
How long after starting treatment did it take for the diarrhea to start? My wife is 3 weeks into verzenio, and so far no problems. But we aren't really sure how much later it might occur. The first post on this thread, by Zarovka, says that the median time to onset of diarrhea was 6 days.
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Hi Husband,
After three weeks it sounds like your wife is among the lucky who are not going to be overly impacted by the big D. I also fall into that category although I do have it occasionally. I can go for a couple of weeks and then suddenly will have a couple of days in a row with issues. No rhyme or reason to it.
I did find that the incidence increased about 7 or 8 months after starting but more recently haven't had too much trouble. Likely there is a relationship with diet as I have not tried to avoid vegetables, etc. Bigger issues for me is the impact it has on my mouth. I have ongoing problems with mouth sores/irritation which can get really bad if I eat anything spicy. I had a cycle of steroids to deal with some issues related to my skull base mets and that really stirred up the mouth issues. Still struggling to get it back under control.
Hope Verzenio continues to be kind to your wife!
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I just started Verenzio, 150mg 2xd. My onco prescribed Colestipol 1gm to be taken with every Verenzio pill with the expressed purpose that it is suppose to completely eliminate the diarrhea side effect. Has anyone here had this combo prescribed? What was your experience, please? Thank you! (Edited to correct mg's)
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Husband, I think the D started when my MO upped my dose from 100mg to 150mg. I don't think I had any problems that were too bad on the 100 mg. I found these SE's easier to deal with than the H/F syndrome with Xeloda.
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Hi Ladies and Husband
Well I made it through the first week of versenio feeling pretty good.... then POW the dreaded diarrhea! After being miserable for two days I took Metamucil and wow what a difference. Thanks to all of you who offered up that information. It’s a game changer. goldie0827 I wish you well on your new meds. Isn’t it great that we have options. All of you are my rock so you stay strong and I will follow... I’ll check back a bit later.
kathy 🌻0 -
excellent KathyLou - I was able to get off prescription diarrhea meds - which did nothing to help and now I only need an occasional Imodium. 2x/day metamucil is a game changer. I don't know about drug interactions as metamucil acts "mechanically" but for caution I take the metamucil at least 2 h after the verzenio to be sure its not washed away with the metamucil. I don't know if necessary but I just take the precaution.
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I'm pretty sure the Metamucil label says to use it at least one hour before or two hours after medications. Is guess it's in general terms, but it seems reasonable.
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SeeQ - It's exactly what I (try to) do as a precaution. Especially since I am on other meds too.
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aznetrook - No, I have never heard of this. I do see that it is being tested for use in bile-acid malabsorption diarrhea. Not sure what the side effects may be? It's a cholesterol lowering agent. Let us know if it works. I was happy to get off meds for diarrhea and take the metamucil. Trying to keep side effects of meds to a minimum for QoL. Metamucil works mechanically and once you have taken a few doses and your body is used to it, it's easy and it's been a game changer for me.
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Hopeandgratitude, I hope that didn't sound as if I was trying to contradict you. I was just suggesting the 'before' option. I am not keeping a regular schedule (waking/eating), plus I'm still having little appetite, so timing tye Verzenio with a meal and Metamucil 2x a day is challenging for me.
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seeQ- Not at all! We have to figure what works best for each of us. The before option gives us an option!!! I have used that too
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