After 1.5 years on Ibrance/Fulvestrant and a very short time in NED status (great while it lasted...) my cancer reappeared this spring. I've just had an axillary lymph node dissection, removing all the known cancerous spots, and now the question is what will be my meds going forward.
My oncologist says she wants to talk to me about several options: 1) Another CDK46, likely Verzenio or could also be Kisquali, with Fulvestrant; 2) Xeloda; or 3) Taxotere + Cytoxan which she describes as a "more agressive chemo option."
I'd be grateful for anyone who can share what they did after Ibrance, or any experiences with the above options. My onc seems to feel Verzenio would be very similar to Ibrance so might fail for the same reason - however it seems like a lot of people on here have gone from Ibrance to Verzenio? Taxotere/Cytoxan seems like a pretty heavy-duty full-on chemo so I'm wondering if Xeloda would be a happy medium?
many thanks in advance!! - LD
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Hi LDR1. I’m so sorry to hear about your progression. Are you considered Oligometastatic? I hope your new treatment works for a looonnnng time and gives you minimal or zero side effects.
Your experience sounds slightly similar to my moms as she had a neck dissection earlier this month for her lymph node removal. 23/35 lymph nodes were positive. YIKES. Her oncologist had her restart verzenio and letrozole. She has a scan next week so we are praying for no progression.
Hi Ntalley, yes I’m oligometastatic. After my initial 2014 BC, I had a 2020 recurrence in 2 tiny spots. Those were removed, one regrew soon after, and now we’ve done a more extensive surgery. Hoping that with the right meds I can have a long window of NED ahead 🙏🏼🙏🏼🙏🏼 fingers hugely crossed!! Wishing the best of recovery and strength for your mom! 💕
Hello! After Ribociclib and letrozole I was on Xeloda and it worked for seven months. Good treatment, no side effects! I was then offered Taxol, Caelyx or Aromasin + Afinitor and the last was the onc’s and my choice. I hope it works!
Hi. I am just possibly going to be starting Xeloda. It will be 8 pills a day, 4 at a time twice a day at 300 mgs. taking them for a week and then a week off. It is now in my liver and the last treatment after two months did not work. Does that seem a high dosage?
I am really so sick and tired that I do not know if i want another drug with all the side effects I have read. I was wondering if you had mets to the liver, and did it help with that.
Two mets appeared on my liver and that’s why I switched to Xeloda from Ribociclib and letrozole. It worked for 7 months. I’m now on exemestane and everolimus after a liver biopsy that confirmed my three liver Mets are 90% estrogen positive. Just started… we’ll see.
it means when your metastases are very few and very small - so there may be more options to try to remove them. If you look on google you'll see more info
My situation was similar to yours. I had a partial/lumpectomy, axillary lymph node dissection, and 18 lymph nodes removed. (Only the one that was “suspicious,” and they knew about, was malignant.) My doctor put me on Verzenio (and continued on anastrozole) for two years I have six months left on the Verzenio. I am not MBC, even though initially I thought that I was because I had cancer in the one lymph node.
The diarrhea that is a common side effect subsided after a few weeks.
Hi LD! Sorry to hear about your short time with NED. I am there myself as of March scans having been on the same combo. My Onc told me at that time whenever that first line combo stops working and there is progression he would “zap wherever it is and start me on Verzenio”. I thought to follow up on that when I saw him at my Aug scans (I was too stunned in March with getting to NED status) why he would stick with another CDK 4&6 inhibitor and if that would be considered second line treatment because it is basically the same targeted therapy. He said he thinks of it as “1.5”instead of second line treatment and that stats show Verzenio has a longer overall survival rate. So that’s the plan for me at this time. Hoping I get a lot more time on the Ibrance125 mg/Fulvestrant combo but I know you have to get yourself prepared for the unexpected. Hoping for you that you get to NED again with the next plan of attack, whatever that may be.
Working like a charm! Have been on it for 3 years next month and still NED 18 months now. Side effects have been manageable and I am hopeful that I will still get many years on it before the cancer outsmarts it and rears its ugly head somewhere. I’ll pray that you get the same results!
After Ibrance and Letrozole, I’m now on Xeloda/fulvestrant. Ibrance two years, Xeloda 11 months so far. Not bad side effects for me up to now, just fatigue and a tiny bit of hand/foot.
My onco wants me to start taking 8 300 mg. Xeloda. One week on, one week off. I just do not know. It is in my liver and the last treatment of two months did nothing and it continued to spread. She said if I do no treatment I will have 4-6 months left, and I could very well do this treatment, feel that fatigue and all that nasty side effects, and if it does not work the then I will have less time.
Not sure if I want to waste two months being sick for something that may not work, and even if it does, deal with all those side effects again. I have been any heavy duty meds and feel normal. The thought of dealing with those side effects makes me depressed.
I’m so sorry you have to make this decision. I would try it and see how it made me feel, but you have to make that choice for you. I have mets to all bone, bone marrow, and stomach. I’ve never been on infusion chemo, but I’m tolerating this pretty well. I’m sending you hugs.
I am sorry you are having to change meds. It is a stressful time. I didn't have a long time on Ibrance or Xeloda, for different reasons. I now have lung tumors and mets to the hip. The cancer that was originally in the breast has never returned since Jan. 2020. I am now on Verzenio and doing well although I have upcoming scans in September having taken the summer off. I was scheduled for a bone scan but just couldn't face it at that time. So in other words, I have been on Verzenio for 6 months now.Hope this helps.
Cheers, June S.
I’m currently on ibrance/letrezole but my tumor markers have basically tripled and I’ve lost weight. So in the meantime we are going to do something non conventional. Im going to switch to kisqali and keep the letrezole. We will watch markers to see if they decline and in a few weeks we will do scans. If there is progression we will ditch the cdk inhibitors all together and switch to aromasin and afinitor. My onco said she likes to try all of the hormone therapies before going to chemo (including xeloda).❤️ Mandy
I was on Ibrance + Fulvestrant for two years. NED part of that time. I had extensive mets when I started. For me, the fulvestrant was a wonder drug (until it wasn't). Cleaned everything up.
If it is possible to become oligometastatic, then I have. My recurrences since the extensive original mets have been one or two small spots.
Then I went on an oral SERD and was NED again for almost a year. (Isn't that great? No cancer and I felt terrific.)
Then Verzenio + Arimidex. I questioned that choice, because the oral SERD knocked out all the estrogen, so why go back to inhibiting estrogen? My oncologist, not a good communicator, said, "Well, sometimes something new works." I had a consult at MSK. She said that just because I had zero estrogen circulating 6 months into the oral SERD, it doesn't mean that I still had none after a year. She would have gone with Kisqali and exestemane because they have fewer side effects. She said, though, that they really do not have good clinical trial evidence of either one, no studies that show that either would work, just anecdotal.
The Verzenio Arimidex combo is working. One met is gone, the other is subsiding. So there you go. Meds in the same class can work after one fails.
It is so hard when they give us these choices. Why would you go to something so strong as second line? But then, why not? My oncologist usually tells me what she would do or her preferred option, so I do that. She does know more than I do.
HelloI was on Ibrence also. It worked for quite awhile. When it stopped working and it wound up in my liver.,I was put on xeloda. I had a pet scan recently and the scan showed no cancer. I hope it stays that way.
I started with a small spot in my breast but also in my lymph
nodes. That was worse. Had an operation, then radiation. This how it started about 6 years ago. Just a little background.
Wow so much hope in your post! 15 years! Or was that a typo for 5 years? Both good… my Dr saw from foundation that I might still respond to CDK 4-6 and switched me to Verzenio after just 2 years on Ibrance but I was uncomfortable and had bony pain the whole time on Ibrance.. At first on Verzenio Had the GI struggles and now good. And pain went away. But xeloda would also be a fine choice and up next for me. And I can still travel etc. I would put off the IV as long as possible.
Also they dissected you node? Fantastic… I hate having this cluster in my neck which they want in place to be a barometer.. and it did grow to 3 cm and then back to normal on Verzenio!
Hi Bettybuckets, good to hear you have had good results on Verzenio following Ibrance. Maybe I should try that sequence then Xeloda could come next. Just to clarify, I was on Ibrance "1.5" (one point five - one and a half) years, not 15 years haha. I think 18 months is about standard for Ibrance and I was right on schedule.
Oops my bad! I had the same time on Ibrance and now 4 or 5 on Verzenio. GI side effects can be rough but they can play with the dose… and it will settle. And it would be great to have more time on the pills ca IVs… but others might have differ priorities
Thanks for your note ... when you say 4 or 5 is that months or years? Good to hear the effects settled down. I agree I'd much rather be on pills than IV if possible.
I wish it was years! I have been on Verzenio since April or may. I forget. Interestingly my hubby writes medical articles for journals and is writing about ibrance( Palbo) at the moment and he asked MY advice on how to set up a table holding all the data. It will tell how long to progression on the many various 2 line choices drs have. I can’t wait to read it… the data may be from before pts were put on Verzenio after Ibrance as no pts in this study did that.
Thanks so much everyone for your replies, it’s really helpful to hear your experiences and helped me feel better informed (along with online research) going into my oncologist appointment. Looks like we’re going to go with Verzenio and continue with Fulvestrant as the anti-hormonal. Hoping it will work well woth few side effects! 🤞🏼🤞🏼🙏🏼🙏🏼
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Good to hear the effects settled down. I agree I'd much rather be on pills than IV if possible.
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