I am on a revisit of CDK4/6 (Kisqali after Ibrance several years ago). Just started and it is intended as a place holder so we'll see. Let me know how it goes with you. I had a scan yesterday and the results aren't great, so he might tell me this isn't the time to experiment. We'll see. I so want to avoid IV. I think what is next is Enhertu. I just started Kisqali so hopefully can give it a bit of time to see...
Sorry--I realize this isn't exactly encouraging. I snooped around when we decided on Kisqali and have seen women who get quite a few months on a CDK4/6 revisit. My sense is one doesn't get the several years that can happen when it's a first line therapy. But it can kick the IV can down the road...
I live in Northern California and am in the UCDavis health system. I really like my oncologist.
We have to just keep pushing forward. I’m so resistant to IV Chemo but know it’s coming. So frustrated thinking about hair loss, as I feel on this chemo treatments I will never get hair back once it’s gone, because I’ll be on chemo for the rest of my life. Not like your on chemo for a few months then your done with it.
Someone I knew had to go on IV chemo pretty quickly since other meds didn't work. It did a good job for a few years so she went on a maintenance dose and her hair came back. Fuzz, but no longer bald.
I went on Verzenio + letrozole/anastrozole after Ibeance and fulvestrant. I had a great run on the latter, NEAD. On Verzenio. I got a year of stable. Not as good but something. I don't know about Verzenio alone. It is generally harder than the other targeted therapies. My 2nd opinion dic ar MSK said she would have tried Kisqali next. It is more effective and has fewer side effects. I did try that next, nothing, but I was probably ESR1÷by then.I would hope you can try Kisqali instead of Verzenio.
For all of you afraid of IV chemo, I am now on Xeloda, oral chemo. You don't lose your hair. Supposed to be good for a couple of years. I don't know yet if it is working for me. Signs are not good. If not, Orserdu.
Tammy, I was on Xeloda for about 9 months, it was very tolerable. then moved to Orsurdu (the latest treatment). Orserdu did not help me. Thus next trying the Verzenio.
We just keep fighting and praying for new discovery of treatments.
DinNorCal and Pbsoup and all, I know a woman on another MBC discussion board who did well on Ibrance / fulvestrant for 5 years . Had progression and switched to Affinitor /Aromosin and then xeloda . She is currently doing GREAT on a clinical trial , which is a cdk 4/6, a cdk 2 and fulvestrant. So, this is her second time on a cdk4/6 (but with the cdk 2 added ) . Trial is currently recruiting at UCSF .
Trial number is NCT04606446 , she refers to it as a Kat6 / CDK 4/6 trial and I believe it is a Pfizer trial .
Hello DinNorCal, I did Ibrance for about 3 yrs and the went to Verzenio for another 3 yrs , They seem to last so long. Now I am on Orsertu for about 3 months, We will see what happens when I go for my CT scan. Try the Verzenio and see. Helena I have MBC in my Liver.
That’s great results you had with Ibrance and Verzenio. I just finished Orserdu with not great results. Hope you scan shows Orserdu is working well for you. Did you have serious diarrhea with the Verzenio? I had bad diarrhea with the Orserdu.
I’ve been on Verzenio with Letrozole since September. It’s been ok, but not as good as Ibrance . Things are starting to wobble a bit, my next scan in August should tell the story.
I have read in some study that having a break from CDK 4/6 Inhibitors can 'reactivate' them and they will start working again. when I asked my oncologist about this he just said it was not 'allowed' under NHS rules, so I guess if i want to try, ill have to self-fund.
I share your fear of IV too. I had progression from bones and lungs to liver. biopsy showed PIK3CA mutation so i am now on Piqray.
I think there is one more oral treatment I could have before IV. Capecitibine, or something like that.
I really hope i can stay on oral until a new oral drug comes along
Laskia, I hope you get a long run on Piqray. I got about 9 months on Capcitabine and the side effects were minimal. Only a little redness and soreness in feet. And some fatigue. Be sure to use a lotion (with urea) on feet and hands, definitely helps with the hand and foot syndrome.
hi I used Verzenio for 12 months after I had an allergic reaction to paxlataxil which collapsed my lung, this was to be used to clean up anything that may have been left behind because I couldn’t complete my chemo . Verzenio was very strong and lots of side effects so dose was dropped by half. During my last month I started have bad reflux and after have scans of my liver it was found that the cancer had returned and spread to my liver, spine and pelvis. I had a few symptoms that Dr thought were just side affects of Verzenio but unfortunately were not. All I can say is listen to your body and push the Drs if you don’t feel right. Good luck on your journey.
Schlinky. Thank you for the insight. My oncologist is starting me on the lowest dose of Verzenio (50) twice daily, as I had bad diarrhea with my last treatment which was Orserdu. Hoping this does minimizes the SE.
I had acid reflux with the Orsedu and it was nasty. Thankfully it has mostly cleared up
Did the Verzenio decrease any of the progress? Or did it do nothing?
Sorry you have progressed. Hoping the next treatment will have some effect and fight off those cancer cell progression. Do you know your next treatment medication?
Hi I had to have Verzenio after my mastectomy due to not being able to finish paxlatacil a a maintenance dose. I had stage 4 breast cancer with 8 out of 16 lymph nodes removed full of cancer. They were positive they got it all and the Verzenio was just supposed to be a maintenance dose to make sure but unfortunately it didn’t work and by the time they discovered it was bake it was everywhere and they have given me approximately 3 years to live. They can’t work out why it didn’t work for me. I’m now on gemcitabine and carboplatin for 6 cycles and after only 1 cycle my markers have dropped by over half which is awesome. Hopefully Verzenio works for you. Good luck I have everything crossed for you.
I am about to start on Verzenio since Ibrance and letrozole failed after seven good years. I must say I’m a little nervous about it due to the nausea, stomach cramps and diarrhea comments I’ve seen. Hoping for the best. I also live in Northern California area and go to Kaiser Permanente for treatment. I would love to hear how you’re doing on Verzenio.
I have been on Verzenio ( lowest dose-50 mg twice daily) just over a month.
At first I had some diarrhea and a little upset stomach and sometimes some nausea, but the diarrhea and nausea has lessened. I now just have some fatigue and not much diarrhea that Imodium takes care of pretty quickly. Every few days I may get some nausea and I will take Ondanastan for that. Now the Versenio seems to be pretty tolerable. I believe the lower dose has been helpful in controlling the diarrhea. My Oncologist says the low dose works just as well as the higher doses. Hoping the best for you. I live in NorCal too, about 45 minutes from Sacramento.
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