Verzenio alone: I was wondering if... - SHARE Metastatic ...

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Verzenio alone

DinNorCal profile image
34 Replies

I was wondering if anyone has used Verzenio after Ibrance and Fulvestrant have failed? I did get a couple good years on the Ibrance/Fulvestrant

I am ER+ HR- and have used all my hormone treatment options and am facing IV Chemo. However my Dr. says Verzenio may be an option.

‘Thanks for any encouraging insights.

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DinNorCal profile image
DinNorCal
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34 Replies
Pbsoup profile image
Pbsoup

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...

Where are you treated?

DinNorCal profile image
DinNorCal in reply toPbsoup

Pbsoup

Thanks for your reply. I appreciate the input.

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.

Thanks for listening 💕

Pbsoup profile image
Pbsoup in reply toDinNorCal

The hair thing is real! Plus I do t want all the side effects. I ride horses and really don’t want to give up.

Keep be in the loop on how it goes!

P

TammyCross profile image
TammyCross in reply toDinNorCal

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.

NShaft profile image
NShaft

Have you had a recent liquid biopsy? There are new meds for the ESR1 and PIKA3 (?) mutations. I am on Orserdu for ESR1 and it is pretty easy.

Salmon4 profile image
Salmon4 in reply toNShaft

Hi Nshaft

I just started Orserdu. How long have you been on Orserdu? And have you had any side effects? I think this is my last choice before IV chemo

Thanks

NShaft profile image
NShaft in reply toSalmon4

I’ve been on it since March 2023. Very few side effects. Fatigue is the worst for me.

TammyCross profile image
TammyCross

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.

DinNorCal profile image
DinNorCal

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.

Aprilfoolz1 profile image
Aprilfoolz1

 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 .

DinNorCal profile image
DinNorCal in reply toAprilfoolz1

Thank you Aprilfoolz1, I will do some research on that 👍

Aprilfoolz1 profile image
Aprilfoolz1 in reply toDinNorCal

I know Davis isn't super close to SF but I'm really happy this trial is going well , more options for us in the near future (I hope ).

Pbsoup profile image
Pbsoup in reply toAprilfoolz1

thank you! I will ask my doctor about it.

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.

DinNorCal profile image
DinNorCal in reply toIwouldlike2knowmore

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.

No I was fine with both, How long where you on Orsertu.

DinNorCal profile image
DinNorCal in reply toIwouldlike2knowmore

I was only on Orserdu about 3-4 months. 1st scan I had after starting revealed progression. Just not the right treatment for me.

Iwouldlike2knowmore profile image
Iwouldlike2knowmore in reply toDinNorCal

DinNorCal, This is my 3rd month and on August 8th I will get my CT scan. Let you know how things went.

DinNorCal profile image
DinNorCal in reply toIwouldlike2knowmore

Yes, please let me know how your scan turns out. Hoping the very best results

Nocillo profile image
Nocillo

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.

DinNorCal profile image
DinNorCal in reply toNocillo

Here’s hoping Verzenio helped, and you have good scan results. 💕

Do you know what treatment would be next for you?

Nocillo profile image
Nocillo

I think Exemastane? I’m sure I didn’t spell it right. Then maybe IV chemo which I am dreading. Hopefully something else will come along instead.

DinNorCal profile image
DinNorCal

yes, pray and hope new treatments come along soon.

Laskia profile image
Laskia

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

DinNorCal profile image
DinNorCal in reply toLaskia

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.

Likes profile image
Likes

I’m beginning kisquali… along with Faslodex due to failing Faslodex.

DinNorCal profile image
DinNorCal in reply toLikes

Hoping you get a long run on Kisqali, and minimal side effects.

Likes profile image
Likes in reply toDinNorCal

Thanks!

Schlinky profile image
Schlinky

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.

DinNorCal profile image
DinNorCal in reply toSchlinky

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?

❤️

Schlinky profile image
Schlinky

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.

DinNorCal profile image
DinNorCal

Thank you. I’m rooting and praying you get many more than 3 years. So many new drugs coming out. We need them approved quicker.

Take care

gerisplace profile image
gerisplace

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.

DinNorCal profile image
DinNorCal in reply togerisplace

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.

Blessings 💕

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