how long to stay on ibrance after NED? - SHARE Metastatic ...

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how long to stay on ibrance after NED?

Lisa-n-AZ
Lisa-n-AZ

Hello all, I was diagnosed feb 2017. 6-Live and 2-bone Metz. 4cycles dose dense chemo an currently on 13 cycle on ibrance 125. I was luck achieved NED in Aug 2017. My oncologist has started talking to me about stopping ibrance because on the fear of long term side effects. .?? His said something about it causing bone cancer,

Does anyone have some insight or similar story? He said he does not want me on more than 24 cycles.

Thanks

Lisa

25 Replies
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Hey Lisa, I have bone and skin Mets. I start taking Ibrance and letrozole next week. Strange that it’s popular to prescribe for bone Mets but conflicts of it causes it?? I am currently doing folsadex and xgeva.

PS-not sure if your AZ is Arizona but I’m from there. My drs are in Philadelphia though.

Lisa-n-AZ
Lisa-n-AZ in reply to Snowcone16

Yes, Glendale Arizona . You are in my prays.....hope you achieve NED.

Lisa

I take a probiotic but have been doing so for years. I have IBD. Don’t notice any problems related to Ibrance.

I just started my 26th cycle of Ibrance and letrozole, last scan in December 2017 showed no new lesions, there has been no talk of changing medication at this time. I was stage 4 right out of the gate, with bone Mets thru most of my spine, ribs and hips. Side effects have been minimal, not looking forward to any change. Also get xgeva every 6 weeks.

Lisa-n-AZ
Lisa-n-AZ in reply to Boogitymom

Thank you. That was what I thought as well.....until my last appointment. I was also 4 to start. 6 liver, 2 spine. Been NED since Aug. minimal side affects. I really don't want to think about stopping ibrance! The alternatives are scary,

Keep living our dreams

Lisa

Faith456
Faith456 in reply to Boogitymom

Just started my second cycle of Ibrance. Started Xgeva in October 2018 and Faslodex in November 2018. Diagnosed stage 4, ER/PR positve/HER negative. 6 bone Mets, no soft tissue or organs. Very few side effects.

Mimiholl
Mimiholl in reply to Boogitymom

Are you still on ibrance and letrozole I too was stage 4 BBC with mets to 1 lymph node and 1 tiny spot on spine 7/16. Had 26 weeks of chemo then lumpectomy then 6 weeks radiation. I'm coming up to 24 cycles. I'm NED too. Hope to hear good results for you too.

Thanks Mimi

Ppppopp
Ppppopp in reply to Mimiholl

Hi Mimi,

My oncologist told me it’s very hard to get Ned with er posative breast cancer, are you her2+ too?

I’m always so confused with all the things they say.x

Ny oncologist will keep me on it as long as it is working. It is what keeps the microcells from growing. We are never really cured with stage 4. I have been on it about 28 months and Ned for 22 months.

Lisa-n-AZ
Lisa-n-AZ in reply to Tap321

Thanks, glad to hear you are NED. that is what I thought my treatment plans was until this last appointment. Where he said he did not want me on ibrance for any longer than 24 cycles. .?? Hope we get some updated research about long term use....

Thanks

Lisa

It’s leukemia to worry about when we completely destroy those newly produced baby white cells in bone marrow. Question is how long can your immune system be sustained if we keep killin them almost completely off??!!

Lisa-n-AZ
Lisa-n-AZ in reply to blms

Thanks, So what is the research saying?

I'm kind of in the same boat, I think It'll be my 4th round on Ibrance and I have major joint pain in my hips and knees that seems to be getting worse.

Tap321
Tap321 in reply to lynzer

I take glucosamine chondroitin and MSm for the pain. It is from the letrozole.

lynzer
lynzer in reply to Tap321

My doctor is thinking of switching me from Ibrance/falsadex to Ibrance/letrizol. I was hoping for less pain in my joints. It seems like letrizole may be worse.

blms
blms in reply to lynzer

Do you think the joint pain is from Ibrance or more from letrozole( Femera)?

lynzer
lynzer in reply to blms

I’m thinking it must be from the Ibrance or falsadex, that’s the combo I’m on now.

Lamho1
Lamho1 in reply to lynzer

Full spectrum cbd oil works for me. 2000 mg WI Hemp Scientific

I know letrozole cayses joint and bone pain but maybe falsadex more than Ibrance

As a long termer (14 years) I've know quite a number of mbc patients who have gotten years out of a hormonal treatment like one of the AIs or Faslodex before targeted drugs like Ibrance were around, so I'd certainly not get too nervous about taking a break from it. I've not heard that it causes cancer, though. I didn't tolerate Ibrance well and ended up developing Interstitial Lung Disease (in plain English, gunk between the air sacs in the lungs, for me luckily just on the very botton of the right lobe) while on it. I always suggest that people see a bc specialist onc at least for a second opinion. I believe Mayo Clinic has a facility in Arizona. That might be a place to do that, or check the website of the National Cancer Institute for the closest "Comprehensive Cancer Center." Those are the top tier of cancer centers in the country--they have to meet high standards, plus they have specialist oncs who both see patients and do research. Alot of the speakers at major bc conferences are affiliated with those cancer centers. A second opinion eval is generally covered by insurance.

Lisa-n-AZ
Lisa-n-AZ in reply to PJBinMI

Thank you. I am at Mayo. Still discussing options and hoping for more research.

Thanks for the positive feedback.

I have been on Ibrance/letrozole almost 4 years. Just had scans last week and continue to stay stable. I had bone Mets to shoulder. I also take xgeva every 2 months. My understanding is I will be on this regimen until it stops working.

Lamho1
Lamho1 in reply to Dgarrett

I'm on month 33 of Ibrance /Letrozole and hope I can stay on it awhile yet. Glad to hear you're on year 4!

Ntash01
Ntash01 in reply to Dgarrett

Hey Dgarrett

Just read your post.... one year on... are you still on the same combo? Sending hugs

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