Palbociclib with fulvestrant for hormone receptor-positive, HER2-negative, secondary breast cancer

Living with secondary breast cancer Treatments and medical issues
1

Hi all,

My name is Sukhi and I work in the Policy team at Breast Cancer Now.

I’m looking to hear from anyone who has experience of the treatment palbociclib with fulvestrant for treating hormone receptor-positive, HER2-negative, secondary breast cancer.

This treatment is currently available on the NHS through the Cancer Drugs Fund but is now being reassessed by the National Institute for Health and Care Excellence (NICE) to see whether it can be made permanently available on the NHS for future patients. I want to hear your views on the drug to ensure our work is informed by your experiences.  

If you can help, please do share your story or get in touch at policy@breastcancernow.org by 4th March 2022.

Many thanks,

Sukhi

2

Hi Sukhi

At the moment I don’t have experience of this treatment but I am due to.start it tomorrow!  I am quite nervous about it but hopefully it will be ok.

I will let you know how I get on if I can before the deadline.

Best wishes

Windflower

3

Hi all,

Just a reminder that we are still looking for people with experience of palbociclib with fulvestrant for treating hormone receptor-positive, HER2-negative, secondary breast cancer. If you are interested in sharing your experience of the treatment, please do get in touch at policy@breastcancernow.org.

Many thanks!

Sukhi 

4

Hello,

I am due to start this treatment April 21st and will share my experiences if you still need more people.

5

Hi, I have been on palbociclib and faslodex since Aug 2021, feel fine on it, I am still on the highest does, 125mg. I am also on zoladex, since Oct 2018. I’ve had 2 primaries since Dec 2014, and now extensive bone mets.  Achy a lot, otherwise feel fine.  I am hoping to stay on this combination as it suits me as I am still able to work full time.  I have had ct scans, Nov and Feb but they were unable to tell if there was healing or not so put me onto pet ct scans in March, some bone healing and others active, bit mixed. 

I have just had a pet ct scan today, results next week.  Fingers crossed for stable if nothing else, otherwise there is talk of moving to Xeloda tablet. 

Claire 

6

Hi all I’m on palbociclib and fulvestrant , my bloods were low today for my treatment and my doctor wants me to wait another week to repeat the bloods for my treatment, I feel that to long , since I had my treatment stopped through the Covid for 4 months and then my cancer came back , I feel I don’t want to delay treatment, I know a week isn’t long but I had week rest on this treatment already. Has anyone else experienced this many thanks