Community Champion
Posts: 8,325
Registered: ‎26-10-2015

Re: Palbociclib

Hello Maggie ( again)
I think I read that NICE are reviewing Ibrance again in June with the drug company. There is another new one licensed in us called KISQALI ..it's a lot cheaper and so maybe with a bit of competition now Ibrance will lower the price .
I've been on letrozole like you since October 2015 and know that it might stop working very soon ...
Member
Posts: 21
Registered: ‎10-10-2016

Re: Palbociclib

Hi Jo,

Your post has given me some hope then that I may still be able to somehow access palbociclib. Please could you give me the name or trial number of the trial that you're on?

Kind regards,

Maggie

Member
Posts: 2
Registered: ‎01-04-2017

Re: Palbociclib

Hi  

This is odd because I'm on my trial with Palbociclib and Letrazole (and Tasalisib). I was on Letrazole for a year before starting the trial. 

Member
Posts: 2
Registered: ‎01-04-2017

Re: Palbociclib

Hi 

I'm 52 with two sons,..like your daughter. I wanted Palbociclib, and managed to get onto a trial. I researched options and took a suggestion to my oncologist. She then got the ball rolling and contacted the Royal Marsden. I had to pass a number of health tests and meet criteria, but I have shown it can be possible. I will lobby my MP,

Member
Posts: 21
Registered: ‎10-10-2016

Re: Palbociclib

Hi Barbara, 

Thank you for your post, I will happily contact my MP to request his support in this debate. My situation is similar to Claire's in that I am unable to be prescribed Palbociclib on the NHS and not eligible to be included in current trials as I have been prescribed Letrozole since October 2016. I do not have private health insurance and to purchase privately seems prohibitively expensive.

I feel so sad that there is a drug with proven efficacy available but out of reach for most of us to whom it could make such a huge difference.

Kind regards,

MaggieMac

Member
Posts: 2
Registered: ‎19-03-2017

Palbociclib

My daughter Claire Molyneux was diagnosed with secondary breast cancer two years ago. She is only just fifty and has two teenage children. She was told by her consultant that pablociclib has been proved to be effective in prolonging the effectiveness of other treatments and is being prescribed privately. Its availability on the NHS was being reviewed by NICE last week but despite a huge petition started by Claire it was rejected. Claire has now enlisted the help of her MP, NIck Clegg, who now hopes to lead a parliamentary debate on this. Could you please please ask your local MP to contact Nick Clegg and give him their support. Could you please also share with me any thoughts or experiences you have with regard to palbociclib. My thoughts are with all people in a similar position to Claire and their families.