Bone, secondary cancer

Secondary bone cancer is cancer that has spread to the bones from a primary cancer somewhere else in the body. This group is for people affected by secondary bone cancer to share experiences and get support.

Palbociclib

Ellieellie
Posted by

Hello

Well NHS refused drug although I am appealing. The cost to buy privately is £48,000 for a year.  Which is out of the question for me.  My private insurance will only pay for one more round as it’s their policy to stop paying for it after year which I was unaware of. So am challenging that. Feel really stressed and defeated.  I can’t believe what they are putting me through. I am on a drug that works and now can’t get it. Feel as though I have been given my death sentence.

MdeM
Posted by

I was in similar position end 2017  I had been allowed one year by my insurers and would not fund more.It became available on NHS at that time and my Consultant moved me across.  As an aside she applied in the first instance for me to go on compassionate programme but I was turned down because I did not meet criteria..

Thus perhaps NHS have refused because of criteria? There are other drugs and maybe you could go back on Ibrance at a later stage?  You could quiz your Consultant on what plan he/she has going forward.

So sorry  I can’t be more use but my thoughts are with you and I know the stress as I was on a knife edge for quite a while.

Marie

Ellieellie
Posted by

Hello

Thanks for your reply. Yes I have been refused by the NHS as I d9nt meet the NICE criteria on two scores. I am seeing my private consultant on the 24th. I will say I did not have much faith in the NHS  consultant that I saw.  I have put in a complaint to my private insurers as I was only told the medication would be reviewed after year and not stopped. So will see what comes of that.  I just cant get me head around why a medication that is obviously working for me should be refused. 

Ellie

Peebee2
Posted by

What scores did they refuse you on? I can’t believe they won’t give it to you, didn’t think they could do that once it had been approved it makes no sense at all? 

I bet your head is spinning Ellie xx 

Ellieellie
Posted by

Hello

I'm not sure which scores the NHS consultant wasnt very forthcoming. She just said I was refused in two scores and that I could put in a funding appeal which I have done but was told it was probably not going to be successful.  I feel like they have given  me my death sentence. This drug works for me and now i cant have it!   My private insurers said because it was available on the NHS they would not let me have it.  I am in discussions with them but not hopeful. It's disgusting. I don't know where to turn next, I am so upset I am crying all the time.

Ellie

MdeM
Posted by

I was refused as far as I can remember as I was only on the first line of treatment ie Exemestane which failed, but this was the compassionate programme which I think was run by the drug company while they were trying to get it thru NICE. I had just been diagnosed Mets at this point  

My Consultant works both NHS and privately so she then applied to my insurers who allowed it for a year as it was not available on the NHS. At the end she then transferred me onto her NHS list. 

It seems odd that you should have to change Consultant perhaps when you have your next private appt you could ask if they can help to maybe go to an alternative NHS Consultant. As far as info I try and research online and then take a list of questions. It helps me to keep on track.

Mariex