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PCT refusal

Hi all

My local PCT has refused a swap from Nilotinib to Dasatinib.  Even though I have become glucose intolerant and have increasing cholestrol levels on Nilotinib.

Family history of diabetes and heart problems to boot !!!!!!!!!!!!!!   The suggestion is extra medication for these - BUT dasatinib is the same cost as Nilotinb - extra medication will mean extra cost.  Oh silly me did I expect the bean counters to make sense - guess the funds come from different purses !!!!!!!!!!!!!   Oh the ongoing frustration of having CML and dealing with NICE and PCTs.

ATB

Pennie

Hi Pennie

Sorry to hear that, I assume you are going to fight (and win!) - let us know how you get on, we will all be backing you

Kx

Pennie, how ridiculous these decisions are, as if it isn't already bad enough having CMl. Yet another post code lottery. Can you & your consultant appeal this decision with exceptional funding? 

I have been on Dasatinib for a week now and I must admit to feeling guilty that i have been able to swap from Nilotinib with apparently no problems with my PCT (yet?).... I was looking forward to comparing notes with you as well! 

I wish you all the best with (another) fight.

Ali

Pennie so sorry to hear that.  I have no doubt that you will kick some PCT butt, but what a nightmare.

It has been one battle after another for you but if anyone can win this you can!!!!!!!

Speak soon and sending love and strengh to you

Lynn x x

Dear Pennie,

get in touch with Kate Spall who is expert at getting people through exceptional treatment appeals. She has won over 200 cases so far and is very committed.

I think you might take them on because I have just heard from NICE that the FAD for IM intolerance is delayed yet again..so this might be an opportune moment. Maybe your PCT is expecting the FAD any day now and that is why they are refusing dasatinib in the hope that you will eventually fail nilotinib and save them even more money. As far as I am concerned no news from NICE is good news.... and the longer they delay the more I feel they might be in the process of doing a U-turn.. but then that might be just wishful thinking on my part.

You can find Kate Spall's contact details on the Links page... thepamelanorthcottfund.org.uk

Best.... Sandy

Hi Sandy

Does that mean we won't be getting any news next Thursday now?

 

K

Hi Karena, yes that is what it means... we will not see the FAD published until further notice!

Sandy

Pennie,

So sorry to hear of the latest setback. I only hope that this is a temporary set back. I am sure that you don't need this hassle but keep fighting.

 

Please let me know how it is going.

best wishes

Susan