Thanks again for the responses. Having already got the stem cells drawn off and in storage …The £30,000.00 figure sounds about right, we will earmark some funds for this as “Contingency”
I don’t want anyone reading this to be alarmed ..I am NOT saying that any funding for anything has been stopped. But all treatments for any drug or treatment have to be approved… (By Nice I assume) ..So, its not just any old treatment willy nilly. I am reacting to a comment by the Consultant that they are experiencing “Some problems in getting funding for third Stem cell transplants, some get approved , some don’t”
This could depend on all sorts of factors including the patients health as well as just funding issues and cutbacks etc..So I just wanted to be informed and ready …IF we hit this hurdle.
To answer PeterP’s question ..Why is so much made of SCT ” ? … because its generally regarded as the Gold standard treatment for Myeloma ..IF it works and is appropriate from you.
Its important for us as SCT has worked really well for my wife, better and longer lasting than any other treatment…and we’ve (she has) had a few !! ..this 2nd SCT- giving us over two good years (we are now 6 years in from initial diagnosis) whereas Velcade was much less effective (and I know that was expensive !).. So brilliant that you got 4 years from it PP – Outstanding !! …….
So its very much horses for courses and finding the treatment or combination that works for you.
Right now my wife is on a maintenance dose (10mgs) of Revlamid per day (3 weeks on 1 week off)and that (fingers crossed) seems to be holding the wretched paraprotiens at bay.
Onward ……thanks again and best of luck to you all as you fight the good fight