After many weeks and numerous phone calls and emails we still do not know if Rob has been granted funding for nilotinib. However the consultant at our local hospital, having got fed up of waiting, has decided to prescribe it anyway saying a precedent has been set when the pct funded it for one other patient last year.I'm not sure what happens if the pct then refuses funding but we'll cross that bridge when we come to it. Rob starts treatment on Tuesday next week, but isn't really looking forward to it as he's felt so much better these last few months without all the drugs in his system.
Sal
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Nilotinib funding
Dear Sal,
your consultant should be congratulated ;o) If the pct refuses funding retrospectively then you must fight.... local media has a magical effect on PCT's. But I am sure that Robs doctor is right. fingers crossed that you will not have to cross the bridge!
Please reassure Rob that many side effects of imatinib are not there with nilotinib...as I am sure those who have tried both drugs will assure you.
The other options with a diagnosis of CML should be remembered. when this disease ramps itself up to the more active stages then 'feeling better' disappears from the vocabulary. I was diagnosed in accelerated stage and after some months (before I managed to get on an early phase ll trial of STI571/imatinib) I was really feeling unwell. CML can fool you in its initial chronic phase.... it remains a viscious disease without the right therapy. We are very fortunate to have such a drug that saves the majority of CML patients lives. But there are many CML patients throughout the world who cannot get access to this or any other effective therapy.
There are also many in England (as opposed to Scotland and Wales) who cannot get access to 2nd Generation TKI's. That is why Robs consultant should be applauded for his action.
best wishes... I am sure Rob will find nilotinib easier.
Sandy