just a quick update on what's been happening with Rob since I asked for advice at the end of November. Zavie and Sandy your advice was as usual spot on. He is still off Dasatinib the plural effusion has improved but not cleared altogether yet. His heart is still enlarged but seems to be functioning normally. An application has been made to the PCT for funding for Nilotinb and we expext to hear if it was successful in about two weeks. Rob feels so much better for his break in treatment and is pretty much back to his old self. His PCR remains at 0.4 it has hovered around this level for nearly two years so we are hopeful that Nilotinib will help him acheive MMR.
Thankyou so much for all you good advice
Sal
You are here
Dasatinib and heart problems
Hi Sal,
MMR is a great goal to achieve. There is new evidence (Dr. Druker) that says being stable at CCR for several years is as good as achieving MMR or PCRU. Too many doctors believe that it is important to reach PCRU, even at the expense of the patient's QOL.
Rob's PCR of 0.4 is probably CCR. A BMB would confirm this.
Enjoy the break,
Zavie
Hi Sal,
MMR is a great goal to achieve. There is new evidence (Dr. Druker) that says being stable at CCR for several years is as good as achieving MMR or PCRU. Too many doctors believe that it is important to reach PCRU, even at the expense of the patient's QOL.
Rob's PCR of 0.4 is probably CCR. A BMB would confirm this.
Enjoy the break,
Zavie
Dear Sal,
I am glad that Rob's heart problems have improved and that his pcr is still very low. Please do update here when you have news of the PCT's decision on funding nilotinib for Rob.
fingers crossed.... but in my opinion you should not be forced to go through this in order to prove his 'exceptionality' for access to a life saving drug.
Sandy