Yesterday I got my results from PB PCR and BMB PCR done on Jan 2nd.
PB PCR 1.315
BMB PCR 0.135
Cyto and FISH both negative
Results in July
PB PCR 0.479
BMB PCR 0.000
Result in October
PB PCR 1.250
This bobbing about is getting to me, and I am begining to despair of getting a steady level. Side effects keep me on 500mg, but perhaps its time to try a higher dose again.
If you can hear a great scream its me expressing massive frustration!
Pennie.
hi pennie, thanks for your encouragement -post below-
i know just how you must be feeling with your pcr's back and forth like this.
i also know you have had ongoing problems with side effects over quite a few years... so my question is ... why not try tasigna/nilotinib?
you can still get on an ENACT trial, which in my opinion would give you the best monitoring you could have, or get access because you are obviously intolerant/resistant to glivec.
leeds and dublin are already open and i am sure the other lead centres will be following shortly.
i have heard very good things about this drug regarding efficacy and side effects, even though it targets the same pathways as glivec, i really don't think you have much to lose.. and maybe you have a lot to gain?
love to both you and bill,
sandy C ;o)
