I was diagnosed with CLL 12 years ago. WBC' s have been rising year after year, I am finally to the point where doubling time is 6 mo - time to treat. I visited MDA for a workup. I am Trisomy12, unmutated, NOTCH1 positive, which is not a good prognosis, although the report said "mutation was present at a much lower mutant allele percentage (<3%) compared to percentage of cll/sll cells (87%)". Not sure what this means?? My MDA doc told me 'no chemo', treat with Ibrutinub. I was hoping my local Onc would agree with the expert and start me on Ibrutinub - but no. He wants to speak with me "face to face" before treatment. He does not like Ibrutinub - claims it has lots of nasty side effects. I'm thinking he'll want to start me on BR instead. So here I am, waiting to start treatment and I'm not sure what to do. I should mention that my local Onc didn't know the significance of NOTCH1 positive. I read that Rituxamab is ineffective for those with NOTCH1 positive. Any suggestions would be greatly appreciated. There are very few, if any, onc's available where I live.