Hi everyone,
I was diagnosed November 2019 and initially given 100mg Sprycel but suffered immunosuppression and had several breaks and ultimately dose reduction to 50mg. I see Dr. Mauro at MSK and do really like him, BUT I’m concerned about next steps after my latest PCR came back showing a bit of a plateau. I’m officially at 18 months of treatment, but I did have several months off meds in the beginning. My last three PCR results are as follows.
.8 November 2020 (one year)
.28 February 2021
.23 May 2021
Today Dr Mauro suggested that I try 70mg for a bit to try and get me in that “safe harbor” of below .1. He was zero pressure but wanted to be conservative. My issue with trying this increase is that I’m living with immunosuppression already. My WBC has not been above 1.5 in over a year.... neutrophils hover around .8. His theory seems to be that these counts will be stable but remain low. If we get to MMR we can then go lower on Sprycel. He does not want to reduce dose until we get into MMR.
My fear is that I’ll become more immunosuppressed and this could negatively impact my PCR results. On the other hand, Dr Mauro is an expert and genuinely wants to get me into deeper response. I’m a bit surprised as I expected him to suggest we wait until another PCR result in 3 months to make any changes. I’m very confused.