Disclaimer, I am writing for my Father, and he has ALL PH+, but this seems to be a great forum and figured I could hopefully be pointed in the right direction. My Dad has been on Dasatanib 100mg, q.d, for 12 years. 2 months ago he had 2 heart blocks that caused lose of consciousness. Pericardial and Pleural effusions showed up 2 weeks later. Pacemaker was put in as A fib was starting as well. BCR ABL has been at <.01 for 12 years, he did HYPER CVAD/ Dasatanib front line, and was one of the first to do so with ALL ph+. He stopped Dasatanib after both pericardial and pleural effusions set in. Has been off Dasatanib for 6 weeks. BCR ABL went to .04 at 4 weeks. then to .08 at 6 weeks. He reinitiated 25mg of Dasatanib 3 days ago when we got the .08 results back.
Thus so, I am very familiar with Dr. Clarke and all the amazing cessation docs in the UK who are working with CML, but we cannot find any that are working with ALL. We are willing to fly anywhere in the world if needed, as we feel a bit on our own on this. The docs at MD anderson are helping, but its been a process and I am reaching out for another physician on the team to aid in in the cessation/desecalation aspect. We are fully aware of the toxicity of the drug, and taking it in the manner of the previous 12 years is not an option, nor something that is wanted. Thank anyone in advance for any advice or leads to physicians to see concerning this. I feel the right physician would love to help as there is little data on patients stopping any TKI with ALL ph+, and my Dad is willing to go for it. Thank you again. This is an amazing resource, I wish there was one for ALL.