Have secondary MF with mega splenism though it gives me little to no problem apart from making tying shoes up without feeling SOB. Have had BET inhibitor trial mentioned. Consultant didn't know what it was but seems a better alternative to spenic radiation. Don't criticise my consultant as he is not a specialist but is open about what he knows or doesn't and I trust him implicitly
Anyone taking a BET inhibitor?: Have secondary MF... - MPN Voice
Hi Skodaguy, yes, there is a BET inhibitor trial being organised in the UK, but if enlarged spleen is your concern, have you/your doctor considered Ruxolitinib which seems to have an excellent and proven record in spleen reduction? Also, you say that your consultant is not an MPN specialist, in which case would it not be advisable to find one who is, if only to take a second opinion as to the best option for your medication? You don't have to leave you current doctor but an MPN specialist can provide certain reassurances, which is important, and the two doctors can work together to find best options for you.