I was wondering if many people have had their blood tested for several of the mutations that might drive progression and what their understanding/experience of it all is? My doctors said the science around NGS and MPNs is still a little fuzzy but that it's worth knowing about certain mutations, particularly ASXL1, as they can contribute towards overall prognosis.
My results came back on Monday and I think they seemed pretty good. My Jak2+ allele burden is 40%, which I think is higher than average for ET but still on the lower end of the scale. Does this change with time or remain pretty stable as a rule?
They also said there were no other mutations to worry about - again, this sounds very reassuring, but could this change at any moment? (whenever I hear positive news I just want to breath a sigh of relief and get out of the room, so typically forget to ask these questions!).