Hello there @DougyW, hope you don’t mind me commenting but I’ve been intrigued by this talk of allele burden when living with Polycythaemia vera ('PV'), which I do like you. I also have a JAK2 gene mutation.
I try to attend blood cancer conferences and watch lectures by specialists in Myeloproliferative neoplasms ('MPN') and then share my notes on the forum. Back in 2024 dear @Rammie18 kindly shared this online lecture which may be of interest to you too: Now part of the polycythaemia vera posse - #116 by Rammie18
I note the specialists in the lecture shared that; “Having a higher allele burden, above 50 %, means more likelihood of progression to Myelofibrosis ('MF' or 'PMF') or other rarer MPNs”: Now part of the polycythaemia vera posse - #119 by Duncan
Doesn’t exactly help in terms of knowing or tracking our overall allele burden, but unless we have a high allele burden we are still at low risk of progression according to these specialists. My allele burden at diagnosis was, I believe, around 1 %.
I suppose an option if you’d like to know your allele burden going forward would be to test for it privately, I know other forum members have their main treatment and checkups via the NHS but can have more detailed tests done via, Bupa, for example. Unsure as to prices for this.
I see dear @Ceri_BloodCancerUK and Nurse Emma have shared advice that I cannot better and would say do give the nurses at Blood Cancer UK a call if you’d like to speak further about the clinical side of your query.
Oh and I’d be very interested in what you learn so do please share here @DougyW.