HI I am rather shell shocked after having had a real charade finding out my recent VAFF results I wont go into this as it has been painful with tests going missing, and then earlier my local specialist only having half the story on the results which she shared with me, but wasn't sure quite whether they were correct or not!!
Anyway after all of this, the specialist in my local team has advised that the VAFF reading is 77% JAK2, which I fear is rather high. I know that this may always have been the case but 7 years in, I pushed for this test to be done. It is not routine in UK you see.
I still have v little info other than it's not necessarily linked to partic outcomes, progressions or symptoms but obviously common sense says that this is not necc 'good news' and I have read recently that more than 50% result, gives more likely indicators of progressions and risk of thrombotic events etc.
I am due to go on a long awaited holiday this weekend, which is abroad, with people I don't know that well, and so I am annoyed that this has now been sprung on me right at this moment, when I had my initial sample taken at the start of July. My head is spinning trying to digest the info and what the implications may be.
After 7 years aspirin only, I had already started to feel that it was time to start taking meds such as INTF, and this may now give more weight to that decision to do so of course - I hear that meds can often be successful in bringing the allele burden down.
I feel sick with the confusion of it all tbh, esp as at the start of the appt it was looking so positive in outlook, my whites and reds stable, and the platelets at around mid 700s lower than they were only 6 months or so ago, they were then around 1500 mark. I also have had results of bone marrow biopsy, which showed no signs of MF or other disease progression, only what is already expected with having had the PV.
I hope that this message is not too garbled, I am in a state of confusion, and don't know where to turn for further advise especially as we are entering into the weekend - so of course, your shares and input are really valuable at this time.
Sending each and every one of you healing vibes and love on this roller coaster ride.
Thanks, Sarah