@birgitr I had my MPN Specialist appointment today. Lots to tell you.
I was with her for 1.5 hrs. She was excellent. Very knowledgable and informative, so different to my current haematologist. I am going to switch to her care as I don't believe I've been properly managed.
I need to get a few more tests done. I had asked my haemo why I didn't need a BMB and he said because the blood test clearly showed ET Jak2 so no need. I have read many examples of people being misdiagnosed. The specialist advised that the BMB will confirm the subclassification, provide a good baseline for the future and show if there is bone marrow scarring. I will book in for one with sedation.
I also need an NGS blood panel which tests a bunch of other genes which could add to your diagnosis and change your prognosis. A bit scary for sure but as well as ensuring you're being treated for the correct disease, I believe it's better to know what you're dealing with either way.
I am also getting an ultrasound check on my spleen.
My risk for thrombosis is something I have always questioned with my haemo. As he had a number of around 1000 platelets before I started treatment, (my result in April was down a bit, 884), I always wondered if waiting this long was ok given my age and heart risk factors. My haemo maintained that the 100mg asprin rendered half my platelets helpless so my sticky platelets were basically halved but I always wondered how they can be sure of that when mine hadn't been tested.
So there is something called the IPSET thrombosis scoring system which she used today. Based on all my risk factors, I was classified as high risk for thrombosis which equated to 1 in 30 at risk of having a thrombosis episode. As I am high risk she recommended I take asprin twice a day, (am currently on 1 a day), asap to manage the platelets and lower my risk. I need to get my blood checked for clotting first to ensure I will be ok to take asprin at this new dose. She wants me to start HU asap, which will be after the bone marrow test. Her plan is to start me on HU first, to lower my platelets as it works faster, then make the transition to Interferon once my risk is lowered as it can take up to 3 months before seeing a reduction.
I feel relief that I now have someone guiding and informing me of what I need to do and finally have a plan of action other than a wait and see approach. It is a bit worrying to know I am high risk now so I am eager to get all the required tests done asap and start managing the disease with my treatment plan.
Hope all is going well with you. How are you going with Interferon? Any side affects? I hope you are still feeling well. Are you seeing any results?