New Mpn

[Nannyallison]

Ive been diagnosed with MPN for 2years now. I see my consultant every 4 months. Ive had some symptoms such as bone /joint ache. I have a lack of appetite and have lost 4+ stone. Im on a watch and wait with the consultant. What are they watching and waiting for

[Mazcd Partner MPNVoice]

hello Nannyallison, the majority of treatments for ET are aimed at managing symptoms and reducing complications: the risk of blood clots or bleeding complications, and if you don't have any symptoms when you are first diagnosed a 'watch and wait' approach is taken, which does involve regular check-ups and blood counts, your haematologist will review your blood counts at each appointment, and discuss with you any symptoms or change in severity of symptoms that you are having, he/she will then assess whether or not you need to start any treatment. Your overall health is assessed as well as your blood counts, and this is what they will base it all on, they are checking your platelet levels and your white blood cells, an excess of platelets and white blood cells may cause blood clots (thrombosis) and if your consultant feels they are too high and that you may be at risk of a blood clot they will discuss with you whether or not you need to start any treatment. What you must remember is that everyone is different in the way that they are treated and what medication they take, some people with low platelets with risk factors and symptoms may be on medication like Hydroxycarbamide and aspirin, whereas someone with high platelets may not have the risk factor of blood clots and not suffering with any symptoms and therefore won't be taking any medication, other than possibly aspirin. Best wishes, Maz

[Nannyallison in reply to Mazcd]

Thank you so much for your reply . I understand much more clearly now . Thanks . Allison

[Hidden]

yes i have been on watch and wait situation for over 2 year im 64 so considered high risk. also have leaky heart valve to add to things ,so im now due to start treatment on 28th Sept. havent lost weight, my joints ache but then have had that since my 40s with Athuritis . They go by the rise in platelets, and rest of blood results regards Holly

[Nannyallison in reply to Hidden]

Thanks . Its so reassuring to hear others experiences.