Hi fellow MPN'ers,
After 21 years, my time of low risk primary myelofibrosis has come to an end. In the middle of last year my haemoglobin level was 104g/L and now it is 88, moving me from the low risk category to the intermediate risk category. The drop in haemoglobin level has been quite noticeable. Previously I had not really noticed changes. Still in very good health.
My haematologist referred me for splenectomy, however I have declined for now. I still consider my spleen to be my friend. My spleen was extended 6cm past the costal margin at the time of diagnosis (20 cm by ultrasound) and is now 16cm past the costal margin (so guess that would be a length of 30cm).
He also raised the prospect of SCT and discussed my changes with his collegues. The group feeling is that it is too early for SCT. I have mixed feelings, however today I am quite happy to defer the SCT decision to another day.
The revised care plan is to increase the frequency of my visits to 3 monthly and continue with the daily 1g HU and aspirin. The next trigger for review is becoming transfusion dependant.
All the best on your MPN journey, cheers Simon