If one is triple negative can a BMB confirm any MPNs and also any mutations if it didnt comeup in blood tests?
Does a BMB result also give you percentage of fibrosis and its future pace ?
Is progression necessary with time in MPNs and transformation? Example if platelet counts are 500-700 fluctuation would this count cross 1000 soon? Or it can stay like this for longer times ?
What progression/ tranaformation can a BMB show exactly other than fibrosis?
Looking for experienced answers and info pls
Written by
Aojai
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Oddly, we all tend to follow different paths of progression of our diagnoses.
I know you are seeking a more precise answer from us. Ideally, you will get the best information from a MPN specialist. However, by checking into this website often you will learn so much from the contributors
The BMB is a useful tool but it is not a crystal ball. It gives you a (very useful) snap shot. I don’t think even the most expert of MPN experts would be prepared to predict the pathway and time frame of either platelet counts or fibrosis.
In the past seven years since I was first diagnosed I’ve seen periods when my platelet counts have trended upwards and long periods when they plateaued. With drug intervention they have finally just come within normal limits having fluctuated a bit around the boundary. I’ve also seen my HCT levels climb resulting in a change in diagnosis from ET to PV. And a second BMB in which any signs of fibrosis which appeared in the first BMB were no longer apparent. And of course all my other counts, anaemia, fatigue, itching etc etc have also fluctuated over the years.
I’ve learnt not to try and second guess how this disease will progress or not progress. My aim is to keep healthy and clot (and bleed) free. And I want the disease under control as best possible. That’s why regular monitoring and appropriate management is so important. If something is up, I want my Haem team aware and on it! Hope this helps.
Im awaiting bmb results , it is confusing to read that ET and MF can be dificult to predict even thru bmb , fibrosis is another issue
Whatz the difference between pre fibrotic MF and primary MF ?
I had mixed jak2 results from 2 labs my hemo didnt wanted to do jak2 again and insisted on bmb which ws done and and awful painful expenrience, if im triple neg could it still be ET or chances of MF high i only have high platelets 500 to 800 and im 32 ,hemo says take aspirin every 2 days and also take raw garlic...
I want to attach screen shots from members of this forum who wrote percentages of transformation to MF in case of diff mutations with ET and MF cases
I also read in a thread that low risk ptients are future high risk patients, so the progression is expected as a must and no way of remission or cure just treatment ?
I was originally diagnosed PV on the strength of low EPO and high Hct, further tests twice resulted in a Trip -ve Genetic response. Finally Bmb came back negative so I am now re-labeled just Polycythemia or Idiopathic Erethrocytosis. Suspect Ig response to allergy as anti-inflammatory medication seems to help a lot.
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