Waiting on Bone Marrow Biopsy Scared...

[pgleason210]

So I haven't actually been diagnosed yet, but my Doc suggests polycythemia, Jak 2 was negative by CBC, also EPO was normal, white blood cells normal just my HCT and RBC and Hemoglobin always seem to be high. Doc ordered bone marrow biopsy and now im waiting for the results... The more I read the more I start to worry about possible leukemia and lymphoma. What are the chances of those with just symptoms of polycythemia?

[Cathy426]

I recently went through the same. I started going crazy waiting on the results. The only thing that helped me was the power of now by eckhart tolle. Don’t worry ahead like I did because it’s no good for you

[Belgobrit72]

I had abone marrow biopsy 10 months ago. Got a call that they had found incidental myeloma (15% whatever), was sent for lots of extra tests, xrays and scans to see if any damage to my bones and went into panic mode. Was all clear, doctors decided myeloma was smouldering. 10 months on I have an extra blood test every 2 months, no increase in abnormal cells ( had actually gone down last time) and starting to think that this might have been there for years and might just stay like that for the foreseeable future. Fingers crossed your results are good.

[Paul123456]

My very limited understanding is that WBC rises as you transit towards MF and then everything falls when you get MF.

Sounds like you have PV if anything. Again, my very limited understanding is that progression risk to MF is significantly reduced if you are JAK 2 -ve.

So please don’t worry unnecessarily. Have you had the BMB yet?

[Mazcd Partner MPNVoice]

Hi we can all understand how worried you are whilst you wait for the BMB results, it can be a very worrying time, but the best advice is to wait until you have the results, then once you know you can move forward. Maz

[idi75]

My high RBC and Hct was found in a routine blood test 4 years ago. I was also found to be jac 2 negative with the other significant gene mutations also negative and EPO normal. Like you my other blood cell counts are normal. My Hct is kept below 0.45 by venesection, now only needed about once a year. Initially my haematologist diagnosed ‘Polycythaemia - cause unknown’ but now describes it as ‘secondary polycythaemia - cause unknown’. Tests were done for secondary causes but none have been found. I keep well and only get a bit fatigued from having low ferritin levels which slows down the red blood production. I’ve never had a bone marrow biopsy as my Hct is satisfactorily controlled but should my cell counts deteriorate I suspect this would be done. Try not to worry, although not knowing the cause of the high red cell production as long as it is controlled it doesn’t necessarily cause any problems. Good luck with your bone marrow biopsy results.

[Belgobrit72]

Seems to be changes in the light lambda chains. All a bit of a mystery to me, was down from 235 to 207 at last check.