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Been to see my specialist results and more tests.

Posted , 4 users are following.

julia15874
julia15874

Hi all, well great news no tumors and lungs and kidneys fine, so those tests are done. He's now thinking primary again unfortunately, so today I've had a JAK exon 12 mutation gene done, I've had a erythropoietin blood test and another full blood count. After they are back depending on the results He mentioned a red cell mass test (what's that?) and a bone marrow biopsy too. Julia x

0 likes, 4 replies

4 Replies

  • keith28441
    keith28441 julia15874

    Posted

    Hi Julia

    With regards to a red cell mass test, it is carried out to measure the amount of red cells and plasma levels in your blood. If you have had any venesections recently, this test would not be carried out until at least 4 weeks following the venesection in order that an accurate analysist can be carried out.

    Without going into detailed specifics, it involves you being injected (usually a vein in your arm) with a radioactive tracer. Following the injection a blood sample is then taken, again usually from your arm. This sample is used to test the plasma levels. To measure the red cell mass, I believe they may take a second blood sample (I could be wrong) and they do what is known as “labelling” some of the red blood cells with a radioactive material (Chromium -51 I believe). These “labelled” red cells are then re-injected into your arm and after a short while another blood sample is taken in order to then measure the red cell mass in your blood.  The process takes around 2 hours. Don’t be alarmed about the radioactive tracer, it’s a small amount and has no lasting effect. In short, it’s about the same as having an x-ray examination. It’s non- toxic and from what I understand, you shouldn’t feel sick or drowsy should they decide to undertake this procedure.

    Decreased plasma volumes with a normal red blood cell mass would possibly indicate “relative polycythaemia”, which can be related to severe dehydration, even stress. So I guess they will want to cover all bases and investigate this amongst other things and do the bone marrow aspiration if the current tests come back negative. At least they are prepared to go to great lengths to get to the bottom of your diagnosis Julia. Great news though that you have no tumours or problems with your lungs and kidneys so that’s a positive to hang on to. I do however, hope you get the answers you are looking for soonest.

    Hang in there

    Kind regards

    Keith  

    • julia15874
      julia15874 keith28441

      Posted

      Thank you Kieth, I've had no venesection, I don't think he wants to until he's a firm diagnosis incase he does more harm than good, and im feeling more confident were getting somewhere now. I will wait for my test results and See if it's PV, or Polcythemia secondry course. It's a long process of elimination! Xx

  • ellen68007
    ellen68007 julia15874

    Posted

    The news is awesome! you are almost there. The waiting is always the hard part. I had no idea there would be soooooo many tests done before a firm diagnoses. However they have to be certain before a firm diagnoses and be made. Good luck in the rest of your upcoming tests.
    • julia15874
      julia15874 ellen68007

      Posted

      It's great Ellen, nearly there it's road if elimination, but my specialist is doing everything he can and I feel more confident in him x

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