Bone Marrow Biopsy

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my husband was diagnosed with polycythaemia about 18 month ago after a routine blood test. he had 5 venesections in fortnightly sessions and he takes low dose asprin. he does not have the jac2 gene.

He has lost some weight, feels tired and very light headed and problems concentrating. Are these symptoms to be expected with this illness.THE BIOPSY is scheduled for Monday I believe they are trying to decide if he has primary polycythaemia.


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8 Replies

  • Posted

    Hello there,

    I'm a little confused.

    "Primary" polycythaemia refers to the type of polycythaemia when the test for the JAK2 gene turns out to be positive. But you say that your husband doesn't have the JAK2 gene.

    Hmmmm... An interesting case, Sherlock. 😃

    I have primary polycythaemia. The JAK2 gene reading was positive in my case, though I have never had a bone marrow biopsy to prove it. Don't know how or why.

    Yes, tiredness, light headedness, vertigo, confusion are all symptoms that I have had. Sadly, weight loss is not one of them. 😉

    The reason for the symptoms is this, I think: Our blood is making cells at a million miles an hour, but the cells, although numerous, don't develop into normal cells. They remain small and unable to carry haemoglobin and consequently oxygen around our bodies as they should. Not enough oxygen results in the kind of breathlessness you get at high altitude.

    That's why people who live at high altitude, or who smoke, can also get a kind of polycythaemia. Their bodies can't get enough oxygen either.

    • Posted

      Angela I was also diagnosed with primary polycythaemia with Jak2 as you. But i do not understand why they give venesections in UK. Dr's in the US treat high platelet count with hydroxyurea or Anagrelide as in my case. I lost my food taste on hydroxyurea . Changed to Anagrelide about a year ago and my food taste has improved some with no side affects. Sure Anagrelide is a tear 3 drug. A little expensive. vs hydroxy. But works very well for me. My platelets are 325 and i feel great.

    • Posted

      Hello Justin,

      As I'm sure you know, here in UK we have the National Health Service, which is funded by universal taxation. It worked quite well until medicine became more sophisticated and expensive. Politicians here are terrified of the words "increase taxation", thinking that it will result in loss of votes for them. So they make placatory noises at election time, offer promises that will be unfulfilled once they are returned to Westminster, and the poor old NHS limps on, trying to make a silk purse out of a sow's ear and nowadays often failing to make any kind of purse at all.

      I think that venesection might just be cheaper than drugs, in the long run, so if you are under 65 (and statistically less likely to have a stroke or a heart attack) they start you off on the cheaper option.

      I am just one of those cussed types who refuses to take drugs. I even baulk at taking the aspirin, but that's just me.

      There has been one good thing about my cussedness. The compliant folk who go along with the drugs have to be checked by a proper consultant. And the consultants, short of time and resources, are always running late, often over an hour behind schedule.. But I have been abandoned to the tender care of a staff nurse. The staff nurse has about as good a working knowledge of polycythaemia as the consultants but is always on time.

      The last time I went along, she said "your platelets are normal. For you. They're 684" We agreed that I appeared to be stable and I wished her a happy Christmas. I feel fine. 😉

    • Posted

      Angela. You said your platelets are 684 . As I understand if you never had a blood clot such as pulmonary embolism as I did .Platelets could be treated with just aspirin. My platelets went from normal to about 750 after my PE. I was put on Xarelto and a few months later my platelets started to rise. I had a bone marrow aspiration and the test came back positive that I had ET and Jak2 mutating gene. My heamatholagist said that I could have a stroke at anytime. Started me on hydroxy but as I said lost my food taste. Anagrelide was specific design for ET. It has no affect on your RBC or WBC as Hydroxy. It can give you heart palpitations. If you have a heart condition it my not be ideal for you. Fortunately at 83 my heart seams to be fine. You talk about the UK National health Services I know all about it. With all its problems ,its way better than our system. It covers everyone! In the US hundred of thousands citizens go bankrupt every year because they cant pay the sky high medical bills. Fortunately People over 65 have Medicare. Not free. But it goes along way. This is the great debate here. Medicare for all. (witch will never happen). The insurance industry and drug companies control all the politicians. And Republicans Scare people that if we get Medicare for all , we will be like Venezuela. This is the state of our politics. I can't take anymore. If I was younger and did not have my hole family living in the US, I would sure convince my wife to go live in Portugal. My country of birth. Even dough I love America ! Hopefully we can get rid of this cancer in the White House.

    • Posted

      I have the busted flush - too many red, too many white and too many platelets. I am lady bountiful. 😃

      Portugal is a beautiful country. Many years ago, we seriously considered moving to Portugal and taught ourselves some Portuguese each morning over breakfast. We learned enough Portuguese to be able to survive in most situations. On one visit, we took a small phrase book with us, just in case the car broke down or something. When it got to be time to fly home, we were standing in Lisbon airport waiting to check in. I found the phrase book in my pocket. To pass the time, I looked at the section marked "In the Airport" and found a sentence that I thought I could quiz my husband on.

      In a fairly loud voice I said "Estas malas nao sao minhas".

      A concerned airport worker came up to us...... 😃

      These days it would have been not an airport worker but an armed policeman. A crazy crazy world we live in.

      SORRY! macas02, I have hijacked your question.

    • Posted

      Angela. Your Portuguese is not bad at all. But were the bags your or not? My wife and have been in Portugal before a few times But in 2017 I took my whole family . (8 of us) for a visit .They loved it. My son and his wife want to retire there. The problem. They want to live in Cascais center. The most expensive area. Well. They have to sort that out! They can afford it! Stay well and happy holidays . justin.

    • Posted

      Hi Angela. I have more information now. Copy of letter sent to GP from


      POLYCYTHEMIA jac 2 negative Exon 12 negative.

      hb 168 WBC 7.0 Pits 266 PC 0.53

      and he still says primary.

      biopsy on MONDAY results will take a month.

      thank you for your interest


    • Posted

      Hello again,

      Well, primary polycythaemia is caused by a physical process that goes awry within the blood production system in the body itself. Nothing will make the polycythaemia disappear, it can only be controlled.

      Secondary polycythaemia is caused by factors outside the body's blood production mechanism, such as living at high altitude, smoking or suffering from sleep apnoea, all of which deprive the body of sufficient oxygen. Once the cause is discovered and sorted, the polycythaemia disappears,

      So perhaps your haematologist is now looking for some other internal physical cause, such as a wonky spleen. The spleen's job is to get rid of all the old, worn out blood cells. If the spleen stops working properly, you will end up with a load of useless blood cells floating around in the system and it might appear at first glance to be the same as an over production of new cells.

      I'm not a doctor, so this is all conjecture on my part.

      Whatever the cause, try not to worry. Polycythaemia is nowadays classed as a "neoplasm", a cancer, but it's not an aggressive form of cancer. Not at all.

      I sometimes think that the aim of polycythaemia is to bore us all to death. 😃

      Try to relax and not let the waiting get to you. Everything will be fine.

      Justin, the cases were mine , but my Portuguese must at least have been good enough to be understood. 😉

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