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Bone marrow biopsy

Posted , 11 users are following.

Zapamania
Zapamania

i was dx with Pv about 4 1/2 yrs ago based on blood work and the jak2 mutation.  I never had a bone marrow biopsy but am starting to realize I need to have one. Wondering if those of you who have had them were you awake or sedated?   What was your experience like with or without sedation?  Thanks. Zap

0 likes, 48 replies

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  • pannej
    pannej Zapamania

    Posted

    Hi

    I was diagnosed with PV 6 years ago with Jax mutation.

    I take 5000 mg Hydrox a week and clopidogrel every day.

    I have don't have any symptoms so far.

    I'm not really understanding everything about my condition I suppose and have my head buried in the sand a bit.

    Is it possible to die of old age and not from the condition as I know it's progressive.

    I'm a 63 year old female, and my haematologist in London just says carry on normally.

    I have an appointment this coming Friday.

    Any advice welcome 

    • Zapamania
      Zapamania pannej

      Posted

      Hi Pannej were all a little confused with this disease. You very lucky to not have any symptoms. I have read that with proper treatment, we will die with the disease but not from it. So the answer is yes, we can live with this disease. There are many people on this line older than you living their lives. Good luck with your appt. zap
    • peter98873
      peter98873 pannej

      Posted

      Hi Pannej,

      Yes you are fortunate not to suffer from PV symptoms and I hope it continues for you.  As Zap says, there is no reason to suspect that you cannot live to a good old age without succumbing to PV.  If your Hydroxy is stable and does not need increasing then that will be encouraging.  Clopidogrel is just like aspirin but is more generally used following surgery to maintain a good blood supply.  Your haematologist is offering sound advice for you when saying just live your life normally.  PV is a progressive disease as you say but with good treatment even this can be contained.  I would suggest that as your symptoms do not give you problems then don't think of what might be, it may never happen.  If your symptoms did concern you then you'd obviously need to know more.  Cross your bridges as you come to them - as the saying goes.  You seem to have a good haematologist so feed him/her any questions and I am sure you will get a courteous response.  These specialists appreciate it when patients take an interest in their well-being.

      Best of luck.

      Peter.

    • pannej
      pannej peter98873

      Posted

      Thank you Peter,

      It's so good to have found this thread as no one else has any idea what this condition is.

    • peter98873
      peter98873 pannej

      Posted

      Hi Pannej,

      It is very disconcerting not to be understood I agree but it is almost certainly because of the rarity of PV and the general unawareness of the disease that brings this confusion.  Even doctors may never be presented by a patient with PV and even if they in fact do so will quickly refer the patient on to the Haematologist for further assessment.  So the medics generally lose contact with the patient and at the same time fail to gain any worthwhile information about the disease, unless they remain in touch with the specialist.  I think we know more about PV now than we did 15 years ago and much of this is due to research carried out mainly in USA and UK, but it still remains something of an enigma to most people.  This is a serious disease that requires expert consideration and treatment such is its complexity and the constant variations it reveals.  That is where a forum like this one you use now can be useful with the contact it provides to fellow sufferers whom perhaps you would not otherwise meet.  Keep well.

      Peter.

       

  • BobbyO
    BobbyO Zapamania

    Posted

    To follow up on my recent post.......having all the PV symptoms, yesterday my doctor called me stating

    that my bone marrow biopsy indicates negative for PV.  The doctor had accelerated the phlebotomy,

    and last Wednesday my HCT had dropped to 45.7 and HB 15.5.  These are the lowest readings I've

    had this year (that's another story).  The problem remains that my symptoms today still include weakness,

    light headed all the time, some sporadic headaches, and very mild shortness of breath.  As I said in a previous

    post, my heart, lungs, sleep apnea, etc., have all been cleared.  My doctor is still digging (he is highly

    qualified), but my present classification is idiopathic erythrocytosis....too many red cells from an unknown

    cause.  I expect the HCT to climb again as it has in the past.  He said said that we're back to secondary

    causes, but it's a mystery.  I know that from my own research that IE occurs in about 1 per 1,000 cases. 

    Maybe there is someone out there with the same experience.

    BobbyO

    • Zapamania
      Zapamania BobbyO

      Posted

      Hi Bobby, well glad to hear of your good news. No Pv.  That's great!  As far as idiopathic erythrocytosis, I've never heard of it. Perhaps someone has.  I'm sure your dr. Will come up with something. Good luck. Zap

  • snoop_dog_123
    snoop_dog_123 Zapamania

    Posted

    Hi they donot hurt they numb the area where the shot goes in first.

    Honestly does not sound like you need one.

    Already diagnosed with PV with jak 2 gene.

    That is the purpose of the test you already have the results.

    Regards

  • ItchyChris
    ItchyChris Zapamania

    Posted

    There are other conditions for which a BMB is performed, Myelofibrosis is one and Acute Myeloid Leukemia is another, I am sure that there are others. Best to be sure.

    ItchyChris

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