JAK2 negative PCV, anyone?

Hi, I am also primary PV but Jak 2 Negative. I have been putting off the bone marrow biopsy as im a bit of a wimp and my dr said it wont make a lot of difference to my treatment will just give them more information.

The bone marrow aspiration is not a big deal. I had one last year. Your  emotholagist numbs the area and you only feel a slight pain. Well: I was diagnosed with Primary Thumbrosythymia and positive for JAK2. I've been on Hydroxyurea 500mg twice a day to bring my platlets down to about 400 from 700. Its working. The problem is, you have to keep an eye on your red and white blood cells. If we now could diagnose what is the cause for my loss of smell and food taste that would be greate. My Dr. says it not from the Hydouxyurea.

?Good luck.

Hello Crockett

The bone marrow biopsy helps assess the level of cellularity in your bone marrow. They will check the volume ratio of haematopoietic cells. People with Myeloproliferative disease are generally hypercellular as opposed to normocellular due to the proliferation of blood cells in your body. The procedure can also be carried out to check on possible bone marrow fibrosis but screening of peripheral blood film following a simple blood test can give an indication of this i.e. evidence of tear drop shaped red blood cells. That’s not to say the presence of tear drop cells means you have fibrosis as this can be caused by other conditions (and temporary bone marrow stress) but your Haematologist may suggest a bone marrow biopsy if he/she felt your blood results merit it.  Usually though tear drop red blood cells are accompanied by anaemia. I suspect your Haematologist just wants to have a clearer picture on your blood cell cellularity.

The procedure itself is nothing to worry about. The Doctor will numb the back of your pelvis with a small injection, which I didn’t even feel and then he/she will most probably aspirate some of the liquid marrow followed by a small piece of the marrow itself (the biopsy). You might feel a little bit of pressure in your back but if mine is anything to go by, he/she will pause to relieve the pressure and take the time to talk to you and to reassure you.  My Doctor was brilliant and I came away thinking “well that wasn’t too bad”. You will feel a little discomfort when the injection wears off but again, in my case, I didn’t find it too painful.

Hope the above helps

Kind regards

Keith

Hello again Crockett

I mentioned that the bone marrow biopsy is taken from your pelvis, I actually meant back of the hip. This is usually where they will take the biopsy. I was having a brain fog moment. Just wanted to be clear. Sorry about that.

Keith

Hi Crockett.

The bone marrow biopsy is not so much as to examine the blood cell situation but to rule out other diseases eg. cancers that may have spread to the bone marrow from  another site, such diseases as Hodgkins and Non-Hodgkins's lymphona.  There are others but there can be excessive fibrosis from other serious complaints from which the biopsy can evaluate the quantity of fibrotic tissue discovered, which enables disorders to be included or excluded from the equation.  If you have any qualms about the biopsy mention your worries to the doctor carrying out the procedure beforehand.

Peter.

 

Hi kett. If you didn;t test postive for the jak2 gene mutation. then what you  have is esecondary PV. Sometimes they just don;t know if the environt is thie cause, or? I do have the jak2 gene mutation. We sometimes get all kinds of tests to see if anything else is involved in our body. We are all different, and we can be affected in different areas. Hope your tests turn out good. I will say a prayer that you are fine.

harrishill