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Old Wed May 13, 2015, 06:42 AM
RockinKate RockinKate is offline
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Join Date: May 2015
Location: Melboune
Posts: 2
Feeling Alone and Confused

Hello all,

I am new to this forum and trying hard to get some much needed information on MNP. I had a bone marrow biopsy and Aspiration done on the 27th March 2015 (the pain was very unpleasant and I am still getting the odd pain from the site). on 27th April I was given a diagnose of MNP but they do not know what sort yet as only 4 of the 44 tests that where meant to have been done on my bone marrow biopsy have come back.

Is it normal to wait so long for test results on bone marrow biopsy to come back? (I now been told I have to wait to October to hear the final results). In fact I am feeling Confused, Angry and kind of like I am been fobbed off a bit.

Even though I am seeing a very well known hemologist professor at the new Oliva Netwon John Cancer Centre (Austin Hospital) here in Melbourne I feel he really does not either know what is wrong with me or does not know how to treat the condition as he has been rather vague in answering my questions and keep saying wait till all the results come back. ( He actually refers to me as his mystery lady) Because of all the delays it is causing my anxiety and stress to go through the roof. Has anyone else had to wait so very long for all their Bone marrow biopsy results to come back? (I just think been made to wait over 6 months for results is really bad).

Any one with any advice or words of support would be much appreciated. All I know so far is that my blood platelets are highish around the 800 mark (they say normal I believe should be around 200) also he told me my esophilis (I think that is how u spell it) is 6 times higher than what they should be.

I do not have the Jak2 or Cel? mutation still waiting to find out if have the philidelphia mutation.

The professor also mention that I had no fat at all in my bone marrow. So can anyone tell me is it good or bad to not have fat in my bone marrow.

Sorry for all the questions but there is very little about MNP anywhere on websites and I am trying to find out as much info as possiable about this as I feel so alone handling this and it be nice to know if there are other people going through something similar.

Have rung the leukemia society here in Melbourne about 6 times looking for support (they keep taking my name and contact details but never ring back) so think that organisation here in Melbourne can't help me.

Does anyone know if there is a MNP support group in the inner city of Melbourne?

Thanks everyone for reading my long post
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Newly diagnosed with MPN on 27 April 2015 on watch and wait while awaiting till October 2014 for results on Bone Marrow Biopsy and Aspiration done on 27 March 2015. Feeling Highly frustrated.
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