Feeling Alone and Confused

[RockinKate]

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

[riccd2001]

When I had a confirmation dx of low-risk MDS in 2008, it took two BMBs owing to my condition of excess myleofibrosis and the lenghty cryogenetic process. So you have to be patient and try to not stress yourself. You've come to one of the best forums for the answers you seek.

[RockinKate]

Thanks riccd2001 for your welcome. Do you know any information about Myeloproliferative Neoplasm Unclassifiable (MNP) ? I am under the impression it is very different to MND but not sure am so confused about a lot of things. Trying to keep busy so I don't stress and my anxiety get out of hand but I get so very very tired. Anyway I hope you are having a good day for you.

[Cheryl C]

Hi Kate - waiting until October for results sounds ridiculous to me. I'm in Australia too. I've had 5 biopsies. My cytogenetic testing is what takes the longest and the maximum time has been 6 weeks. Perhaps testing for MNP is different? I'm sorry I don't know much about this disease. Can you summarise it here please?

If you aren't being given copies of your results for any tests, you should be. Just ask. Then you can see for yourself what the normal ranges are. Learn as much as you can about your disease and its treatment. As we often say on this forum, "knowledge is power"!

[Cheryl C]

PS Kate - If your disease is in the leukaemia family, I'm shocked at the Foundation's lack of support. I find them wonderful up here in the Newcastle area. They pick me up and take me to have my infusions and for my haematologist appointments and are always helpful on the phone. It might be worth calling them and asking straight out if MNP comes under their umbrella. If not, they may be able to point you to another organisation which would be more relevant for you.

[Chirley]

I have to say, I had a little trouble getting LF support as well. I was supposed to be assigned a case worker but it never did eventuate. I did however, get a lot of mail requesting donations. I found the telephone forums helpful but I don't think they are still being held....I could be wrong though and have just been dropped from their invitation list.

[Cheryl C]

Kate - aaah ... MPN (not MNP) makes a lot more sense. I found this site but you may already have visited it - http://www.cancerresearchuk.org/abou...tive-neoplasms

Perhaps the LFs differ from area to area. I've never received any mail asking for donations. I get the newsletter and that's it. I'm pretty sure the telephone forums must still be functioning as they were recommended to me but I've never participated. In our area each disease under the leukaemia umbrella seems to have it's own face to face meetings through the year. Again, I haven't yet participated in any of these.