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New too
Hi Chirlie
I sympathise with the uncertainty of your diagnosis but it sounds as if you are being well looked after. We can recommend Peter Mac but Mellita is on maternity leave. John Seymour is her boss and is very approachable. See wesite for details.
When you have more info your dr could confer with him or you could do it yourself. We travel to Melbourne via Sydney to gain access to Revlimid for my husband. He has MDS 5q- and it is finally working. The travel is cheaper than buying the drug from the US.
Because of our smaller population there are fewer cases of these rare conditions. Have you seen our local Talkbloodcancer.com forum? It is moderated by the Leukaemia Fdn and covers many disorders and there are members from Brisbane.
Best wishes
Helen
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Husband, MDS 5q- 2003. Transfusions,desferal infusions, Revlimid 2007 partial remission. David passed away Nov 2010 with untreatable heart arrythmia probably from iron overload.
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