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Old Tue Dec 4, 2012, 10:33 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi Sharnie,

My (ex) haematologist rang me this morning and he leaves tomorrow to go to the ASH conference. He goes every year.

I was very grateful to hear from him, he said that there had been a major communication problem within HOCA and he had been unaware that I had ceased treatment there until recently and then he wasn't told the reasons behind my leaving. He was extremely nice and it relieved my mind to know he hadn't thrown me to the wolves.

He suggested I would be better going to Tony Mills at Greenslopes than Logan but I will wait and see what happens. So far they have been very good.

Sorry to hear about your disease progression. I hope all goes well. I see that they offer wi fi Internet at Greenslopes, at least you're not being isolated from this forum. The Leukaemia Foundation are holding their telephone forum next Wednesday but I'll be in daycare having treatment. Are you going to join?

If/when you have your BMT at RBH, my ex haematologist works at the Transplant Unit there too.

All the best with your chemo.

Regards

Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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