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Hi Catherine,
I saw my haematologist this morning and he insists I have to have 3 weeks of daily IV Copper before I go to a maintainance dose.
I start outpatient treatment on Monday at Chermside Cancer Clinic which is about 75 kilometres each way and because I don't drive I have to go by Ambulance and they have a reputation for picking you up 2 hours early and collecting you for return 2 hours late. All in all I'm expecting long days.
I'm not being restarted on a lower dose of Exjade. Lowering the ferritin is once again on the backburner.
My doctor looked at my toe and said that it was indeed broken and I need to strap it to the next one, I'm sure I'll get ariound to that before I see him again on Monday.
The haematologist also told me that he asked the hospital what they had done to annoy me enough to make me walk out because he considers me a very placid person. They didn't know ......!!! You just have to wonder sometimes.
Regards
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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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