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Old Fri May 13, 2011, 08:20 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Thanks for that Marlene.

I can't say for sure but I think he was talking about 24 hrs a day. I have a s/c port.

If you were given 5 prefilled syringes then the drug must have at least that length of time once reconstituted. I'm hoping to only need weekly visits which could be combined with my IV Copper days. The protocol for accessing my port has changed recently and instead of changing the needle every 72 hours, they now change it weekly.

From what you say it could take months for the ferritin to drop, that's a long time to carry a pump around 24 hrs a day. Maybe alternating one week on and one week off would work, oh well, something to work out with my doctor.

Thanks again, it's made me realise that this is going to be longer term than I thought.

Regards
__________________
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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