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Confused
Hi, my treatment has been going well at the new centre, I haven't even experienced the abdo pain and diarrhoea I used to get every time at the previous centre.
Yesterday I was having my copper infusion when my port started hurting. I called the nurse and when she flushed the line it became obvious that the needle had moved and the copper had been leaking into the tissue. No big deal. The needle was replaced and the copper started again. About half an hour later I started getting itchy all over, then I got a rash. At first it was only on my arms but it progressed to my whole body except from my knees down. The infusion was stopped and I was given more steroids and anti histamines. After an hour the rash had subsided and the copper was restarted. Within a half hour the rash was back very badly. It was originally like hives but then they all merged into each other and became raised and hot. It felt like my skin was burning. They rang my doctor who said to stop the treatment and sent me home with antihistamines.
I returned for more treatment today but they wouldn't give it to me because the rash was still there and still quite bad. The haematologist came and ordered 50mgs prednisilone daily for 5 days, then stop, he said I didn't need to taper.
He is going to contact the drug company to see if the have changed the components. If the drug has not been changed, he is not going to let me have any more copper. He admits that this will be a big problem. I feel kind of confused but there is nothing I can do but wait and see.
I also spoke to the NUM about an article I read where they transplanted male donated bone marrow to females and then found Y chromosomes in the recipients cerebral tissue, thereby proving that transplanted stem cells can engraft in nerve tissue. We both decided that if I can't have copper infusions any more, that this option should be explored. My question is...if BMTs fix chromosomal abnormalities caused by MDS or AML, would it fix my chromosome deletion too? Am I being silly even considering it?
Any opinions?
Regards
Chirley
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