View Single Post
  #6  
Old Wed Dec 14, 2011, 06:30 PM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi Catherine, I understand Bruces' decision to stop the copper supplementation.

I was also told that my BMB and blood results weren't consistent with copper deficiency but my blood tests did definitely get better with copper replacement. I suspected at the time that the Vidaza had started to work and that's why my blood results had improved and I put this to my hematologist. He just said that if it had been a Vidaza response I would have relapsed once the Vidaza was ceased. I still have doubts about whether it is the copper helping or the result of Vidaza but I have to go with the hematologist and defer to his knowledge.

The same article I saw about the man who went blind also mentioned that untreated copper deficiency can progress to leukemia and certainly my blast level was increasing.

I have to admit to considering refusing any more copper treatment and just having transfusions when needed. it's just a matter of quality of life versus length of life. I have started to hate my visits to daycare for copper. At least with transfusions it would only be one visit every two weeks or so and there is no evidence to show that copper replacement will stop neurological deterioration let alone improve the damage already done.

The daycare I go to for treatment are having Christmas week off and only having minimal patients the following week, so my treatment has been pushed back a couple of weeks anyway and to try and get my blood levels up again I'll have to have daily visits for a couple of weeks and , frankly, I'm soooo over them. I'm sure my doctor thinks I asked to have more time off and doesn't realize that they just want to have less staff on over the holiday period. Anyway, I'll think of it as my opportunity to have a nice long think about my treatment options.

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
Reply With Quote