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Old Sun Aug 25, 2013, 03:48 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Don't know if its good or bad

Hi, I had my fourth dose of copper yesterday. Just towards the end I started getting that familiar throbbing bone pain that comes with bone marrow regeneration.

I'm confused. It's good that my bone marrow can regenerate but this time my counts were all pretty good (for me), so I don't understand why I would get the regeneration pain.

Does anyone have any idea how long it takes for the peripheral counts to drop after the bone marrow starts failing? I know that my first to fall is usually the neuts, then the RBCs, then the platelets.

I am starting to think that my marrow only just lasted the 5 weeks (counts did fall in last week) between copper treatments.

Would this continuous depletion and replenishment of my marrow have any long term effects. Would there be more likely to be chromosome damage or fibrosis.....something like that?

If there are drawbacks to treating at 5 weeks I would rather treat at 4 weeks and avoid long term consequences. Especially now that the doctor listens and the side effects of the copper are more tolerable. I know my marrow is sparse anyway because every MRI comments on empty marrow in my bones.

Where can I get answers to these questions? I'm not seeing a haematologist at the moment and I doubt if the Physician would know.
__________________
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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