AMM

[bhanson]

Hi, A friend of mine was diagnosed with agnogenic myeloid metaplasia 5 years ago and given 3 mos. to live. He is still suffering from the condition with a VERY enlarged spleen. Is this related to MDS and if not does anyone know of a place on the net like this for him or a center of excellence for AMM? Thank you for your greatly appreciated help, bonnie

[shirlsgirl]

Hi Bonnie,

I haven’t heard of AMM…so did some checking and discovered that it’s another term for myelofibrosis. Is he receiving treatment? Have doctor’s considered removing his spleen? I think the Mayo clinic is very highly regarded :

http://www.mayoclinic.org/myelofibrosis/

also, here’s a great site, with links to a support group for AMM and other great info:

http://www.acor.org/mpd/mffaq.html

http://www.acor.org/mpd/xmpd-net.html

Wishing your friend all the best…

Jody

[bhanson]

Thanks Jody, It helps alot to know what it is called and where to go for a better opinion and to talk to others with the same disease. We have started a file for him. I think his spleen is so big, they are afraid to take it out. It sticks way out of his body. Ouch. Thanks so much for your help. His family appreciates it very much. So far, they have only the VA in Walla Walla to look for. Best regards for you and your mother.
Bonnie

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