Thread: advice/anwsers?
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Old Fri Oct 12, 2012, 11:39 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Rob,

Welcome to the forum. I am sorry that your wife is having issues with her bone marrow. The first few months are pretty scary as you try to get as much information as possible, but you become more comfortable with the numbers and the changes in life that take place.

To answer your immediate questions:
As you probably know, your wife's numbers are all low.
This would be called pancytopenia - meaning it affects all blood lines.

If you look around the forum, it appears to be common to transfuse patients when their HGB gets below 8.0 as this is where people seem to become really weak and have difficulty doing the basics in life. As for platelets, this is really a big variable. Until the last 2 months, i have been living with platelets in the 20-26k range for about 2 years. For some reason they have popped up over the past 2 months to 35k. Still way below normal, but perfectly livable for me provided that I am careful. Your wife's WBC number is also low, but there is another component within that number that is important which is the neutrophil count. Neutrophils help identify and fight infection.

As for the marrow fibrosis, there are several grades of fibrosis. In primary myelofibrosis (PMF), the degree of fibrosis is separated by whether the fibrosis is reticulin or collagen, with collagen being more severe, and within each type there is a grading system for a total of I think 6 categories.

I know that you said you are in Michigan and U of M is a fine center. If you have a chance for a consult at the Mayo Clinic in Rochester, MN, it may be worth your time. They are pretty well respected in the PMF field and have been at the forefront of research and treatment.

I wish you and your wife the best.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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