What condition my condition is in Part II October 2011

About MDS  

Soundtrack                                                                                           

Here is my email blast from  back on October 11th, 2011,  about two weeks into figuring out what was going on in my marrow, and exploring treatment options.

Myelodysplastic Syndromes (MDS)

MDS is a group of disorders where your bone marrow does not work well, and
the blood-forming stem cells in your bone marrow fail to make enough healthy
blood cells.

People with MDS can lack the right amount of red blood cells, white blood
cells, and platelets (the small cells that help blood to clot).
The disease happens because the bone marrow cells do not develop into mature
blood cells. Instead, these blood cells stay within the bone marrow in an
immature state. The symptoms and the course of MDS may vary greatly from
person to person. These differences depend on which blood cells are
affected.

All people with MDS have two things in common:
They have a low blood cell count for at least 1 blood cell type. This is
called cytopenia. ( I have all three, or trilineage cytopenia )
Their bone marrow and blood contain blood cells with an abnormal shape,
size, or look.

What does the term "myelodysplastic" actually mean?
Myelo = blood cells and Dysplastic = abnormal development or growth. So,
when you have myelodysplastic syndrome, this means that your blood cells
have an unusual shape and that they have abnormal growth.

Treatment of MDS

Here is an analogy -- posted on the Marrow Forums by Ryan Jay

"Another way to think of MDS treatment is like this...

Imagine your bone marrow as a beautiful lawn....

In Aplastic Anemia: There's a crazed gardener spraying an otherwise healthy
lawn with herbicide killing everything...

In most forms of Leukemia: You have giant ugly weeds growing in the middle
of the lawn. Pretty dramatic, but in most cases it's easy to target them and
leave the lawn alone.

In MDS: You have something like crabgrass. The lawn is kind of weedy, but
its harder to treat the MDS "weeds" without hurting the healthy lawn too".

Cheers,

Chris and Anne


-----------------------
Flashing ahead to the present, 18 mos. and 50 units of other peoples blood later, I can append the analogy.

So we got out the backhoe and tore up the lawn, tried to kill everything and hoped that the crabgrass wouldn't come back.  (This was accomplished with a 6 month course of Chemo Therapy.)

We didn't get all the crabgrass.

So now we are going to tear up the lawn again, burn and salt the ground, and transplant my sister Laurie's
marrow cells.

To torture this analogy a bit, studies are showing that Agent Orange, AKA Round-Up
(yes that round up in your garden shed ) , is the cause of MDS in Vietnam Vets. The sad part is
by the time the VA and the insurance companies, and Big Pharma, and the politicians get on the same page, most of the vets will have died. Problem solved, right?

Don't get me started.

Later,

Chris