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MDS Myelodysplastic syndromes

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Old Sat Jun 19, 2010, 04:14 PM
Tamir Tamir is offline
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Location: Gaithersburg, MD
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MDS secondary to chemo from BMT?

Hi Everyone:

My name is Tamir. I had PNH in 2004 and had a BMT which cured me of the PNH in July 2004.

I've had moderate to severe Chronic GVHD since the transplant. Right now, I've had moderate to severe Neutropenia for the last 5 weeks with no explanation so far. The initial theory was that this new Neutropenia was as a result of a side effect of my latest primary anti GVHD drug that I've been on, Gleevec.

However, I've been off the Gleevec now for well over the time that it's supposed to stay on your system and still impact you, yet the neutropenia is still there.

So far there are no other unusual cells in my blood, which is good news. However we're taking the wait and see approach for now.


One possibility, although very unlikely, is sone secondary blood disorder as a result of the chemo from the BMT. MDS is top of that unlikely scenario.

Have any of you got MDS or heard of someone getting MDS secondary to the chemo from a BMT? Is this really even a remote possibility do you think?

Second question is did any of your MDS' start with just a low white cell count, and no other symptoms and if so, how long did it take for further symptoms to show up, starting the process of the docs looking at MDS as a possibility?

Thanks a lot
Tamir
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Old Mon Jun 21, 2010, 03:09 AM
Neil Cuadra Neil Cuadra is offline
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Tamir,

I sure hope it's not MDS. Secondary MDS is generally harder to to treat than de novo MDS. Let's hope the cause of your neutropenia can be found and is something much more easily treated.

Chemo and radiation are known as possible causes for secondary MDS and I can't think of a reason that the chemo and radiation for a transplant wold be excluded. Then again, I'm not a doctor so I'm just speculating that the possibility is there, unlikely as it may seem. If your peripheral blood looks OK other than white count, are they talking about doing a bone marrow biopsy to check your marrow? It's hard to rule out MDS without one.

Also, if Gleevec no longer seems to have produced the neutropenia will you be going back on it for GVHD?

For the record, Ruth had all three counts low at diagnosis. She hadn't been having infections, and her bruising and fatigue had been symptoms for many months, so she apparently didn't have a low white counts before she also had low platelets and a low red cell count.
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