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MDS Myelodysplastic syndromes

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  #1  
Old Sat Sep 17, 2011, 08:16 PM
modi modi is offline
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Location: New York
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Mother with MDS

My mother was scheduled to travel overseas and blood result came really bad in end of July.
Earlier, She was feeling tired as well as having cough and was being anemic. When she went to see doctor (family doctor) about these symptoms, he indicated due to her age (68), she may be feeling that. Her last blood work was done 3 months prior which was perfectly normal.

She was hospitalized for the transfusion. After the transfusion, her oncologist put her on Procrit for 4 weeks for which dosage ended last week.

Her most recent test results after procrit did not come out good. Her hemoglobin level is at 7, platelets 35 and WBC 1.3 .

Doctor wants to start her on dacogen starting this week.

Is it the right approach? Should we try to go through more transfusions?

I am planning to see MDS specialist this week. This forum has certainly helped with many details.

Thanks
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Old Sun Sep 18, 2011, 10:49 AM
kgtuck kgtuck is offline
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Join Date: Mar 2011
Location: Sylva & recently Waynesville, North Carolina USA
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Cool

After experiencing the same course your mother has had so far, seeing the MDS specialist is next best step. In my case, a bone marrow biopsy and cytogenetic studies to help give you a complete diagnosis and then conversations with the specialist to discuss treatment options available. My doctor did not begin the Dacogen treatments until results from the bone marrow biopsy were complete. The diagnosis can be very complicated and others on this site, "marrowforums", can give you a further understanding and experiences in dealing with these diseases.

IF the MDS specialist, in fact, does prescribe Dacogen, I can tell you my experience with these treatments has been very successful. After 3 months of the treatments and continuation of the drug once a month since, I have continued to be healthy for over 2 years now, and have had very slight side effects!

All is really dependent on the "complete diagnosis" to help choose the right course of action.

Best of luck to your Mom!
__________________
66 yr female;diag 6/09; MDS, unspecified, normal cytogenetics: blasts 10%; successful Dacogen;every 4th wk.; as of Aug.'12 changing to every 5th wk., stable at Hgb 12-14/platelets 200-300/wbc 2.-3.

Last edited by kgtuck : Sun Sep 18, 2011 at 11:06 AM.
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