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Old Mon Dec 27, 2010, 11:46 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
thank you for all of the responses. As you all know, there are just so many factors involved with MDS.

Lindy - my diagnosis is based on trisomy 8, hypercellular marrow, mild dysplasia in the red and white blood lines. PCP is a type of fungal pneumonia that happens to people with immune compromised systems. Most people can fight this off. You are particularly susceptible when you have a low CD4 count or a CD4/CD8 inversion.

Margarete, the diagnosis that I have been given falls under the newer WPSS classifications as either RT or RCMD, which have varying prognoses. The predominant issue seems to be the refractory thrombocytopenia. I was asking about continued immunosuppressive therapy on the basis of my lab results week over week. Imuran tends to take 3-4 months to kick in when it is used for ITP, and my numbers had just begun to shoot up (went from the mid 20s to mid 90s over about a 6 week period). Imuran does suppress the immune system as does Rituxan (wipes out b cells for about 6 months). About the prednisone - tell me about it....not only did it not really help - i have developed avascular necrosis in both hips as a result.....not fun.

Greg, I have been following your post with quite a bit of interest. I too have read that Vidaza really seems to have a great effect on patients that have increased blasts - i am less than 1%, and fall into the intermediate -2 and high risk category, which is part of what concerns me - not to mention the grade 3/4 thrombocytopenia when I am already at grade 3. As for the DR15, I have not received an answer on this one yet. I did have my blood drawn for potential donor matching and asked the question, but the doctor has been out and his assistant said that she doesn't read too much of the detail in the phenotypes, so I am not sure. It does seem to be a strong predictor of success for this type of treatment - although I have also seen studies showing that up to 70% of MDS Trisomy 8 patients respond to immunosuppressive agents......this could be due to a greater concentration of the DR15 in trisomy 8 maybe?
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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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