New BMB results

[Smarti54]

I just had my second BMB done in two years because of some recurrent infections with the MDS that led to pancytopenia. The doctor called and said that my first one two years ago showed mild dyplasia and this one looked as if it was leaning toward ITP until cytogenics came back with a del(13)(q12q14). This is new but he didn't seemed too alarmed. I will receive the full report in a week or so and will be getting lab work drawn routinely to follow the counts. I know this is a rare deletion and after searching the site there has only been two other people I could find that has mentioned this and they had AA and lymphoma.
Has any one else had evolution of their MDS to add in clonal abnormalities? Thanks in advance for your knowledge to help in any way.

[Hopeful]

Hi Smarti54,

You may want to take advantage of this watch-and-wait time to get a second opinion at a center with expertise in Aplastic Anemia. Given your young age and the absence of increased blasts and chromosomal abnormalities at the time of your first BMB, you may have more of an evolving AA or perhaps MDS/AA overlap.

Research has shown that the 13q deletion tends to respond to some form of immune suppression therapy, should that be needed in the future.

Have you been tested for PNH?

Best of luck!

[Smarti54]

Thanks for answering. I have considered asking whether I should be tested for PNH but have not yet. I will have follow up lab work and will have my complete results from the BMB in a week or so and will ask if PNH could be a possibility. Thanks.