Please HELP - Can chemotherapy change the form of MDS
 

Hello,

My mom was diagnosed with MDS that quickly started progressing to AML and she was given Decitabine when her bone marrow suggested RAEB-II. Since she was way too weak and underweight, she wasn't given the completed dosage but she survived the chemo and felt good for about a month and a half with her HB count moving to 13 from 9 very fast. but she was diagnosed with infections post chemo and the doctors said that was common during chemo since the body is weak and you are prone to infections. There was swelling in her lymph nodes all through the body. After a PET Scan, she was also diagnosed with Tuberculosis. She is being treated for Tuberculosis for 4 months now and her medication for MDS (she was given EPO and Flagel) has been stopped for a month now.

Its been three months since her chemo and after that one month, her body started deteriorating again and now her appetite is gone and she is feeling weak again with complaints of feeling dizzy and very weak. Today her bone marrow report says Refractory cytopenia with multilineage dysplasia with 1% blasts and her HB is 10.

I am wondering if this is any form of relapse (and i am very sacred about it) or this form of MDS is result of the chemo? Can chemo alter the form of MDS that one is suffering from? Also, she is again deteriorating quickly, is RCMD more prone to AML conversion or is this curable?

I am worried and don't want to see my mom go through all that pain again. I will be grateful if someone can help me with the questions here. I am scared of a relapse as I have seem so many people die of a relapse when she was hospitalized.

Please help.. please.

Surabhi

RCMD
 

Hi Surabhi,
As far as I understand your mother responded to Decitabine (Dacogen) but unfortunately her weak immune system could not fight tuberculosis - she had probably had that infection a long time befor the bone marrow disease.

She had a severe form of MDS initially, RAEB-II. Now she has RCMD that is a less severe type of MDS (I have it myself since 2006). Both are blood cancer and can only be cured by stem cell transplantation. I don't think it is possible for a patient with tuberculosis to get a stem cell transplantation. Perhaps she can continue with Decitabine?
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 (RCMD) 2006, transfusion dependen since dx. Supportive therapy with transfusions, drugs for iron overload and Neupogen for low white blood cells until 2010. Started Thalidomide + Prednisone 2010 with positeve result.

Hi Surhabi!

Im sorry to hear about your Mom's trouble. Echoing what Birgitta as said, here current diagnosis is actually much better than the RAEB-II. Generally, it's the blast count that indicates a more severe form of MDS, and RAEB-II is associated with 10% to 19% blasts, so the fact that she has 1% now is a significant improvement, thanks to the Dacogen.

It sounds like her current difficulties may have more to do with the risk of infection. What is her neutrophil count. Have the doctors suggested Neupogen or Neulasta to try to stimulate more white blood cell production?

Take care!

Greg