Rose Shifflett's MDS story

[Rose Shifflett]

I am 57 years old and was diagnosed in 09-15-06 with MDS , refractoryanemia with excessive blasts (33%), no symptoms except lack of energy, fatigue and bruises when I went to the Dr. for an infection. After being howpitalizes in Sep and Oct I was put on Vidaza shots which brought my count blasts to 11% in my bone marrow, my WBC ar 3, my RBC 4 and my platelets about 200, I have been transfusion independent since No 06 Since my body seems to respond well to Vidaza I am now on a 21 day cycle. The transplant team at Medical College of Virginia in Richmond has found 3 unrelated donors with an10/10 allele match. My oncologist is now talking about the risks of GVHD with an unrelated donor after I thought it was our goal, I will consult MCV again, maybe another opinion or is the stage too advanced, does anybody know?
I am learning to live with the disease one day at a time, I was so grateful to find this forum, it spells hope and support and strength for me Sincerely, Rose

[Ruth Cuadra]

Hi, Rose.

How are you doing on Vidaza?

It doesn't sound like your situation is too "advanced" for transplant, but if you are doing well on Vidaza it seems like that is a better solution as long as it keeps you stable. Having 3 unrelated donors available is very promising, but--as I'm sure you know--the risks of transplant at any age have to be considered very carefully. If if comes to the point that you are considering a transplant, I would very definitely recommend getting multiple opinions from centers that have experience transplanting patients with MDS. You can get detailed information about transplant centers from the National Marrow Donor Program.

Regards,
Ruth Cuadra

[Loretta]

I am glad you are responding well to Vidaza. It gave me a year of being transfusion free and my blasts eventually went down to 3%. I thought I would be the first Vidaza miracle! But 6 months later my blasts jumped up to 42% and I had progressed to Acute Myelogenous Leukemia (AML). This is a fickle disease. What works for one, will not work for another. What works for many months, may suddenly stop. Get a second opinion, from a hemotologist/oncologist who specializes in MDS. The Myelodysplastic Syndromes Foundation has a list of MDS Centers of Excellence and will answer questions, and even help set up appts. for you. <www.mds-foundation.org> Transplant is a scary thought, but be thankful for the several 10/10 matches, I am envious! Sometimes Hemotologist/Oncologist docs and transplant docs do not agree, so, its up to you to get second opinions, research and make those hard decisions. Loretta, in TX