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Thank you so much for your response. My doctor did say it would be reasonable to schedule a biopsy in the near future. My last biopsy, done in 2017, states that there is no morphologic evidence of MDS and karotype is normal and consistent with that of a male donor. The report does mention macrocytosis, but that can be caused by conditions other than MDS. I’m so confused!
I am so sorry for what you and your Mom are going through. I also had an issue with thrombocytopenia following a stem cell transplant and relapse eight months later. I received over 100 HLA-matched platelet transfusions. It does take time for the medications to work. I was started on azacitadine (Vidaza) and it took me about 12 cycles before I was transfusion independent. I was very sick in the beginning and ended up in the hospital a few times. One time, my counts were barely existent. I am a bit younger than your mother, but I have now been on Vidaza for over 4 years and I’m doing well. You are both in my prayers.
Are you referring to the bone marrow biopsy results? The chromosome analysis usually takes a bit longer. Your IPSS score will determine what your risk factor is. This is a combination of the number of blasts (immature white blood cells – you want this number to be under 5%), number of chromosome aberrations and number of blood lines that are affected (red blood cells, white blood cells and platelets). Request a free copy of 100 Questions and Answers About Myelodysplastic Syndromes from the MDS Foundation. It will help answer a lot of your questions. I also agree with the site administrator about going to a Center of Excellence for MDS to be evaluated. I hope this helps.
By the way, my name is Jill too and I will be 55 soon. What a coincidence!July 10, 2015 at 5:06 pm in reply to: 61 Y/O MDS patient, with remission after failed BMT. Please help! #27106
My first thought would be Graft vs. Host Disease of the gut, but you mentioned that her transplant was unsuccessful. I relapsed eight months following my stem cell transplant, however, I am still 100% donor. I am assuming that her doctors have evaluated her for GVHD? I agree with the site administrator. I would go to a Center of Excellence for MDS.
I was diagnosed with unclassified MDS (Intermediate-2) in 2008 at the age of 47. My first symptoms were fatigue and excessive bruising. It took six months of seeing my local hematologist before I was finally referred to Stanford, which is 4 hours from my home. It just so happened to be a Center of Excellence for MDS. Getting a second opinion is a great idea but in my case, I needed a transplant and it would not be covered by my husband’s insurance unless it was done at a Center of Excellence. You might check with your insurance company.