[Irini187]

Hello all.



My name is Irini, I am from Greece and I am new here. My father, 72 years old has a history of IgA Nephropathy and Rheumatoid Arthritis. He was treated with Infliximab (Remicade), Methotrexate, Corticosteroids and Adalimumab. Trust me, it's hard for me to even spell these drugs however I just feel I should present a whole picture of his health status. Although it was difficult for him to cope with all that medicine he was doing fine. He was used to the side effects of each medicine, he was working out as much as he could and in general he would not let life pass him by. 5-6 months ago he complained that walking had become harder for him compared to the past (1 year ago) when he would walk 3-4 klms per day without any problem. At the same time I noticed that he had become quite pale. However he would not give up, he felt quite already and went on with his everyday activities. 2 months ago, he noticed that he could not walk for more than 0.5 klms before he was out of breath so he decided to check things out with a pneumonologist and a doctor that specializes in heart conditions. T cut the long story short, the second doctor noticed that his blood exams for the past year had shown a decrease of his HCT from 41% to 36% so he suggested that my dad did a blood exam to check fis latest HCT levels. The exams came out and his HCT was 17.4%. We were all in shoch and decided to take him to the hospital for blood transfusions. Once he had been admitted to the hospital he started going through numerous exams one of them involved bone marrow aspirate and biopsy. This exam showed Trilinage dysplasia with blasts 12%, increased erythroblasts. Flowcytometry showed erythroblasts >50%, blast cells 12.2%. His overall picture was suggestive of secondary RAEB-trans. On the 5th of March he was administered Vidaza 75mg/m2 (150mg) for 7 days. His Nephropathy prevented the doctors from admiting a bigger dossage of the particular medicine. On the overall, my dad tolerated quite well the therapy with no complications. Before exiting the hospital his CBC showed: Hb 8.4, HCT 24.9, WBC 2390 (PMNLs 45%, Lymphocytes 48%, no blasts), PLT 55000.

This morning, 2 days after he was relesed from hospital the doctor ordered a new CBC which showed HCT 26.5, Hb 8.7, RBC 2.990.000, WBC 2.300, PLT 53.000, Lypmhocytes 69%, PMNLs 25% and the doctor ordered to do a 2-days tretment with Granulokine injections and do a new CBC on Thursday. On April 2 he is scheduled to go into the hospital for the second round of Vidaza treatment.

He is not aware of how serious his condition is. At least not the whole picture. By all means he is no fool and he understands that we're keeping something a secret from him. However I think that the doctor is the most appropriate person to give him the information she (the doctor) thinks he (my dad) can handle at any given point, based on his blood results as well. I asked her about the possibility of a bone marrow transplant of stem cells but she told me that his age and his overal health condition do not suggest that he could go through such heavy treatment. She also mentioned that patients with such disease usualy dont make it for more than 2 years...and that is a positive scenario. Most likely, MDS will develop into AML and then I really don't know what is going to follow and for how long. I am still shocked, however I deny myself to lose my temper or my sense of humour. I know that things are bad and will most likely get worse, but I try to take one step at a time. If only I could see the future I would only wish that my dad suffers the least possible and by the time it is his time to go I just hope that he has made the best out of his life.

Thank you so much for taking the time to reading this. In case anyone of you has some information, suggestions or thoughts that he/she would like to share, please do so!

All the best