[King Farouk]

Hello Everyone,

This is my first time time posting on the site. Our story takes a different turn and still is. My Dad is 78 and was diagnosed in Kuwait initially with AML, RAEB, complex cytogenetics but there was a debate on the number of blast cells counts which placed him at the border of the WHO classifications MDS/AML and due to his age and poor performance status he was not given the best options and there were not any cases treated with Vidaza or Dacogen the drugs were available be procured but the application is non existent. We flew dad to Boston at MGH cancer center, the journey itself was a struggle and dad arrived in Boston a very sick man. We checked in at the hospital and with the prior reports from Kuwait and London, a full check up was initiated and of course a Bone marrow biopsy which revealed MDS, RAEB-2, complex cytogenetics and blasts at 11-15% which solved the mystrey of diagnosis. We opted to start treatment with Vidaza (75 MG given by IV Five Days every 28 days ) in Boston as a result of the survival data are more available than Dacogen. After the second cycle of Vidaza, we went for a Bone Aspiration and biopsy and this was around October of 2009 and it revealed a blast count of 27% and therefore a transformation of AML was confirmed. We opted to stay in Boston and continue treatment with Vidaza and supportive care (red blood cells and platelets)and after the Third cycles the counts started reaching incredible heights and after the fourth cycle a clinical response and transfusion independence was gained. His CBC in August of 2009 was HGB of 8.1, WBC of 2.8 and PLT of 13 and after 4 cycles of Vidaza his HGB was at 11.9, WBC of 6.2 and PLT of 106.

Four months had passed and we decided to return home and continue the treatment in Kuwait, the clinical visits and setups were emulated typically like it was in Boston, a once a week clinical visit and a CBC. The counts started to take a gradual straight line graph decline when you plot them, like for example prior to the first day of the fifth cycle his WBC was 3.5 , HGB 10.7 and PLT 78. The treatment continued and there was no evidence to do otherwise as the counts were still decent. Prior to the sixth cycle the decline manifested mostly on the platelets which declined to PLT 35 and then on the day of the cycle schedule shot up back to PLT 50 therefore the decision remained to continue treatment. The weeks proceeding the day of the seventh cycle showed the major decline where WBC 2.7, HGB 11, PLT 20 which is the border of platelet transfusion. The doctors in Boston and Kuwait both recommended to delay the seventh cycle and perform another bone marrow investigation, this revealed no progression of disease and the aspiration slides had only 4-6 % blast cells and the biopsy revealed 7% blast cells as well as 4 normal cytogenetics. The Kuwaiti doctor saw no evidence of a leukemic bone marrow however it remained hypo cellular and transfusion independence is no longer apparent. Both doctors contemplated the possibility of increased toxicity to the drug and therefore they delayed the 7th cycle by about 8 weeks and reduced the dosage to half. This did not seem to improve the condition and the deterioration in the counts continues until today where the last CBC post one unit of red blood cells and 6 units of platelets transfusion indicated a WBC of 1.4, HGB of 8.5 , PLT of 24 and another bone marrow investigation is scheduled for tomorrow before a decision regarding starting the 8th cycle of Vidaza or ultimately change the course of treatment.

Can anyone give me a clue to what is actually going on, has the Vidaza stopped working? does it work on and off? no evidence of excess Blast cells but does that still means bone marrow failure? I cant seem to get a clear explanation to the situation. It is frustrating as it is.