Dear all,
Just to refresh memory about my father (83 years old) history; he is already an old CIDP (peripheral neuropathy) patient since 2003, and 10 month ago we discover that he had the worst desease ever MDS RAEB-2 which transformed to AML in very very quiqly in 2 months. Our hemathologist decided to start VIDAZA which as he said is the only choice for him since he is an old patient, and he has a history of neuropathy and take IVIG every month since 2003.
Dad is now in his 5th cycle of VIDAZA, we are now in the hospital, on the oncology floor, today is his 4th day injection.
Briefly he is highly neutropenic, with ANC zero since one month, and his hematologist has stoped the neupogen drug for a reason i realy dont understand; he always say that in his case neupogen may increase blasts and it will make his AML get worse.
Concerning his blood counts:
WBC: never go up above 1000.
Hemoglobin: oscillating Between 7 and 10, weekly he get transfusion to raise it to 10, and at each end of week his hemoglobin return to 7.3
ANC: almost always zero, sometime it goes up to 20.
Platelets: also he needs every week one donor, it goes up to 90.000 and at the end of the day it go back 20.000.
Concerning fever:
We can predict fever every month 5days before the new cycle of vidaza, we admit him due fever , they take for him blood and urine for culture, usualy nothing appear in culture, they give him a wide range antibiotics like TAZOCIN, and fever goes by itself, than we start vidaza right after (7 days 140 mg|daily). So each month we stay in hospital 13 days, its so hard for him and
for us (me mom and dad).
My question Dear friends:
1- when i ask our doctor why he is not allowing neupogen to raise ANC, he refuse it strictly, and he say it may worsen his case
2- when i ask him if vidaza will work and when it will work? He say that vidaza may be working now and his stability for one week transfusion shows that vidaza is working, at his age people does not live more than 4 months
Honestly friends, i dont want to loose dad i love him very much, plz tell me if our doc. Is working right? I want to reach a level which dad be transfusion independent at least for 1 month.....so why he is taking Vidaza, why he is taking vidaza's side effects if it will never make him better whyyy?
Sorry for my bad english, and thats my 8th day in hospital next to my dad, im depressed hopeless need some supportive words other than our doc. Optimistic words.
Thank you
Ziad mohsen
Sincerly yours