I am taking completely oral regimen of Venetoclax + Inqovi for AML for 5 days and then 23 day off , 85 years .
I had to change doctors and go out of state for this oral regimen
I was very sick with my other chemo . I lost 40 lbs When I left for out of state treatment I was very weak..I was out of state for 3 months , came back healthy Doctor was amazed . I was walking going out to restaurants, shopping for clothes I lost weigh, I finally gained back 20 lbs. they gave me infusions, Neupogen injection to keep me healthy. life was very good I did experience fatigue.
My Doctor is following the oral regimen, will not follow up on blood works ,finally gave me Neupogen injection on Aug 17, first time since June 4,before he gave me peg felgrastim once a month, I was told my count would go up gradually over the month they didn't I knew why they crashed he started cycle at 23 platelets I told him they would crash to his face. Later asked him to be polite ,why it did not work as my counts kept dropping on blood test,he had no answer .That kind of injection isn't for a patient when you know the Neutrophil will drop dramatically .I said before dropped 4 for two blood counts, Neutrophil dropped to 0.2 I started my THIRD cycle Platelets 29, on my SECOND cycle he delayed for two weeks, they were 29 considered too low. waiting for my platelets count to go up on , instead they dropped Platelets 23 he started SECOND cycle. he says infusion are only an artificial boost only last 1/2 days. I don't care I just want to be healthy and not delay my treatment. My out of state doctor gave me infusions to keep me healthy and not delay treatment. Not looking forward to the friction called demanding infusions, his threshold has changed from 16 to 20 or lower for infusion, Nuetrophil has dropped from 1 to 0.5 his notes says 1 when I called because was 0.5 I was told you only give Peg felgrastim once a month and it would go up gradually .I don't understand his reluctance to give platelets infusion, and Neupogen injections. I am not looking forward when I finish and I have to call and tell him I want Neupogen injection that raises neutrophil immediately and should be given as needed to at t kept counts as he previously said at 1 to keep me healthy during my treatment and say I don't want that peg felgrastim It is not a healthy relationship between myself and doctor I have tried to switch doctors , On last appointment , said you don't want to see me anymore , made my next appointment for 4 weeks with NP nurse, I have only seen him 4 times since June 4, I had to ask to ask him! It was a awkward I still am trying to switch to another doctor,
I am still alive almost 9 months after my Doctor told me my treatment no working arrange for hospice. I have to see him say he suspects cancer is coming back because of low counts I said it was because counts were so low when he I started cycles , to be polite I didn't say you could have given me infusion and then counts would not dropped so low. It is so obvious to me what he has to do he wont do it. I feel like a broken record!