Having treated many patients like this, these cases are often very difficult to manage. They sent off clonal hematopoiesis of indeterminate potential (CHIP) which is helpful in identifying mutations that may be causing cell abnormalities in MDS and sometimes garners targetable mutations eg IGH, del5q, ringed sideroblasts. However many of these we do not have detailed data given rarity so their effects on treatment are still unclear. In February 2023, that loss of chromosome 7 confers a very very poor prognosis along with refractory thrombocytopenia. I believe getting palliative care involved at this point may have been warranted. I do not believe any treatment wouldve changed his course by this time.I dont think a mistake was made by not treating him since signs of transformation to AML were not evident on the marrow from 2021. A score we use to predict transformation would also predict that prognosis was good with low chance of AML transformation in the next 10 yrs. Your father also has an extensive cardiac history and the drugs we use to treat MDS to AML have significant side effects including heart failure which Ive seen happen before from anthracycline. He had too many comorbidities so Vidaza was appropriate when it was given which is used to treat AML. Wed classify him as medically unfit but not frail and these patients are typically very hard to treat. Patients also become refractory to transfusions over time because their body starts making antibodies towards platelets. I do not think the mix up with premeds made a difference.Watching a loved one die from a hematologic malignancy is not easy, especially MDS. Please make sure you take care of yourself as well. I am very sorry for your loss. You did the right thing letting him go like you did. There was no meaningful way out of his situation where he would go on living a quality life. Please know that his medical team did everything they could.
1: It really seems like he should have been diagnosed and started treatment for MDS after the bone marrow biopsy/aspiration in July 2021, not 11 months later given the fact he has tried so many therapies for ITP with no response. It also notes that patients "typically have mild-moderate thrombocytopenia." He has always been below 50K, surely that's not moderate?What is your opinion on his history/diagnosis?2: I believe the nurses screwed up with premedicating him for his tranfusions during his last hospital visit. He had negative reactions on the two days I know they deviated from what is clearly on his chart AND on the request from his hematologist/oncologist which tells them what medication he needs when. Then, units aren't even ordered for the following two days, a man who is recorded as transfusion-dependent in his chart. Prior to his hospital visit, the premeds were followed almost exactly with no negative reaction, and after noticing his head bleed, the nurse followed the premeds exactly with no negative reaction. I am going off of his medical history acquired from the hospital which notes exactly when the medication is administered (not being confused with when they charted it). His cause of death is noted as acute respiratory failure due to PNA, but its only because we took him off the oxygen due to the head bleed which I believe they caused.Am I looking at this wrong? Did they mess up?THANK YOUI know, it's a long one. I really appreciate it if you took the time to read through it and give your thoughts and opinions.I know he had a rough disease, and I believe I could accept his death, but something in these hospital notes stinks...