Diagnosis: Acute Myeloid Leukemia (AML). A Journey

Yesterday, George met with Dr Loren at 9:00 am. She asked if her intern could sit in and we said sure! We were hoping she would be able to explain what caused the drop in George’s chimerism numbers, but she really couldn’t. She said the donor cells may be weak. So, if he gets a boost of donor cells, the hope is that they will take over and get rid of George’s cells. She said ideally, the chemo would have completely wiped out George’s bone marrow, but that it seems that didn’t happen, so that could account for the drop..as his own marrow recovered, it elbowed the weaker donor marrow out. Who knows? She did order another chimerism test, even though it’s not really due until next month. This way, we can see if it was a one-off or if completely stopping the tacrolimus will help his numbers go up. She said odds of that are small. Ugh. We should get those results in a few days.

I asked her what she was thinking….what was concerning her and she said she was anxious that there may be leukemia in George’s bone marrow. She didn’t think there was, but she is anxious to find out. So, off he went to the office across the hall to have his bone marrow biopsy done by Jackie, the nurse practitioner.

George was so nervous about having this procedure done in the office and not under sedation as with his five previous biopsies, but Jackie did a great job and it was over before he knew it! He also took a 2 mg of Ativan 30 minutes before it all went down so that helped him chill and not stress so much!

So now we wait. Dr. Loren said we should have initial results in 2-3 days. At that point, we will decide what to do next. If there is no leukemia, we will proceed with the DLI (boost of donor cells) and stay on the 3 pills of Xospata every day. If there is signs of leukemia, we will have to think about some type of chemo treatment that hopefully can be down on an outpatient basis as before. Dr. Loren did mention the possibility of a second transplant down the road, but emphasized that is not what we are looking at now. She said she was just telling us all the possible contingencies so that we would know and understand that there is a plan for everything that might arise.

I asked her if a cure was still possible for George’s leukemia and she said YES. That was comforting to hear, especially for George.

The waiting is hard. But necessary. Here we go….again.