On March 11, we drove out to meet with Dr. Wagner at Jefferson University Hospital in Philadelphia for a bone marrow transplant (BMT) consultation. The first thing that happened was George had his blood drawn, of course. This was done to get George’s blood type and to check for anti-HLA antibodies. If the antibody count is high, he would have higher chance of rejecting the new bone marrow. One can get the antibodies from blood transfusions received during induction and consolidation chemotherapies.
Then we were taken to the exam/consult room and met Dr. Wagner. He went over George’s medical history, including how he was diagnosed with leukemia and then he gave him a quick exam.
A nurse practitioner came in and unwrapped his wound and took a picture of it to upload to George’s electronic medical record. Then Dr. Wagner got down to business laying things out for us in a frank and informative manner.
Because George has the ASXL 1 mutation and the FLT3 gene, he is designated as a poor risk. What we don’t know is whether that means he is a poor risk before transplant, or a poor risk overall, even after transplant. That’s a question I wrote down to ask Dr. Loren at UPenn when we have our consultation with her on the 16th of March. Dr. Wagner also said that George’s bone marrow biopsy showed “monocytic features.” That is just a pathology designation and describes the morphological appearance of the cells. Because of that, he experienced gum discomfort/pain before his diagnosis, as monocyte blasts tend to have dental involvement. Due to the monocyte type blasts and the dental issues, George is at a higher risk of having leukemia in his spinal fluid, so a spinal tap will be performed to make sure that isn’t the case. Dr. Wagner said only about 10% of patients have leukemia in their spinal fluid, but George feels with the way his luck has been going, he will be one of those 10%.
Of course when you hear the words “spinal tap,” it’s a frightening thing. But Dr. Wagner said it is less painful than the bone marrow biopsy. That they don’t actually tap the spine, but they tap a column full of fluid. So, that was of some comfort.
If leukemia is found in the spinal fluid, then chemotherapy is implemented to eradicate it, as well as radiation on the cranium.
Dr. Wagner reiterated that with AML, the only curative methodology is a bone marrow transplant. So, it’s this or nothing, regardless of how daunting a prospect it is. Ideally, the BMT is done during the first remission, which is the main reason time is of the essence. The odds of survival go down if it is done in the 2nd or 3rd remission. If George were to get refractory disease (cancer stops responding to treatment), they go down even more. Scary stuff and all out of our control.
The first thing the BMT team will do is make sure you’re a fit candidate for transplant. They will test three things: 1) heart, 2) lungs/breathing and 3) social situation (make sure you’re not living under a bridge and have a safe, supportive situation to go to once you’re released from the hospital). It’s important to make sure the heart and lungs weren’t damaged in any way during the previous chemotherapy treatments. All these tests can be done on the same day, which is good. They will also do CT scans and MRIs to check for occult (hidden) infections. Then they will have a “clearance visit” to go over all the results with George. Oh – he will also have to get clearance from his dentist saying there aren’t any dental issues that could cause problems when his immune system will be down as a result of chemotherapy.
In order to receive a transplant, three things must come together: 1) you must be in remission 2) you must be in good physical shape 3) you must have a donor. Right now, we are confident George has 2 out of 3. We just need a donor. I will cover that in my next post.
I know this posts seems almost like a clinical write up. It’s just how I process and communicate things. Here, in our home, there are bouts of sorrow, weeping, and fear. Bouts of “why me?” and “this is so unfair.” We hug a lot and talk a lot. We cry some. And love a lot. We pray a lot. We try to live in the moment, in the present day. We are so thankful for the support and prayers for George. They mean so much.