Diagnosis: Acute Myeloid Leukemia (AML). A Journey

We actually got the preliminary results from George’s bone marrow biopsy on Friday, June 30th, but I opened them first and when I read them, I chose not to tell George they were available. Why? Because I saw words that I knew would cause him stress and fear….”increased blasts” and “the findings are consistent with residual/recurrent MDS/AML.” He does better if he’s kept in the dark about distressing facts and it helps him stay positive. He appreciated me doing this so he could enjoy his weekend and not spend it wringing his hands and letting his imagination run wild.

Now, we knew that George had MDS and we were ok with that because he could still receive a bone marrow transplant with MDS. But the “increased blasts” worried me more because that sounds like AML and he can’t have a transplant until that’s in remission.

So, I thought…you know, I’m not exactly sure what I’m seeing here and no need for George to be worrying every day over these results when we are going to see Dr. Loren in five days. I thought if there was something worrisome or urgent, she would call us.

Welp, on Monday afternoon, George’s phone rang and it was Dr. Loren. She said she was calling because she was sure we had seen the BMB results and wanted to discuss them with us. George was like…huh? And I said, yes I had but had not shared them with George yet. So, I ran and got the print out I had generated and handed it to George.

She began by addressing the “increased blasts” item and said that while 20% blasts and more was definitely leukemia, George has between 7-15%. So, he doesn’t technically have leukemia….yet. But she feels he has too many blasts to go forward with the second transplant.

Dr. Loren gave us a couple of treatment options to mull over before we meet with her on Wednesday.

1- Start a regimen of venetoclax and decitabine to try get George back in remission.

2 – Enroll in a new clinical trial that is being conducted by one of her colleagues called CAR T therapy. It has been used successfully in patients with ALL, but not in patients with AML like George, although early trials are looking promising. So, what is it??

Chimeric antigen receptor (CAR) T cell therapy is a type of cellular immunotherapy that changes T cells so they are able to recognize and attack cancer. T cells are part of the immune system and develop from stem cells in the bone marrow. They help protect the body from infection and may help fight cancer. 

Several CAR T cell therapies have been approved by the U.S. Food and Drug Administration (FDA). All approved products use T cells taken from the patient. Some clinical trials use T cells taken from donors.

In both cases, the T cells are sent to a lab. There, scientists genetically modify these cells to produce a protein (called a receptor) that recognizes another protein (called an antigen) on the surface of cancer cells. This recognition allows the modified T cells to identify and attack the cancer.

The modified T cells are multiplied by the hundreds of millions and then infused into the patient to fight the disease.

So, if George chooses to go the chemo route, his transplant will be delayed by about 6-8 weeks. If he chooses the clinical trial, it will be even longer. Dr. Loren said he would be hospitalized for about two weeks with the clinical trial. She also said if he chooses the clinical trial, they would remove his cells and then he would proceed with option 1, the chemo. Then get the new genetically modified T cells.

This is all just preliminary information and we plan on talking it all over before we go see Dr. Loren tomorrow and then we will discuss it more with her. I want to ask her what she would recommend..if it was her family member.

Obviously, this was really sad news. So discouraging and honestly, crushing. We remembered that in the beginning of all this, we were told it was important for George to have his transplant during his first remission for the best odds for overall survival and success. What does that mean for him now? He has been in and out of remission several times. And how does the relapse after transplant figure into all that?

We both had a good cry yesterday. I adore this man and can’t stand to see him fearful or sad. It breaks my heart. I also can’t bear the thought of losing him. Hopefully we will feel more encouraged after we meet with Dr. Loren tomorrow. Thank you for your prayers and support. We are so grateful.