Diagnosis: Acute Myeloid Leukemia (AML). A Journey

Were not what we were hoping for.

Of course, blasts are the immature white blood cells that are the main characters in everyone’s AML story. Over 20% means you have leukemia, so it’s not that. But you must have below 5% to be in remission, so it’s not that either.

That means the bone marrow transplant has been delayed. No August 23rd hospital admission date. George must first have less than 5% blasts in his bone marrow to move forward with transplant.

So, he will start a round of chemotherapy on Thursday. He will do the same regimen he did last time – venetoclax pills and azacitidine infusions. He will get the infusions once a day for seven days and take the pills for 21 days. We are hoping this will put him into remission!

Dr. Loren advised George that she would also like him to consider participating in a clinical trial. The study is being conducted at UPenn in order to evaluate an experimental drug called CART-38 cells in patients with Acute Myeloid Leukemia (AML) and Multiple Myeloma (MM).

So, this research study will take some of George’s white blood cells, called T-cells and modify them to target his cancer cells or cells that help cancer grow. The modification is a genetic change, or gene transfer, to his normal T-cells. The type of modified cells given in this study are called CART-38 cells. CART-38 cells target a tumor marker on AML and MM patients called CD38. CD38 is a protein expressed on the surface of the cancerous cells in patients with AML and MM. By targeting these cells, CART-38 may help control George’s AML. These CART-38 cells will be given back to him intravenously (IV- through a vein in his arm).

The purpose of this study is to test whether CART-38 cells are safe to give patients with AML and MM and will also test how CART-38 cells affect AML and MM cells and how long CART-38 cells survive in the body.

Well, that sounds kind of scary….the researcher wants potential subjects to understand that this clinical trial is an experiment. By its nature, that means the answer to the question “are the cells safe to give to patients?” is still unknown. And there is a list of potential known side-effects and of course, some are unknown.

After reading the entire Informed Consent package, we expressed our reluctance to Dr. Loren, saying “Hey – if a bone marrow transplant is still on the table, maybe George will skip this clinical trial and just move ahead to transplant without it.”

She responded by asking George to at least meet with the researcher and discuss the trial and process, etc.

So, what were the questions I asked this last week? Well, like she said..it had to do with confidence that this second transplant will work when the first one didn’t. More specifically, I think I asked “George had the myeloablative conditioning treatment before his last transplant (Intense chemo and total body irradiation) to eradicate his marrow to prepare for his new donor cells and his cancer came back. He can’t have that intense conditioning this time because his body has been weakened by all it’s been through, so what makes us think it won’t come back again? ” In other words, if his cancer came back after being nepalmed with chemo and radiation and this time he can only have a less intensive chemo, it seems like he has a greater chance of relapse than the first time. Yes, that’s true she said. He also has those negative markers I talked about in my last post (ASXL1 mutation, previous MDS, deletion of the long arm of his 7th chromosome, CD34 marker, relapse within less than a year after transplant, and now the new genetic translocations..) That was another question I had for her.

So, the way I am looking at it is that the CART-38 cells would take the place of the radiation he can’t have this time. Maybe that’s dumb, but that’s how my mind works. I have to make it make sense to me.

According to the Informed Consent Form, George is being asked to participate in the clinical trial because he has AML that has failed previous treatment.

So, George has an appointment with Dr. Lai, one of the leaders on this research study, on Thursday to get more information and ask questions. If George consents to participate in the study, we believe they will collect his cells at the end of September. He will be admitted to the hospital to receive the modified cells at a later date.

We have a lot of questions and I’m sure you do too! All we know is, we want to do whatever gives George the best fighting chance at beating leukemia and living a long life.