Diagnosis: Acute Myeloid Leukemia (AML). A Journey

George had his bone marrow biopsy on Wednesday, Sept 13 and for the first time, we had to wait almost two hours for him to be taken back! Poor thing was starving, as he couldn’t eat. As always, everything went well and he was ready for a snack when he was rolled back to recovery room!

Before the bone marrow biopsy, George had an appointment at the apheresis center for a pre-donor evaluation for the CD38 directed CAR-T cell therapy clinical trial. He met with a nurse, who gathered information from him and then explained the cell collection/ apheresis process. Ahperesis means your blood is removed by vein and the blood components are separated by a machine so that the lymphocytes, or white blood cells can be separated from the rest of your blood, which includes the red cells and platelets to obtain the T-cells for research and cell treatment purposes.

George will go in early the morning of September 19th and have a central venous catheter placed in his jugular vein in his neck, with the help of some local anesthesia. George hates this part and it’s kind of freaking him out. The good part is, he will have it inserted, have the apheresis and then the doctor will remove the catheter and he will go home! So, it’s just for the procedure, not like the PICC line in his arm which he has had for over a year! Anyway, the catheter is connected by plastic tubing to a machine that will process a portion of his blood. His blood will flow from his vein to the machine and back to his body through his vein. Some of the blood (3-4 tablespoons) will be diverted during the apheresis procedure and collected for the research testing. The apheresis machine will remove some of his white blood cells and will return his blood (minus some white blood cells) to his body. Think of a dialysis machine. Kind of works that way.

The whole procedure will take three or four hours and we were told to bring snacks and something to entertain us. There’s a lot more to it, but that can be covered in the next blog when he actually has the procedure.

Dr. Cross came in and did a quick, superficial exam and went over the same stuff the nurse, Jillian did. He asked if we had any questions and we didn’t. Having two different people explain it and we were good! So, George read and signed the consent form.

Now we just have to wait for the results of the bone marrow biopsy and the test to come back verifying that he has the CD38 antigen so he will qualify for the clinical trial and that George’s blasts count is less than 5%.

Flash forward to today (Friday)! I was out shopping and I got a text message from George saying there are new test results in the portal, but he was too nervous to look. I didn’t think it could be bone marrow biopsy results already. It had only been two days. I told him maybe it’s the CD38 test results and that I would look and let him know.

So I looked. And it actually was his bone marrow biopsy results.

Then I saw the results for the CD38 test. Apparently, they were unable to conduct that test because the specimen they drew from George’s marrow was poor and not viable. WTH? It seems they got the spiculate from his marrow, but not the liquid, which is what they need for the test.

So….Dr. Loren called and first thing she said was, “Don’t worry about any of those results. Everything looks good.” Gonna have to call bullshit on that, but ok. Anyway, she asked George if he would be able to come in early Monday morning and undergo another bone marrow biopsy in the office without sedation so they can get that CD38 test and get him qualified for the clinical trial before his apheresis appointment on Tuesday. Tetyana will do it and it won’t be as bad as it normally is because she only has to get the liquid, not the spiculate (the bony part). So of course, George said YES. Dr. Loren was so apologetic and so grateful George was willing to come back in and we were like, of course we want to get this all done ASAP! He has had one bone marrow biopsy done in the office without sedation and it wasn’t too bad, he said.

Oh, also we got the results from his labs that were taken on Thursday (yesterday). George’s hemoglobin was 7.9 (normal starts at 14 and anything under 8, they will recommend a unit of blood). I said, “George – they’re going to call you today to get blood!” Sure enough, about an hour later he got a message from Ali asking him if he wants blood ( we both hate that – TELL me if I need blood, don’t ask! You’re the expert!). He said, since he was planning to get out and walk this weekend, it might be good to have a little more energy, so yes please.

PSYCH! There are no infusion chairs available today! Emergencies only! So he is going to have to wait until Monday when he gets his labs and then maybe they will fit him in then.

We are going to just try and relax this weekend and not think about everything. There is SO much to think about.

One day…one thought…at a time.