Diagnosis: Acute Myeloid Leukemia (AML). A Journey

Well, I haven’t posted anything in a while because honestly, we have just been in what seems like a holding pattern until George gets his second bone marrow transplant in July. But, now that may be delayed.

George started his chemo rounds in February and has now undergone 4 cycles. The last two were with the new drugs since the doctors believe he got that nasty lung inflammation that landed him in the hospital as a result of drug induced lung injury.

He also has been getting his labs taken twice a week to monitor his blood counts so he can receive blood or platelet infusions if his numbers drop too low.

Yesterday was a busy and informative day. George had his hospital discharge visit with his pulmonologist, Dr. Heyman. She had him take a pulmonary function test (PFT) when we first arrived. Then we were taken back to a consult room to meet with her and go over the results of that test and the CT scan he received the week before.

The CT scan showed good improvement from the last one he had while hospitalized. Good news! The doctor said that means the choice to treat with steroids was correct. So, it’s time to taper down the Prednisone dosage more, in a conservative and slow manner, which means he will be on steroids until mid-July. That will most likely delay George’s transplant because Dr. Heyman said Dr. Loren will most likely not want to do the transplant while he’s still on steroids. So, she will consult with her and then we will plan for the next few months.

She also said she strongly suspects that George did NOT have drug induced lung injury, but that he had post-COVID organizing pneumonia. You can read about it here…https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9780828/. She made this decision based on the timing of the appearance of the horrid cough he had and how it has responded to steroids, rather than antibiotics or other treatments.

He did well on his PFT, but of course not as well as the one he took last year to clear him for his first transplant. His lungs have been through A LOT! He will need to get clearance for his lungs to undergo the chemo regimen for the second transplant. I’m not sure where he stands now, but Dr. Heyman encouraged him to get out and walk/exercise his lungs. He has been doing well, walking 2 – 2/12 miles when he gets time to get out to the track. He has to be careful of sun exposure so he likes to go in the early evening. He will go back to visit Dr. Heyman in July when his steroid taper is complete, provided no issues arise during the taper.

Also, George received a phone call yesterday morning. The team saw his blood work from the day before and wanted him to go in for a blood transfusion due to low hemoglobin numbers. Luckily, they were able to work him in after his appointment with Dr. Heyman so we didn’t have to make another trip to Philadelphia!

George has a bone marrow biopsy scheduled for June 13, but I have a feeling it will be rescheduled. I suspect it was scheduled to make sure George’s marrow is clear of AML before the transplant, because he must be in remission to undergo transplant. As I wrote about before, he can still undergo transplant with MDS, which he currently shows positive for.

Also, changes going on in the hospital. For the first time since his AML diagnosis, the mask policy has gone from mandatory to optional. Except for on the cancer floors. Why? BECAUSE MASKS HELP STOP THE SRPEAD OF DISEASE.

That’s all for now! George feels good, except for shortness of breath when doing certain tasks (shower, climbing stairs) and dizziness when going from seated to standing position. Hoping the blood transfusion helps with some of that!