Diagnosis: Acute Myeloid Leukemia (AML). A Journey

Well, we are three days out from hospital admittance and today, we met with the radiologist. As I previously wrote, George will enter the hospital on Saturday, July 2nd. On Sunday he will start chemotherapy for two days, then on Tuesday he will undergo total body irradiation (TBI) for three days, twice a day. On Friday July 8, he will receive his new donor stem cells (“Day Zero”).

We met with Dr. Paydar’s nurse first to answer a bunch of health history questions. Next, someone from telemetry team came in to measure George for the radiation he will receive. Not exactly sure why they do this, but we just do as we’re told…or should I say George does! I just sit there.

Once measuring was completed, Dr. Paydar walked in and my first thought was, “She looks 16 years old!” But she was extremely knowledgeable and put us right at ease. She started by having George sign a consent form. Then she explained what the process would entail….they will go and get George at about 6:30 in the morning for his first dose of radiation, which should take about 20-40 minutes. They try to do it early, because there must be six hours between treatments and they have to do another one later in the day. He will lie on a table on his side and they will irradiate one side of him, then the other.

Next, Dr. Paydar went over some of the possible side-effects from the radiation. Short term side effects can include nausea, vomiting and fatigue. We kind of already knew that. Also skin irritation.

Then she talked about the possible long-term side effects. George will be at greater risk for cataracts and for thyroid imbalances in the future, both of which are manageable: cataracts with outpatient surgery and the thyroid, with a pill. He can experience inflammation of the lungs during the first three month after radiation, which is treated with a steroid to calm them down. He could experience kidney damage as a result of the chemo as well as from the radiation, but it is uncommon.

Radiation and chemotherapy can cause secondary cancers down the line, such as skin cancer. Dr. Paydar said this is more probable in young children because they have so many more years to develop another cancer. TBI increases the risk of heart attack, but not a lot… like going from a 5%chance to a 6.5% chance. She said George’s heart looked really good and she didn’t anticipate that happening. From her mouth to God’s ear! There is also emerging data that TBI can cause calcification of the arteries…OY.

The doctor said she looked at the results of George’s EKG and PFT and said his heart and lungs look great, so that was some encouraging news! She said that this is a low dose radiation, which was comforting. And by low dose, she compared George’s three days to someone who has breast or prostate cancer, who would undergo radiation for 5-7 weeks. This will be a lower dose because the blood cells are very sensitive to radiation. Yay! My nephew had a brain tumor when he was a baby and he had to undergo weeks of radiation, poor thing.

George asked if they would protect his eyes and the doctor said, no..that they would have to radiate his eyes along with the rest of him. That’s because even though the chemo will wipe out the bone marrow and he didn’t appear to have any residual disease in his marrow, there’s always a chance that there is an errant cancer cell hiding somewhere. After all, the last bone marrow biopsy showed no disease, but as Dr. Paydar said, that was just one random sample of the marrow. The radiation will not only kill any cancer cells that the chemo may have missed in the eyes, brain, etc, but it will prepare the bone marrow for the new donor cells and weaken the immune system to help keep his body from rejecting the donor cells after transplant.

Despite all these risks, it’s still the best option for George. All the doctors who have cared for George, whether while he was hospitalized or was seen as an outpatient agree. That’s because if the leukemia were to come back, to would be hard to manage and this is the only thing that can lead to a cure. Thats our goal!

Dr. Paydar said that starting this procedure over the 4th of July holiday weekend was good luck! Then she admitted she just made that up…but we are going to hold on to that.