FAQ Part I: Medical Questions

I am going to begin a series of posts that answers some frequently asked questions from friends and family members. This is the first of that series and pertains to medical questions. If I think of additional medical questions, I will include them here by updating this post rather than write a new, separate post. Also, feel free to include questions in the comments. I may answer them in the comments or include them here.

1. Why is it so difficult to obtain an overall survival rate or prognosis? What is your overall prognosis? If you want to try to understand my overall prognosis, there are several factors that you must consider. Because all factors are relevant and must be included in order to get an accurate answer, oncologists differ widely in their predictions. Finding a study that accounts for all such factors is very difficult. For example, you might find a study on relapsed acute myeloid leukemia patients; but the research might have been conducted on a population over 60 years of age. Also certain factors are more determinative than others; i.e., being younger helps a lot, while being male may not make much of a difference, if any.

I am not going to provide a hard number for this blog until I speak with an actual transplant specialist. The overall prognosis that I hear from oncologists varies greatly, and they are reluctant to comment on the odds for an allogenic stem cell transplant. However, they all agree that without the transplant, my chances are nearly zero. Once I hear a prognosis, I will report it here.

Here are the factors to weigh, in no particular order:

• Acute myeloid leukemia (AML): There are several types but this is this the most common for adults. AML is not rare, but my genomes are.
• Inversion 16 (a genome), which is usually written as inv(16): This is very favorable and causes many oncologists to be optimistic.
• FLT3-TKD (another genome): Unfavorable and causes other oncologists to be overly negative. The fact that I have both inv(16) and FLT3-TKD is very rare and studies are often inconclusive about my overall prognosis. Additionally, do not conflate FLT3-TKD with FLT3-ITD, which is more common and has a very poor prognosis. FLT3-TKD may have a better survival rate than FLT3-ITD.
• Male: This should not be weighed heavily, if at all; but I have seen studies showing that males have a slightly higher mortality rate--very slight.
• Age, 33 years old: The younger you are, the better your chances. I will have a much higher survival rate than a man in his 60s. In fact, most of the elderly are not even eligible for a transplant because they cannot tolerate the procedure.
• Relapsed or recurrence, meaning this is my second time: This is very negative and weighs heavily against me. I relapsed slightly over a year after my last treatment, which is fairly quick according to oncologists. The longer it takes to relapse the better.
• Complete Remission after induction chemotherapy: I achieved complete remission after induction chemotherapy, which is good. One study noted that without achieving complete remission from induction chemotherapy (the first round), chances for survival are below 10 percent.
• Complete Remission prior to transplant: It is crucial that I remain in complete remission throughout the transplant process.
• Factors affecting the transplant itself: This procedure is not based on blood type. Instead it is based on the HLA count (human leukocyte antigen). The number is out of ten, meaning an HLA count of 10 (AKA a “10-count match”) is better than an 8-count match. I believe 6 is the minimum to proceed with a transplant. As far as I know, I am expected to receive a 10-count match. This is very good news in that it decreases the mortality rate of the transplant itself and it reduces many of the negative side effects from the transplant. However, I am unsure if it affects my overall survival rate (other than the fact that it lessens the odds that I die on the table).

2. If you are in complete remission why are you doing more chemotherapy and a transplant? Without additional chemotherapy it is highly unlikely that I will remain in complete remission until the transplant. Second, because my cancer has already returned and resisted the chemotherapy in the past, it will likely resist additional chemotherapy regiments. A transplant is the only means of curing relapsed AML.

3. Will you be getting a transplant or chemotherapy? Because this is a recurrence, I will be getting an allogenic stem cell transplant, which is the transplant that comes from using the bone marrow of another patient

4. Can I donate my marrow and is it painful? There is a database that you can join; it is easy and you sign up online. After signing up, I believe you go somewhere and give a sample by having someone swab your cheek. They will then call you if you are a match for someone.

Do not do this if your only goal is to see if you match for me; do it to help others if you are so inclined. Although I sincerely appreciate the thought, your chances of matching with me are less than one percent. Only siblings have a high chance of matching.

The old method used to be painful for the donor because they were forced to go in through the hip. The current method is relatively painless for the donor and the recipient. Also, the donor recovers fairly quickly. The recipient on the other hand can have a long and painful road to recovery.

As of now, I have a nearly perfect donor match!

5. Why do you stay at the hospital so long?

• Chemotherapy: The chemotherapy that is meant to kill leukemia also kills off the surrounding blood cells, including white blood cells. This causes the immune system to drop severely such that the patient’s risk of infection prevents him from being discharged. The patient must remain in the hospital until his immune system recovers to the extent that his body can naturally fight off an infection.
• Induction chemotherapy is the initial round of chemotherapy. It is strong, blood cells drop immediately, and it takes longer to recover. Induction chemotherapy results hospital stays of a month or longer.
• Consolidation chemotherapy begins after the patient achieves complete remission from induction chemo. The purpose is to maintain the state of complete remission. These regiments are less potent than induction chemotherapy, and blood counts take longer to drop. Once the blood counts recover, you rinse and repeat consolidation chemo until the oncologist is satisfied that it is no longer necessary.