Chronic Questioning With Chronic Myeloid Leukemia

It is easy for others to forget the chronic nature of chronic myeloid leukemia (CML), but I do not have the luxury of forgetting.

In October, I will mark the 10th anniversary of receiving the news that I had blood cancer, a rare kind, to be exact. CML occurs when chromosomes 9 and 22 “translocate,” to form a mutated gene, BCR, ABL.

Genetic, but not hereditary

On that fateful day, the hematologist/oncologist told me the condition is genetic but not hereditary. At the time, I did not know the difference. I also did not know a thing about chromosomes, blood, or leukemia, but I do now.

Unfortunately, I have had to learn all the intricacies of CML. I have spent many a night googling and reading up on all the blood tests, their initials, what they mean, etc. That is not to mention all the questions with which I would bombard the doctor.

Ten years of questions add up

Especially earlier on in my blood cancer journey, I would ask the doctor, “What’s that?” whenever the various abbreviations on blood tests would appear red and marked high or low on my chart.

He would say the name. My next questions would be: "What makes it high?" (Insert voice giving an explanation) or "What does it mean?" The follow up question was usually, "What do you do about it?"

Many times, not all, the doctor would reply that nothing would be done until the next go around of tests to see if it is a “blip or a trend.” Blips come and go, sometimes an error with the blood test itself or a fleeting infection or something like that.  Trends are more alarming. They have to be tracked.

Stressing out is not recommended

However, I am urged not to stress out either way, because, you know, stress makes the condition worse.

Yes, I know but now I just raise an eyebrow when he starts to say that.

He once told me not to be alarmed unless I see a sharp, spike upward on the graph that lasts for a while. So, in December 2022, when my tyrosine kinase inhibitor (TKI) stopped working for many months and my rate of leukemia jumped tenfold between appointments, my question was: “Remember when you said if the graph was shooting up like that…?”

Yes, of course, it was time to move on to my third TKI, a so-called “salvage,” drug after two TKI failures. The first drug worked for about a year and the second one for seven years. Until it did not anymore.

Questions and more questions

When the change was made, I had a lot of questions—because of course I did.

The conversation went something like this:

“What if this new TKI does not work, then what do I do?”

“Many patients have had great success with it. It will work.”

“What if it does not though, do I go back to the previous one? What if that one still fails?”

“Give it a chance, Susan. Try not to stress out. Another test in a month or two and we will see how it is going.”

And so on.

During this very dark period in my treatment, I questioned something red on the computer screen and wanted to know why it was like that.

“You know this, Susan,” the hematologist kept telling me.

I normally would have remembered but I was so worked up about the downhill 'trend," that I wanted an explanation and a complete one at that.

So, I got it along with moments of sympathy like, “I’m sorry this is happening.” And my reply, because I am naturally sarcastic, “Yeah, so am I.”

Blame It On CML

Recently, although the TKI is now working, I have been experiencing a lot of extreme other symptoms that have thrown everything off its axis and made life rough.

The last visit, I questioned why my CML was causing me so many problems when the leukemia numbers looked pretty good.

“Not everything is about CML, Susan,” I was told.

“No? Well, I blame it for everything that is going wrong because I do not know what else to blame.”

It has been my constant companion for a decade so why wouldn’t I?

Although the above makes me sound like a demanding, (dare I say a bit obnoxious) patient, I am a reporter by profession, and well, asking questions is a major part of the job.

Besides, I must add that before the doctor leaves the room, he usually says, “Do you have any more questions for me?” Since day one.

And, on the rare occasions when I have to ask about a drug interaction or something where his go ahead is needed via email, he will say, “Thank you for emailing me and asking me that."

So, it is never a bad thing to ask questions. In fact, it is essential. When your health is the issue, shyness has to take a back seat.