So I got the results of my FISH test. The FISH looks for 4 different defects in the cell. (I am probably explaining this like a newb, but hey..I am a newb...so there!) Turns out that most CLL'ers have one of the 4 major booboo's on their b-cell's that cause the CLL. Depending on which one it is, you can get a feel for your prognosis.
Well my FISH came back normal. At first I was like... yay! I is normal! And then a friend of mine who also has CLL pointed out to me that normal doesn't mean normal. (booooo!)
What normal means is that my CLL booboo is not one of the most popular 4. Popularity...pfft.
Here is the good news, its not the really bad deletion, 17p. (2.5 year overall survival or something like that). And here is the bad news, its not the tame, chillin 13q deletion (20 year overall survival or something like that). Its something unknown, mysterious, all smokey eyed and sittin in the corner of the dark bar, taking long drags off of an even longer cigarette, face hidden in the shadows lookin all creepy. People with this elusive deletion average a 9 year overall survival. That number is not good enough for me! What I have to remember is this. Its an average. An average! That means there are peeps with survival rates much longer than 9 years and (shhh) some much shorter.
What I need to ask the next time I go in is my mutation status. I know, what a weird disease. It sounds all science fictiony. Is there other diseases where you have to ask your doctor if your mutated?
Where CLL is concerned we want to be mutants. Mutation is good! Nonnutated is not so good. It goes like this:
One day, a progenitor cell decides to make a baby. When a progenitor cell (or, pluripotent stem cell, as they are also known) decides to make a baby, it can go one of many ways. It can make red blood cells or white blood cells. It can make lymphocytes or neutrophils, basophils, b-cells, or even macrophages! All of the components of our blood start from one stem cell.
Well, on this particular day, at this particular moment, Mrs. Pluripotent was gonna make a b-cell. b-cells are our memory cells in the immune system. They are the ones that remember when we've had a strain of the flu so we won't get it again. Very useful little guys. When Mrs. Pluripotent makes the b-cell, it is still a baby (awww). It has to grow all the way up and graduate from b-cell-school, to be a mature b-cell. In CLL, a break in DNA ( booboo) creates a problem. If the problem occurs when the B-Cell has developed (mutated) into a grown up, job holding, outstanding member of the blood community...its a good thing! However, if the booboo occurs when the B-Cell is still a baby, (unmutated), he never grows up. He hangs out in his moms basement, smoking dope, stealing money and running the car out of gas. This is a bad thing. (Thank you Sue Justis, professor of anatomy and physiology at FVCC, for my previous knowledge on how blood works)
What they have come to understand about CLL is that so much of ones prognosis can be determined by how far along in the growing up cycle the b-cell was when the weirdness began.
I am thinking that either my hematologist didn't order the test, or if he did, the physicians assistant that saw me in the office didn't have the results. In any case, I have no idea if I am mutated, or un-mutated. And I'll be sure to find that out on my next appointment. Yes I could probably call and ask if the test was done and what the results were...but sometimes, ignorance for a little while, can be bliss.
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