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W&W Once Again (#1)

Posted by Frederick Wasti
Dec 09 2012

When people are diagnosed with CLL for the first time, it is unusual for them to need or receive immediate treatment, and, in general, CLL patients upon diagnosis generally begin a period of months or even years (depending on how fast their disease progresses) of "watchful waiting" (or "watching and waiting") (or perhaps "watching and worrying") before they finally start treatment. (Statistically, it has been shown that prompt treatment for CLL is not helpful, and, due to the side-effects of the treatment, it may do more harm than good in the long run, so the first "treatment" for nearly all CLL patients is "no treatment".) In my case, I was in W&W status from September of 2010 until March of 2012 - about a year and a half - before I started treatment at Dana-Farber.

Now, however, I seem to find myself back in W&W status once again. Oh, it's different, in that I am still being treated once every other week, but the big question on my mind at the moment is what will happen to the state of my CLL during the Part C "maintenance" period. Will it stay very low, or will it start coming back, and, if so, will it grow slowly, or will it grow rapidly? So, in other words, I'm back to "watching and waiting" once again...

At the moment, in Part C, my blood is to be tested every other week (on those days that I go to D-F for treatment), and I will be looking forward to seeing each new set of test results with increased anxiety. (And, I assume that I will still have occasional periodic bone marrow biopsies and CT scans, too.) In between, though, it's W&W time. So, while watching, and while waiting, I would just like to take a look at my blood counts as they are right now (well, from almost two weeks ago, the last time my blood was tested), to see where I stand, at least for my white blood cell counts, after being graduated from Part B to Part C. And then, tomorrow, I will be back at D-F once again, for treatment and for some more blood testing.

So, on to the graphs...

If one were to look at just my total white cell counts, it is clear that I had far too many white blood cells before treatment began, but, since the summer, my leukocytes have been basically within the "normal" range -- I have added a couple of green lines to show the approximate proper lower and upper "limits" of white cells (which are "officially" given as 3.8 and 9.2, in thousands of cells per microliter, on my D-F lab printouts), and you can observe that I have been within or at least close to the "proper" range for quite a few months now.

Looking back even further, using data from the last decade or so, it is clear that my leukocytes have been too numerous for some time now, even though it was not all that many years ago that I did have normal white cell numbers...

Of course, the total leukocyte count is only part of the story. Since the various types of leukemia involve only certain types of white cells, we have to take a look at what ~differential~ white blood cell counts show. In my case, with Chronic Lymphocytic Leukemia, it should be obvious that it is the state of my ~lymphocytes~ that is important, right?

Taking a look at the absolute number of lymphocytes since my clinical trial began (with added lines for the "official" lower and upper limits for the normal range of 0.5 to 2.6 thousands of cells per microliter),...

...it is clear that I was significantly above the normal range when treatment began, but then rapidly declined during Part A, and then basically "bottomed out" at the beginning of Part B. Going back further, to the time of diagnosis,...

...it is evident that my lymphocytes had already "out of whack" for quite a while (but, note that they are "out of whack" again, now by being abnormally low).

I do want to take a look at the neutrophils also, since they had been negatively impacted by the lymphocytes running amok. In the following graph of the absolute number of neutrophils (with added normal limit lines for 2.0 and 6.4 thousands of cells per microliter) during my clinical trial,...

...it can be seen that the neutrophils have gradually increased during the trial (and may even be slightly higher than normal right now), but it is also worth taking a look at the neutrophil count since I was diagnosed...

...because it illustrates one of the reasons that treatment was started (i.e., one of the reasons why my original W&W period had to end) - my neutrophils had become so crowded out of the bone marrow by rampaging lymphocyte production that they had starting dropping too much to ignore any longer. Both absolute neutrophil graphs do show the effectiveness of my treatment, however -- once the lymphocytes were brought under control in my marrow, neutrophil production did improve significantly.

OK, just one final graph for today's entry. This is one that's a bit more complicated in that it's a double graph, but it's one that I've used several times before, so, if you're a regular reader of this blog, you're already familiar with it. However, I did complicate it a bit with additional normal range limit lines, so it'll take a bit more concentration on your part to see what I am trying to show today. Ready? Well, OK, here goes...

Unlike all the previous graphs for today's post, which showed actual numbers of cells (in thousands per microliter), this one is showing proportionate percentages of two types of cells, lymphocytes (in red) and neutrophils (in blue). However, I have added limit lines for the normal percentages of these two types of cells (using the same color scheme), and that does make it a bit cluttered looking. However, besides showing the fact that my lymphocytes and neutrophils have reversed places as my #1 and #2 most common white cell types, as a result of treatment, it also shows that, while my white cells were unbalanced at the start of treatment, they did actually fall within the normal ranges for each towards the end of Part A, but then, immediately at the start of Part B, they became totally unbalanced in the opposite direction.

So, I am in much better shape than I was in at the time treatment began. There is a certain amount of "normalcy" in some of the graphs now, and in some of the numbers behind them. But, there are some serious abnormalities, too, the most obvious one being that my lymphocytes (both good and leukemic) have been kept artificially very low in number (and, as a result, I still take daily antibacterial, antiviral, and antifungal medications to help my suppressed immune system keep me as infection-free as possible).

Well, tomorrow will bring a new set of numbers, and I'll be watching, and waiting, to see just what might be going on... W&W...

 

Categories: Leukemia