When should I start treatment?

If this isn't the most important question the newly-diagnosed CLL patient needs to ask, it's in the top five. And it's for these reasons:

1. The first treatment is most likely to give the patient the longest and best response to treatment.

2. The CLL cells haven't been exposed to any treatment, and thus generally consist of nice, 'squishy', easy-to-kill CLL cells. None of your cells have been through 'chemo boot camp', thus aren't toughened up by 'combat'.

3. The patient generally is in as good of shape as he ever will be.

4. The choices for treatment are wide-open (all things considered). The oncologist can generally offer many different treatment modalities.

So, how can the patient decide when he needs treatment? Well, I suppose the simple answer is that he can't, at least by himself. He needs to do so with the assistance and the guidance of his oncologist.

At this point, let me make it clear that my perspective comes not from a medical background, but from that of a patient who has survived over 10 years with CLL, and, more importantly, have researched the topic in some depth.

There are two proven guides to when treatment might be necessary. One is the stage of your CLL (stage 0=1 is unlikely to need treatment, but it may). The second, and over-riding one to me, is the doubling time of the Absolute Lymphocyte Count (ALC). (The count is easy to derive: take the total white blood count, and multiply by the percentage of that count that are lymphocytes. In other words, if your WBC is 100, and your percentage that are lymphocytes are 90%, then the ABC is 90,000.)

You've probably seen a number of sites and posts which offer the ability to enter in data which will then produce a graph. Excel is spreadsheet which allows one to chart blood numbers, there are others as well.

Starting with the blood counts taken at diagnosis, I recommend creating a spreadsheet and entering at least two data sets: the absolute lymphocyte count and the day the blood was taken.

I've worked with a spreadsheet from scratch, but you don't have to do that. You can download a spreadsheet ready to enter your blood numbers from CLL Topics: www.clltopics.org/YourCharts.htm .

Once you have developed a worksheet, you can add to it with each blood test. Let's assume you have fairly stable absolute lymphocyte count (other data such as the total white blood count won't work). This is typical in early CLL. Plot each value, and pay attention to the trend. To make the trend more clear, create a chart using time as the x-axis and the ALC as the y-axis.

One tried and true indication that treatment might be in order is when the absolute lymphocyte count (ALC) shows a pattern that will result in the number doubling in less than one year. (Check with your oncologist to see if this is how he views treatment decisions.)

Once you start plotting data, thing those of you are going to need treatment will see an obvious jump in ALC. The trend must hold for some period of time, or over several tests.

It is at this point that something has changed in your CLL. Perhaps you have picked up a change that causes your CLL to start proliferating at a higher rate. Perhaps for some reason your CLL cells are not dying at the same rate they were previously.

In any case, I personally think this may mark the best time to hit your CLL.

The other indicator that treatment might be considered is your stage. If you are diagnosed with a stage IV CLL, you probably have noticeable illness in terms of a low platelet and/or hemaglobin number. I'd still chart out your ALC and share with the doc to see if the disease is making a move.