Lymphocite Doubling Time

[CRC4747]

Just had my second virtual meet with Hematologist. Diagnosed with CLL back in November. I live in a relatively remote community in British Columbia so all my communications with doctor and hematologist have been over the phone and very short. Between November 2022 and May 2023 my lymphocite and white blood cell count doubled. My hematologist says he is not worried as numbers still low. Will do blood work again in 6 months. I get what information I can from the WEB and it suggests it might be aggressive. I do get winded and tired versus what I used to be but I am 67 and wonder if it is age or a just in a funk as it tends to come to mind off and on. Just wondering if I might be able to get insight from some who have experienced similar track. Sounds like this is a different journey for everyone but always a good idea to have information. Be an optimist but also a realist I say.

My thanks in advance for any insights and all the very best to those with all forms of cancer.

[AussieNeil Administrator]

That's actually encouraging news to hear about your specialist, because lymphocyte doubling time is probably the least important reason to start treatment. Provided you are otherwise well and you don't meet any other trigger for starting treatment, there's plenty of room for lymphocytes to grow in your blood without concern. Oncologists who lump CLL in with other Lymphomas, sadly opt to start treatment when the lymphocyte count gets to around 100, but CLL lymphocytes are small and not sticky. They are barely larger than red blood cells and need to increase to around a count of around 4,000 (commonly 4,000,000 on US test ranges) before they are as common as red blood cells. The highest lymphocyte count I've heard about for CLL was 1,400 (1,400,00 in the US), reported by Dr Thomas Kipps. Some of the common patterns for changes in lymphocyte counts over time are plateauing and even reversing.

Platelet, haemoglobin and neutrophil counts are the really important blood counts.

How low are your lymphocyte counts by the way? The iwCLL guidelines suggest a threshold of 30 before getting really starting to track doubling time.

Neil

[CRC4747 in reply to AussieNeil]

Thank you for the response. Gives me good insight

[CycleWonder]

Welcome to the best site for information on CLL. It is a shock to be diagnosed and CLL is an odd duck. It is disconcerting to be diagnosed and then told to wait. You would like to do something. We often call “Watch and Wait” by “Watch and Worry”.

A good habit to develop, and it takes time, is to take heart that your doctor is not worried. I found this to be very helpful. My CLL specialist actually told me that if he’s not worried, I shouldn’t be worried.

There are steps you can take now that may help you further down the road. If you have procrastinated on any vaccinations, now is an excellent time to get those taken care of, such as pneumonia, shingles, flu, tetanus, and Covid.

If you already have an exercise program, ramping it up will be helpful. If you don’t exercise now, starting may help you. Exercise is thought to strengthen your T cells (these are part of your immune system). Also, being outside is soothing to the soul. It has been suggested that exercising also helps people with potential side effects from medication down the road.

Eating healthier is always good and many have different opinions in what this means.

You mentioned fatigue that comes and goes. Fatigue is a symptom of CLL but it wasn’t until I needed treatment that I understood the difference between CLL induced fatigue and the normal blahs we all feel from time-to-time. I learned that there can be many causes of feeling tired and that early on, CLL is less likely to be the cause. For me, my tiredness was due to back pain. Once I dealt with that, I felt much better.

[scryer99]

As folks have said, doubling rate can mean different things depending on your starting point. If your ALC counts are < 30, it probably doesn't mean much yet. If they're 100 and doubling that fast, it's a different story.

ALC counts are reported differently in different systems. US tests tend to report in 1000s per microliter, or 10 ^ 3 / µL. So my "4" might be your "4000"

Mine doubled every 3-6 months. 5 at diagnosis, got up to 150 or so at 18 months, spiked to 300 after a spleen issue, and 300 at treatment start after some bridge medications to manage impacts. My genetics however did not come back with any of the common "hard to treat" indicators and treatment in my Phase 1 trial is going well.

I had fatigue pretty early, and it built up over time. Now that I'm in treatment and recovered somewhat, I realize I felt pretty terrible in the Watch and Wait period, but that really was more with ALC counts 50+, and some associated platelet and hemoglobin declines. So it's not out of the realm of possibility that your fatigue could be CLL related but it could also just be age-related.

Exercise is the one proven thing that helps. Diet and supplement response tends to be individualized. I did have good luck with B12 supplements after my oncologist recommended them in my case.

You can read more on my profile and post history.