I'm going to see my Dr. in a few days, I m able to get blood work results on line beforehand which is great. I can't stand that waiting. So I am clear on the ALC and doubling time, but for the first time since I've been getting blood draws, my Absolute Monocytes have gone from 344 to 1389 in 3 months......ALC up from 18,000 to 21,000. I know that is OK So what do you think is going on with the AMC? My concern is the medical care where I live....a second opinion and perhaps better care is 3 hours away BUT if I had to begin, I would go for it. I would appreciate your experience and feedback Like others have said, I am so glad I found this group, its my go to for information and others going through this I in the states BTW.
Lorna
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lorna222
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Hi, thank you for that info, I didn't know their role....my White count is up to 30,000 the highest since I've had CLL in 7 years. I guess they go hand in hand.
My monocytes began increasing a couple of months ago, right about the time I had a difficult ear infection and gall bladder attack. I had several CBCs done within 4 months that charted the trend. They continued to increase even after gall bladder surgery and after the ear infection resolved or succumbed to amoxycillin and prednisone.
Normally, I have automatic CBCs with differentials, done by Quest Diagnostics. They use instruments that count and classify cells based on size, color (spectrometry), and electrical characteristics using technology called flow cytometry:
So my hematologist thought that the instrument was mis-classifying lymphocytes as monocytes because of some change in shape or color. So he ordered manual CBCs with differentials. He didn't think it was related to the CLL. I left there feeling dissatisfied - like leaving a movie 20 minutes before the end.
The manual counts said it wasn't lymphocytes, it was neutrophils - which look a lot more like monocytes than lymphocytes do! Such a plot shift!
I will see him on Thursday to see what he thinks the cause of high neutrophils might be. Oh, and he ordered another set of auto CBC with diffs. I should get the results of those any day now from Quest.
I was annoyed that my 10 year old copy of Janeway's Immunobiology had so little to say about them.So I started asking the Googlebird about neutrophils.
Neutrophils ramp up with infections and inflammation. I have no fever. I do have some body aches (don't we all?). I'm sure I have had multiple chronic infections for years. Then, something looking a lot like synchronicity happened - NewDawn posted about high neutrophils about a week ago, and I responded at length about my mis-adventure:
She posted some links there about stuff your doctor probably doesn't know about neutrophils. I suspect there should be a neutrophil specialist - a neutrophilistine?
Monocytes are also related to inflammation, and come in several flavors. They help phagocytize (eat) dead cells and present pieces of them on a platter for lymphocytes to try to recognize so that the lymphocytes can rally further response.
I'm still learning about all this, and I confess to high anxiety until at least thursday when we see the hematologist/oncologist, and probably beyond then, given the territory we're in.
My general sense is that CBCs are an ancient ritual only a generation or two removed from blood-letters and alchemists. They are by no means complete. Since CBCs were first developed using microscopes and staining, the total number of blood cell types has grown a great deal.
Specially trained humans can now see several types of lymphocytes (B-cells, plasma B-cells, helper T-cells, and cytotoxic ("killer") T-cells), and different forms of those can be distinguished based on developmental stage. All of that is ignored by the CBC instruments and manual cell counts that usually get ordered. But the doctors can order other tests to try to count them.
There's multiple kinds of monocytes, and I'm not yet aware of the billing charges for the tests that might distinguish those. I did some reading about it, and there's some odd disorders and at least one type of leukemia related to them. I have to remind myself, "When you hear the sound of hooves, think horses, and not zebras." I was gratified that the hematologist didn't order any really odd tests.
Counting blood cells is like counting vehicles on a highway. "Car, car, motorbike, truck, car, tractor trailer, SUV, SUV, jeep, car, car, truck with 4 doors instead of 2, van, car, car, tandem tractor trailer, car, car, etc." Then ask "what might all these vehicles be carrying, and what are their sources and destinations?" You have to pull them over to find out. And many of them stay parked at homes, garages, and at truck stops.
So I found myself asking myself, "Self, how do ya feel right now?"
And I answered myself, "Self, I feel nervous, let me tell ya. What could this all mean? Am I mutating into some new kind of alien? Wait, was that a zebra I heard? But, self, I don't feel as bad as I did when my gall bladder was spasming, or when my ear was hurting, and I could hear my heartbeat on that side because because the ear was blocked up. I knew what those symptoms were. So I'm just a little angry that none of these doctors seems to have a decent answer for me about this monocytosis/neutrophilia chapter in the mystery. But I feel ok in general. Tired, sure. But I've been more tired. Thanks for asking, self."
Well said Seymour! I'm not sure myself what to think when I have to bring research and articles to my Dr....scary indeed. I can't wait to tell him about this pain in my lower left abdomen that spasms....CT and ultra sound nada...I was going to go to the ER but I was in too much pain! How's that for irony. It is tough sometimes to keep a good attitude. I learn a great deal here on this forum which helps to keep the worry down. I too get Quest blood results, I think I will ask my Dr. about a manual blood test just to see his face....but why not go back to the basics? Combined with technology? Makes sense to me
Sorry to hear about the pain. I fear the ER, especially on weekends and holidays.
I would say, though, that if you are in that kind of pain, you may still have inflammation that doesn't appear well on CT or ultrasound. There's other blood tests, such as C-Reactive Protein, that can indicate hidden inflammation. That's one of the things my hematologist ordered last week. The other was ferritin. I've been short of breath, despite a good visit with the cardiologist late last year.
Lower left sounds like descending colon. If your diet has too much fiber, and you can get really gassy, you can certainly get spasms there. But the human nervous system can also do odd tricks with referred pain.
I do agree about having both manual and automatic tests. The automatic tests are supposed to be checked manually (at no extra cost) if there's anything on the lab's list of oddities. But the lab's list is a small subset of potential oddities. Having high monocytes while you have CLL is obviously not one of their oddities to trigger manual checks.
Also note that manual tests can be tricky, too. So there's rules for having other lab technicians and maybe a pathologist review oddities.
I haven't gotten the EOB's (Explanation of Benefits - for all of you outside the US who don't need insurance much) to see how much the manual costs vs the auto. I'm sure that's a factor in why auto is usually done. The doctor may have to justify the cost of the manual.
I was just re-reading your post....that short of breath issue...I wonder what that is? No heat yet to speak of in New Mexico, but also short of breath. At first I thought it was my imagination.
By the way, I did ask my Dr. when I saw him the end of April about the manual blood test. He has patients in one of the hospitals here and said he had just done a manual blood test the other day while there. He is sort of new here in my town, in the process of building his practice. It was nice to hear actually and he agrees, seeing the blood test himself under the microscope has value. He said it reminds him of being in med school.
I still have not gotten a good explanation for the shortness of breath. It's not all of the time, but it does tend to happen with exertion, especially bending and lifting. Not so much with aerobic exercise.
My latest manual counts two weeks after the previous showed BOTH monocytes and neutrophils up, though neither above normal levels. The hematologist seems unworried - or he plays poker well.
This piqued my interest in the the details of doing manual counts. I found some ancient (by internet standards) 1990s videos done by 2 educators that I really like. One of them (Pat) plays things pretty straight, the other (Gerry) zings a comment every now and then. She reminds me of real people in the lab I have known. I find them entertaining, and the 90s clothes are nostalgic.
The thing I take from these videos is that even in the 90s, there were no real standards from lab to lab. Different schools taught different methods. But there was an attempt to begin standardization. Another thing is what an art counting and differentiating cells is. I find it nearly impossible to distinguish lymphocytes from blasts in their video, for example. Cells can overlap. Use of the low power to get a feel, and then focus and lighting are everything. I'm sure it takes much practice.
You have to notice their counter when they show it - a mechanical set of buttons to press. It looks like this:
This is skilled work that computers and automated instruments today still have trouble doing. Most guys don't have the patience. Chances are, if a manual count is done, it's still done by a woman. It reminds me of the recent movie, Hidden Figures, about the black women who performed the actual calculations early in NASA's history:
I knew people who count cells for a living, and I have more respect than ever for their skill. I've been watching newer videos, too. There are so many potential oddities in a CBC, the mind boggles. I suppose that since my hematologist learned medicine in the 1970s, he doesn't get too shaken by numbers. He looks for trends. My current trends are strange to me - because I've watch slowly increasing numbers, with low spikes during infections for the last 8 or 10 years. Now there's more action in the numbers.
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Like others have said, I am so glad I found this group, its my go to for information and others going through this
Why we need to track the absolute lymphocyte count (ALC), not white blood cell count (WBC) to monitor CLL
Need your help on out of pocket cost for treatment plus to say hi to everyone
Absolute Lymphocytes:
Back from the hematologist, counts slowly rising.
ALC is still going up
