What do you think?

[Carissaleigh]

I am still awaiting final diagnosis of CLL. My grandmother had CLL. I have been very fatigued, weak, shaky at times, chills, night sweats, lesions, confusion, brain fog, depression, anxiety, heaviness of chest, new aches and pains, vision getting worse in small amount of time, headaches, tongue burning, hair loss, bloating, gas, constipation, swollen sore lymph nodes in neck and chest area, inflamation throughout, arms and hands tingling. Sharp pains in the lesions due to white hardened deposits around tender inflamed skin. Dry mouth, left femer bone aching, insomnia after waking up, skin tightness. Red spots on skin, discoloration of skin around lesions, shortness of breath, painful touching of rib cage lower sides. I think that is it. Lol in other words I'm just falling apart.

My blood work came out with the absolute lymphocytes, absolute neutrophils, absolute neutrophils, absolute monocytes, platelet, WBC all increasing almost doubling in 3 months, with a decrease in eosinophils, and red blood count slightly. Mch is at the top of the normal scale.

My question is: can this be anything else, or does it most likely point to CLL? Is there something in my symptoms and blood work that can rule all out? Or does it just validate my concern in having it?

[cajunjeff]

Carissa it sounds like you have a lot of symptoms and evidently have been doing a lot of bloodwork. Cll is a relatively easy illness for a doctor to diagnosis . Has your doctor not made a diagnosis?

It’s usually not a good idea for lay people on forums like this to make any diagnosis. In general, a very high wbc count can be indicative of leukemia. My doctor told me when my wbc came back at 50k it was almost certainly leukemia. A flow cytometry test confirmed that diagnosis for me.

It is odd when you report that your platelets would be increasing or doubling. With Cll they usually go down, not up. With all your symptoms and labs I would hope your doctor would have given you a diagnosis by now.

You do have a lot of symptoms, most of which can be found with Cll. For most people these symptoms come on gradually, not all at once.

The good news is that Cll, while maybe not curable, is very treatable, much,much moreso today than when your grandmother had it. If you have a Cll diagnosis you should see a Cll specialist as soon as possible. Good luck. If your symptoms are Cll related, you might find great relief with treatment. Jeff

[Carissaleigh in reply to cajunjeff]

Thank you for replying. I have more blood work that I am waiting on. Most of the symptoms have started gradually over the last 15 years. The most recent ones is the debilitating fatigue, shortness of breath, non-healing lesions, and weakness.

I think my nurse practitioners want to rule everything else out. When I have suggested she go ahead and test for CLL. These last round of blood work she is testing for a certain kind of protein and more things. I have breast implants and believe in BII, Breast Implant Illness. It is basically your body continuously fighting a foreign object and creates a safety scar tissue capsule around the implant and that is usually full of cytokines and other things that are toxic to your body. If it isn't CLL, I wonder with the unset of the other main symptoms if it could be ALL. Well, I have been to 3 different nurse practitioners in specialties and 1 Dr. She is referring me to a Rheumatologist. All I know is I am so weak and tired and can't work and am going broke while they are taking their time testing for everything but what is suspected especially since it is in my family history. My total WBC was only in the 4,000. But the alarming part is that it doubled in 3 months time from the 2,000. I wish there was some app that you could plug in your CBC results and it list specific diseases or cancers that it could be.

[AussieNeil Partner Administrator in reply to Carissaleigh]

Do you have your figures right for your total WBC? A total count of 2,000 is very low (you would probably be neutropenic and at heightened risk of infection). A count of 4,000 is still low, with the normal range being roughly between 4,500 and 11,000. With counts as low as yours (if you have reported them correctly) doubling time is irrelevant for any of the individual white blood cell types for CLL. With CLL, specialists only check doubling time for the lymphocyte count part of the WBC when the lymphocyte count has climbed above 30,000. That corresponds to a WBC of around 35,000.

Because your grandmother had CLL, you are at a slightly higher risk of developing CLL or another blood cancer, with about 10% of CLL cases being familial. It's a rare cancer, however and your blood test results (if you have reported them correctly), just don't fit. CLL is suspected when there is a raised lymphocyte count (above 5,000), particularly if smudge cells are reported as present. In more advanced stages, platelet and or red blood cell and haemoglobin counts may be below the reference range. The latter can contribute to fatigue/shortness of breath. CLL is diagnosed via a Flow Cytometry blood test. There is a rare form of CLL called SLL (small lymphocytic lymphoma). With SLL, the lymphocyte count can remain in the normal range, but platelet and/or red blood cell and haemoglobin counts may be low, particularly if it is advanced. Diagnosis is by flow cytometry of a lymph node biopsy.

I hope you are able to get a correct diagnosis very soon and that it is easily treatable. The good news is that from what you have shared, I would consider it unlikely you have currently incurable CLL/SLL. If you do end up with a CLL/SLL diagnosis, you've found the right community to support you.

Neil

[Carissaleigh in reply to AussieNeil]

Thanks for responding. I did report it incorrectly. My WBC is 10.2 thousand/ul from 7.1 thousand/ul

My absolute lymphocytes are 4162 cells/ul from 2783 cells/ul.

My RBC went down a little as also my Hematocrir, MCG, MCG, hemoglobin. All other white blood types went up. My platelet count rose from 218 to 325 thousand/ul.

Within 3 months these changes have happened.

[AussieNeil Partner Administrator in reply to Carissaleigh]

You will see 'changes', just due to repeatability and calibration limitations with the testing machines. There are also natural variations depending on so many factors, such as exercise, diet, drugs, time of day, your degree of hydration. IF you are developing CLL, then overall trends are important (and no doubt for other conditions). Don't forget that 5% of the healthy population have results outside reference ranges. Platelet measurements are very hard to measure accurately because they naturally clump together and both your counts are well within the reference range.

Even with a lymphocyte count of 4,162, you don't meet the criteria for CLL, which is over 5,000 B-Lymphocytes all the same clone (plus up to 3,500 other B, T and NK lymphocytes). There is also a basic machine repeatability limitation of +/- 500, which makes quoting 4 digits sound far more definite than is truly the case. Perhaps now you can appreciate why your doctor isn't particularly concerned.

Please note that I am not medically trained.

Neil

[Carissaleigh in reply to AussieNeil]

Thank you I appreciate it. This makes me emotionally feel better. Even if physically I don't. Maybe they will figure it out soon and if it is the beginning stages of CLL at least I would have caught it before stage 3 and 4 which is what I understand when it normally gets diagnosed. All I know is that I'm in pain, I have 0 energy, brain fog, memory loss and shortness of breath. The inflamation throughout has got to go. 😊

[AussieNeil Partner Administrator in reply to Carissaleigh]

Inflammation could well be the cause of your raised lymphocyte count and we have plenty members diagnosed in stages 0 and 1...