WBC count has come down

[Shirumati]

Hello everyone. Firstly I must thank the group because of which I got to know so much about CLL. Now myself and my husband are having peaceful days. In my last post I had said that my was diagnosed with CLL in January 2019. It was a mistake. He was diagnosed in January 2020. He is on W&W. We got his latest report yesterday done after 3 months. His WBC count has come down from 37000 to 35900 in the last 3 months. Also in the last report his haemoglobin and platelet count were bit on lower side. But this time his haemoglobin and platelets are under normal range. And till today he is not having any nodes or anything. But few times I feel his energy levels are not that good compared to days before he was diagnosed. Just want to know your experience about this.

[Jacksc06]

Hi Shirumati. This condition does tend to cause fatigue. Prior to treatment I had good days and bad days, as things progressed I felt that I had very little energy and found it hard to find the motivation to get anything done. Blood counts do tend to fluctuate also. Best wishes.

[Shirumati in reply to Jacksc06]

Thank you

[cajunjeff]

Unless our Cll is very active, we will see only gradual changes in our lab results. Three months in between labs for many versions of slower growing Cll may not show any real changes. He could do labs tomorrow and have them be slightly up or down from the recent labs.

With Cll, over time our wbc will go up and our hemoglobin and platelets will go down. With active disease that can happen over a few months. With more indolent disease, that can happen over ten years or more.

The pace often stays the same, but sometimes Cll quickens the pace for reasons we do not know.

It’s really hard to draw many conclusions at all from testing so close in time. It is certainly good early news to see labs appear to be stable.

[cllady01 Former Volunteer]

Reasons for fatigue can be CLL related or not. Hemaglobin low levels are a possible cause in CLL and the condition would be anemia on reports. (other causes in CLL are not known by Drs. and many are puzzled by the amount of fatigue CLLer's report).

Anemia (can also be caused by low iron/ferritin), low Thryroid levels, or low B12. If your husband's GP/PC monitors those levels on a regular basis (my regular basis is every 6 months because of age) any of the 4 can be ruled out or treated appropriately to correct the problem.

It is early days for your husband's CLL and there will be ups and downs of the blood levels as others have said.

Hoping for a good, long, time of wait and watch for your husband.

[cllady01 Former Volunteer]

Also, walking on a regular basis, even 30 min. a day, can help some to feel relief from fatigue.

[wizzard166]

Hi Shirumati

I am somewhat like your husband, although his is much younger than I am. He is 46 and I am 73. I was diagnosed in April 2018 and my white count hit a high of 45,000 this past January, but now is down to 36,000. It recently was up to 46,000 , after it had dropped to 35,000 a couple of months ago. I go in and out of fatigue from serious to just regular. Regular is taking a nap around 4pm daily for only one hour, and serious is taking three naps a day. They range in number of naps in the same exact cycle with my WBC going up and down like a roller coaster. My lymph nodes go from just a couple popped up on my right side of my neck to three big ones there and three sizable ones on the left side, with on of them a big one over the top of the left clavicle.

What I'm figuring out is that my immune system is pretty low, with the IVG, IVA, etc readings being now below the low end of normal. From this and the roller coaster white count, I'm concluding that my body is fighting bacterial outbreaks from bacteria that normally live within everyone else but never break out in normal people. Each time one of those strains breaks out, sort of like a basketball game where a really fast player steals a ball and goes the length of the court to score, my remaining weak immune system valiantly struggles to fight. To do so it must increase the White Count, to get new White normal cells that fight illness. Those normal white cells always die at a certain time in a normal life span for them, whereas the abnormal white cells we all have with CLL don't die. They are sort of immortal, and also useless in fighting disease. So when my recent successful efforts to beat the fast break of the normally dormant virus are over, those new white cells die and my white count returns down to its current normal level of around 35,000. When sick it pops up to around 45,000. When sick I get much more fatigued and lymph nodes enlarge and pop up. When I win once again the white count goes back to its CLL Normal level, and the lymph nodes decrease, and my fatigue gets better.

I'm not a doctor, but this sure sounds like what your husband is likely going through. If so then just expect to go through cycles like this over the next couple of years.

Carl

[Shirumati in reply to wizzard166]

Thank you so much for sharing your experience.