WBC doubles

[Die-Hard]

My numbers have double, WBC up to 110,000, all the other numbers our normal. Doc wants to see me again in 4 weeks, I feel great with no symptoms, don't really feel the need for treatment, need some advice.

[GMa27]

Hopefully just a one time occurence. I felt great but when treatment time came my tests showed it was time. 💕

[Hidden]

actually what is the breakdown of your wbc?

[AussieNeil Administrator]

CLL specialists say that they treat the patient, not the numbers. You haven't shared over what time your WBC has doubled, though I notice you mentioned it was 90,000 a month ago.

With CLL, it is important to monitor just the lymphocyte count, as that includes the CLL cells in our blood. Infections and allergies can boost other white blood cells in our WBC. Specialists do take an interest in lymphocyte doubling time, particularly after our lymphocyte count exceeds 30,000. A doubling time of under 6 months is one trigger for starting treatment, but a good specialist - as you seem to have, just monitors us more closely, looking for other symptoms that our CLL tempo is accelerating before recommending initiating treatment. It may be that your lymphocyte count (most likely the cause of your high WBC) could stabilise. It does happen. We have members with lymphocyte counts 4 to 5 times higher than yours that are still in watch and wait. The record highest lymphocyte count I know of is about 15 times your count. Thankfully CLL cells are small, just a tiny bit bigger than red blood cells. A healthy person has about 1,000 red blood cells for every white blood cell, so we have plenty of leeway before high lymphocyte counts can become a concern, circulation wise.

Keep us informed of how your next consult goes.

Neil

[Mystic75 in reply to AussieNeil]

As always, thank you for the additional detail. I'm always learning from you, Neil!

[Justasheet1]

DH,

My CLL behaved similarly but I must stress that we are all different. If you currently see a specialist, I would have wanted at least monthly labs to keep an eye on things.

I see Dr Wierda at MDA and also see a local hematologist. They watched me together and when my WBC hit 270,000 without other symptoms, they both had enough. Maybe there was more than that but I felt good and were only having occasional night sweats and fatigue.

I would expect to begin treatment sometime after your next appointment. Begin deciding if a clinical trial is what you want or the standard of care is.

The labs could plateau but mine never did. I’m now on ibrutinib after receiving obinituzimab. My labs are normal again and I feel great. The obini brought my WBC down from 272K to 6 in one week.

Good health to you.

Jeff

[Cassie2019]

Glad you may not notice any problem, but I was told a person could have a stroke if white cells get to high, mine are 52,000 and have had lots of problems even before I was told I had CLL. I was told by oncologist that I probably had it when I was having back problems in 2009. I continue to have other noticeable problems, and now being seen by a Lympdemia Clinic for red swollen skin in legs, and other parts of body.

[Jm954 Administrator in reply to Cassie2019]

Cassie,

it is highly unlikely that you would have a stroke because of the number of CLL cells in your blood. It is possible with other types of leukaemia but CLL cells are so small that they do not cause a problem even when the count is well over 700,000. The stroke in other types of leukaemia is caused by leukostasis.

Jackie

[Newdawn Administrator in reply to Cassie2019]

Perhaps the person who told you this was referring to a high WBC after an acute ischemic stroke being a bad indicator rather than being the cause of a stroke.

As Jackie has said, I’ve never heard any evidence or even anecdotal stories of such a link. Where did you hear this scary and probably highly inaccurate information Cassie?

Many of us on here have had WBC’s in the 200 & 300 (200,000/300,000) range without serious concern.

Newdawn

[AussieNeil Administrator in reply to Cassie2019]

Cassie, Jackie and Newdawn are quite correct, as this excerpt from the end of section 4.1 of the International Working group's iWCLL document on diagnosis, management and treatment of those with CLL states -

"Also, patients with CLL may present with a markedly elevated leukocyte count; however, leukostasis rarely occurs in patients with CLL. Therefore, the absolute lymphocyte count should not be used as the sole indicator for treatment."

I've covered this previously in these two posts:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

The stroke risk can be an issue with other leukaemias, where the leukaemia cells are significantly bigger. CLL cells are similar in size to red blood cells and in a healthy person, there are about 1,000 red blood cells for every lymphocyte cell.

Neil

[81ue]

Keep mindful for symptoms such as night sweats, swelling spleen, fatigue more than usual based on your activity levels. What others advise on looking at blood numbers is important. Also look for Beta-2 (increased production or destruction of white blood cells), and LDH (tissue damage) numbers and whether you are in normal range or not, and if not, ask the doctor about it and why there is no concern in your case.

[HopeME]

Die-Hard

I also felt fine before treatment but I was anything but fine. It was discovered that my bone barrow was 92 percent infiltrated with cancer. Once treatment started I got extremely ill. I don’t mean to scare you but waiting too long isn’t necessarily the best approach because all treatments hit you hard. So you want to be reasonably strong when undergoing treatment. Trust your CLL Specialist to tell you when to start. I was surprised how good I felt before treatment and how weak I got while getting treatment. Good Luck!

[LovecuresCLL]

What mutation do you have? I have 11q ATM. I ask because that is the way pathologists risk stratify CLL patients and thus advise oncologists. If you are high risk, they are more apt to treat you. I was intermediate risk until my beta-2 microglobulin level went up which pushed me into high risk. By then I had symptoms (skin infections and severe fatigue) and they began treating me.