Help me to understand please.

[Typhoon770]

Hi guys, I am fairly recently diagnosed with CLL (April 22). I’ve just had my second appointment with my consultant. He told me that my WBC count had risen from 24.3 to 30.6 since April. On a scale of 1 to 10 how bad is this? I display no symptoms atm. What number do my WBC have to get to before intervention? Am I likely to become unwell if they continue to rise? I’m confused and worried. I don’t understand the terms that the consultant uses. How bad can things get guys? Thank you all, your advice is greatly appreciated.

[AussieNeil Partner Administrator]

On a scale of 1 to 10 it's zero. More specifically, you haven't provided enough information to provide an assessment. Reading this pinned post will help you appreciate that you need to track your absolute lymphocyte count (ALC), not your WBC and that trends are important. healthunlocked.com/cllsuppo...

Further, lymphocyte counts bounce around so much when they are under 30, CLL specialists don't really begin to take notice of how much the ALC is changing until it climbs over 30. Then they check if the doubling time is under 6 months. There is no upper limit that triggers the need for intervention, as I've explained in this post. healthunlocked.com/cllsuppo...

We have members in our community with ALC numbers over 500.

The more important blood count numbers to watch are your haemoglobin (under 100 is a trigger for starting treatment) and your platelet count. Again under 100 is a trigger for starting treatment, or even lower, if it is considered stable, i.e. very slowly changing.

This pinned post covers the reasons for starting treatment: healthunlocked.com/cllsuppo...

Neil

[Typhoon770 in reply to AussieNeil]

Hi Neil, thank you for your reply to my post. I have spoken to my GP today and they have given me the following results from my blood test on the 18 July. Lymphocyte 39.22

Haemoglobin 139

White Cell 46

Platelet 162

I think from having read many articles the results aren’t bad but as I’m newly diagnosed I expect things will change. Many thanks Michael

[AussieNeil Partner Administrator in reply to Typhoon770]

Hi Michael,

Your blood counts are fine, As time goes by and you have more done, you'll be able to determine if there are any trends apparent. If your lymphocyte count continues to ride quickly, then your specialist will check if lymphocyte doubling time is under 6 months, as that indicates an active CLL than needs closer monitoring.

Neil

[Richard_TX]

I was diagnosed 6 years ago at age 57. My WBC count was 13.6 now it's 90. Everybody's situation is different but my WBC count was at 31 three years ago. I'm feeling fine and have no symptoms. Every year there are more new dugs for CLL many with great success so check this forum for information. There are a lot of smart people here with good information. And don't feel bad about not understanding, I can't count how many appointments I've had with my Dr's and I still don't understand all this. Hang in there you're going to be all right.

[CycleWonder]

It’s a shock to be diagnosed with CLL and scary at first. After awhile, it’s not the main thing in your mind - you might think about it briefly each day.

There are some steps to take now - get your vaccinations if you haven’t had them yet (shingles if you had the chicken pox, flu, pneumonia, tetanus, Covid). Your immune system will likely be functioning better now than in the future.

There are many new treatments that are more effective and have fewer side effects.

One wrinkle in having CLL is being wary of getting Covid. Treatments are better now than they were in the early times but it is still not fun.

[Fran57]

Hello and welcome.There are some very knowledgeable and welcoming people here…. you are bound to feel shocked, worried and confused at first, but please keep looking here and asking questions.

My husband was diagnosed with CLL, getting on for 10 years ago, and while he has needed treatment, the treatment is there and it works well. I found(and still find) the information here much more complete and understandable than that from the consultant (who has been very good) because the doctors don’t always have the time and don’t always appreciate that you will have more questions after your appointment.

You will gradually learn the terminology and recommended ways to go forward and you will get on with your life (Covid permitting!🤦‍♀️)

I wish you well.

Stay safe,

Fran 😷

[Upthenorth]

Seven(?) years in, I think of CLL as my unfortunate condition, and then I stop thinking about it.

Take care of yourself by doing the things you would do to be healthy: eat right (mostly); get regular and meaningful exercise; keep up to date with routine preventatives; pay attention to your body—as you would if you didn’t have CLL.

You and your doctor will navigate numbers and conditions and treatments.

And keep your eye on this site, because you can get answers from multiple perspectives—very important for a condition that manifests itself in so many ways. Mostly, you are not just CLL, CLL is one of a host of your factors. (I like to focus on the “chronic” part, because it’s so superior to “acute.”) And, you aren’t alone.

Welcome.

[lexie]

"bob like a cork" - perfect visual for what these numbers do! I'm using that.

[lexie]

Agree with Neil that you don't have enough numbers for a trend yet. Mine vary 7 years since diagnosis, but stay under 30, even dropped down to 11. Yours is not much of a jump.

[SofiaDeo]

I'm sad that only "guys" were asked to comment. I dislike it when people ignore/exclude women from conversations.

[Newdawn Administrator in reply to SofiaDeo]

I don’t think gender exclusion was intended in any way Sofia but I know from previous occasions that this expression ‘guys’ rankles with you. I tend to see it as a gender neutral expression now, a collective colloquialism. I’m sure some will disagree.

Maybe ‘folks’ is safer but I’d hope we could assume automatic mutual respect on this site as a given regardless of slip ups in political correctiveness.

Newdawn

[Teddo in reply to Newdawn]

" Guys" is totally gender neutral in my part of the U.S.,

[Jetliz in reply to SofiaDeo]

I've just Googled the term Guys in the plural and it says

Used in speech and informal writing to refer to or address two or more people

[AussieNeil Partner Administrator in reply to Jetliz]

That's how it's used in Australia as a collective noun for all present - there's no exclusion implied. Historically it used to mean men as in 'guys and gals'. Gals can be seen as a derogatory term when used on its own.

The meaning of words can change over time and indeed can vary by or within a country. I find it's best to assume no offense (or in this case exclusion) is intended unless the accompanying text implies otherwise.

Neil

[mrsjsmith in reply to AussieNeil]

Neil agreed,

In Ireland it’s common to describe a group, regardless of sex, as Lads !

[lexie in reply to Jetliz]

Many would have a tough time in my area distinguishing the terms. "You guys" - my friends, male or female that I enjoy the company of, collective affection. "That guy"- a jerk, male. "This guy" - also male that needs pointing out, good or bad. "These guys"- depends on situation, male or female, but understood in the moment.

[Typhoon770 in reply to SofiaDeo]

Hi, I don’t know where you are from but here in the Uk the term Guys is generally used to address a collective of people be they male or female. It certainly wasn’t intended to offend anyone nor did gender exclusion even enter my head.

[81ue]

Hi and welcome! Also thank you to AussieNeil for posting the helpful links as a reminder to us all on what numbers are important.

[Big_Dee]

Hello Typhoon770

Let me start by saying I really envy your WBC. As AussieNeil has explained the trend in ALC is important. Most doctors investigations start with your white blood cell count to determine why your WBC is higher than normal. In this process one of the reasons maybe you have CLL. This will be confirmed by addition blood testing to determine for sure that you have CLL. The WBC is the easiest to track trends as ranges from 10.5K per litter and up to a million K are possible, although most doctors start being concerned above 200k WBC but there are a lot of other things more important than WBC, like neutrophils, red blood cell count and platelets, but harder to rapidly see tread changes. Keep in mind that I know of a man that has had CLL since 1985 without any required treatment. Blessings.