High WBC levels

(This is my second attempt to post this - I think the first one went astray). I am nearly 68 and was diagnosed with CLL after a random blood test in April 2014. I consider myself fit and healthy so was surprised to be told that I had the highest WBC count my surgery had ever seen. I have other mild symptoms (lymph nodes in armpits and neck, enlarged spleen and slightly anaemic), but after the initial concern, things have remained stable, with WBC levels varying from 260 to 316, no infections or other obvious symptoms developing and so my W & W time has been extended to 3 months. I haven't had time to look at all the other blogs yet (I have only just discovered this website), but am wondering whether anyone else has had experience of high WBC levels.

[AussieNeil Administrator]

Hi Maggie_B,

Welcome to our community, though I'm sorry that you had to get into your surgery's record books 9 months ago and not find us until today. You must have found your diagnosis with such a high WBC count rather scary, though I'm very pleased to hear that your symptoms are mild and your CLL has remained stable. Long may that continue.

Your first submission didn't go astray, but I've repeated it here so that your story is in one place.

"Hi. I have only just found this website, though was diagnosed with CLL after a random blood test last April. I feel quite fit and healthy so it was a surprise to be told by my doctor that I had the highest WBC count the surgery had ever seen - 314. Subsequent tests found that my spleen was slightly enlarged and I had enlarged lymph nodes in the neck and armpits. Slightly anaemic, but platelets ok. They decided to put me on W & W, and since then there has been little change, no infections etc. and they now consider me stable, for the time being and don't have to go back for 3 months. I am coming up to my 68th birthday. I haven't had time to read through all the blog entries but was just wondering whether anyone else had any experience of a high WBC count."

I hope you find this pinned post "How high can you go and what does it matter" reassuring:

healthunlocked.com/cllsuppo...

I have heard of others with CLL with higher counts. Hopefully we'll hear from them here which will reassure those with lower but growing counts that this symptom is just one aspect of living with CLL and that a high count is not a reason for starting treatment in the absence of other symptoms.

Neil

[Janetfld]

Maggie,

My WBC reached 286 and I was like you. No visible symptoms and thought I felt ok. It is my understanding that the higher your numbers get before treatment, you run the risk of getting tumor lysis syndrom when treatment does begin. Please read up about this. I would also print out several articles concerning TLS and take them with me to the next doctor appointment. I ended up with this and would hate to see anyone else suffer like I did because I was not knowledgeable at the time. Be very hands on and remember knowledge is power.

[Hidden in reply to Janetfld]

Thanks - will do. I hadn't heard of TLS before.

[Graham2222]

Hi Maggie

My Lymphocyte count got to 252 and my WBC was high too. My understanding is that the doubling time is more important than the absolute number at any given time. My ALC had gone from 12 to 252 in less than 9 months, so this was seen as a trigger for treatment. But I spoke to other patients with high counts, that were holding steady at a high level and with few other symptoms, who were not being put forward for treatment. Good luck. Explore the site - it's very helpful.

[Hidden in reply to Graham2222]

Thanks - this is encouraging.

[Newdawn Administrator]

Maggie, welcome and hello to you!

You've already received some excellent advice and links and I'd like to add this really useful link to it because I find it very helpful (as are all Dr. Sharman's blogs). Hope it helps.

cll-nhl.com/2012/12/when-to...

Newdawn

[Hidden in reply to Newdawn]

Thanks for the link - I have had a quick look and it does look very useful.

[splashsplash]

My suggestion would be to seek out a CLL specialist consultant even if you don't need treatment yet, average docs really don't know much about the way CLL behaves.

[Hidden in reply to splashsplash]

Thanks - will look into it.

[PaulaS Volunteer]

Hi Maggie,

Others have already welcomed you, but here's another welcome from me. I'm glad you found us.

You ask if people here have experience of high WBC levels... Last October mine was 260.6 My ALC (Absolute lymphocyte count) was 250. I often wonder how I can go around with over 50 times as many white cells in my blood as is "normal" , and still function, but people do. I think the cells are very small...

As Graham has said, the important thing isn't so much the numbers of white cells in themselves, it's the rate of increase in those numbers. If someone's ALC doubles in less than 6 months, it's usually seen as a sign of probably needing treatment. But it sounds like your count is reasonably stable. When you say it varies from 260 to 316, I'm assuring you mean it goes up and down between those 2 levels?

It's good that you don't have many other symptoms. You say your spleen is enlarged, but it sounds like it isn't causing you any problems, which is a relief. I don't have many other symptoms either (except tiredness), but my spleen has become the problem that is pushing me into probably needing treatment soon. It is so enlarged that it's squashing my stomach, and I can't eat normal-sized meals - have to eat little and often. I eat lots of chocolate ice creams these days which I never allowed myself to do before, because of a tendency to put on weight . I never thought there'd be a time - especially at the age of 66, when I'd be trying to put ON weight, but that's how it is now.

Anyway, that's my experience of having a high WBC (and ALC) at the moment.

I'll be very interested to hear how you get on.

Wishing you all the best,

Paula

P.S. Although my WBC was 260.6 last October, just a month later, it had come down to 227. The workings of CLL are very hard to predict...

[Hidden in reply to PaulaS]

Thanks Paula - another encouraging story. To clarify, my WBC was 326 in May, when I was first diagnosed, but had gone down to 250 within a month. Subsequent readings were around 300 - 320, but had come down to 250 in December. My consultant is not placing too much weight on the levels or the variations now. My haemoglobin levels are a bit low - usually about 104, but platelets so far have been normal (currently 165). Strangely, I seem to be gaining weight slightly, although I am eating and exercising pretty much the same, but that is preferable to losing weight I guess! What interests me is that the only previous blood tests I had date back to 2006, when the levels were normal. To get to 326 in 8 years means that my levels must have doubled in a short period at some point - probably several times, but because I wasn't being screened, it was missed and now the levels have leveled.

[PaulaS Volunteer in reply to Hidden]

Hi Maggie,

Good to hear you're able to eat and exercise as normal... and not losing weight. You also said you're not getting infections, platelets are OK, and you haven't mentioned any night sweats (so I guess you're not getting those either). All of which is very good news... I can see why your doctor thinks you're OK to continue with the high WBC levels without needing treatment yet. Your haemoglobin is certainly a bit low though - I hope that doesn't drop any more.

I've been trying to do the maths on your blood tests that you say were OK in 2006, but are now 326... You're quoting WBC and it would be more accurate to use figures for ALC (similar to WBC but less because it leaves out the neutrophils). However, if your counts doubled every year, it's surprising how it adds up, over 8 years.. it got me thinking... An initial count of 5 would become 320 after 6 or 7 years... (If I've done the maths right).

But that's all rather a theoretical exercise and CLL doesn't usually progress in quite such a regular and predictable way... The important thing is that your counts seem to be stable at the moment, however they got there... Which is a relief.

Do keep us in touch, as to how things go in future .

wishing you well,

Paula

[Hidden in reply to PaulaS]

Thanks again Paula,

I must ask for my ALC records - hadn't heard of them before. Yes, I am aware the haemoglobin is a bit low, which may reflect the fact that I haven't eaten meat for the last 40 years. My consultant didn't think it was necessary for me to have iron supplements, so I am trying to get as much iron into my diet from natural sources as possible, though I doubt whether this has much impact.

Hope all is going well for you,

Regards,

Maggie

[PaulaS Volunteer in reply to Hidden]

Hi Maggie,

The question of whether we can increase our Hb (haemoglobin) with diet and supplements, is an interesting one. My Hb is also low (not as low as yours, but heading that way). So it's making me think about these things...

I suppose it depends on the reason for our low Hb. If our bone marrow is so crowded with CLL cells that there's no space for the red cells to be produced, then supplements probably won't make any difference. But if we haven't got enough iron in our diet, or are not absorbing it properly, then maybe the supplements would help.

I'm not eating well these days, because of a very enlarged spleen, so I might not be getting enough iron. Your meat free diet might also make it harder to be getting enough iron.

I think I remember someone saying that their CLL specialist had said iron supplements wouldn't help them, but their cardiac doctor said they would. And they took the supplements and their Hb improved a lot. But I can't find the reference to that, and I'm not sure of the details.

It would be interesting to hear other people's ideas on this...

Regards,

Paula

P.S. I'm well, thank you. But I'll probably need treatment in the near future, because of the problems with swollen spleen causing weight loss. Having said that, it felt much less swollen over Christmas, which was great. I was able to eat almost half as much as everyone else - a great improvement.

[enelson3]

HI everyone I'm new here but i have had cll since sept 2012. When i found my cll my count was 78k. As of yesterday my current count is 657k ,yes you read that correctly! 657k. I start my clinical trial (FCR with ibrutinib) in a couple of weeks. I'm a bit tired but still have very little Lymphadenopathy. I was curious Janetfld did you get meds to help with TLS?

[AussieNeil Administrator in reply to enelson3]

I think you have the dubious honour of holding the highest white cell count of all 1,800+ members on this community! I'm wondering how much higher it may go on your trial - will the Ibrutinib boost it as it usually does when used as a monotherapy or will the FCR bring it down? Whichever wins, with that combination treatment, you should be the true winner and I wish you well. I'm sure we'd all be interested in hearing how you go on the trial too. Do ask your medical team how they will be monitoring you for tumour lysis syndrome. Given you have little lymphadenopathy, that might not be an issue, but I think asking the question may provide you with reassurance that they have that potential risk covered as well as bringing it to their attention.

All the best,

Neil

[enelson3 in reply to AussieNeil]

I will keep everyone posted on high I go. I guess I'm competitive but maybe I should have tried for a different honor

[enelson3 in reply to enelson3]

Allopurinol is one drug they give to help combat it. Also I will start the ibrutinib a week before the fcr

[PaulaS Volunteer in reply to enelson3]

657,000! Wow! I'm sure Neil is right, that you have the dubious honour of having the highest count on this site! I thought I was nearly winning that competition with my 269,000 (That's my total white cell count, the absolute Lymphocytes are 261,000 - if the counting machines are to be trusted - but they are notoriously inaccurate with such big numbers)

Anyway, welcome to the site, eNelson3. Do keep in touch, it will be very interesting to hear how you get on. I haven't heard of anyone else having a trial of Ibrutinib followed by FCR.

Wishing you well,

Paula