Huge change in doubling time of WBC

[moti99]

I'm new here. I'm 70 years old, been diagnosed with cll on 8/2014, with wbc=14. I've been on watchful waiting since then. On 4/2016 I had wbc=22.

Since then (5 measurements) my wbc increased steadily to 57.

I feel pretty good, apart from RA diagnosed on 4/2016, and treated with mtx+prednison. My nodes increased a little.

Does the sudden huge change in the doubling time, mean that my cll became aggressive? can the doubling time return to its older value? might it be connected with RA?

Thanks!

[AussieNeil Partner Administrator]

Hi Moti99,

Welcome to our community - particularly at a time when you are facing uncertainty regarding your CLL. I've updated your title and made your post visible to this community only.

With regard to your question, firstly, doubling time is only monitored once the Absolute Lymphocyte exceeds 30 (not the larger WBC count). That said, it is probable that your doubling time is around 6 months from the information you've provided. However, I'd say that you've identified why this has happened - it's most likely due to the prednisone you are taking to help control your Rheumatoid Arthritis (RA), per this 1961 abstract: bloodjournal.org/content/17...

Given you feel pretty good and your ALC is only doubling around every 6 months, a CLL specialist following the iWCLL guidelines on when to start treatment, would not treat you unless you also exhibited other symptoms requiring treatment and I think would most likely monitor you closely to see if your lymphocyte increase slowed - even before considering the likely effect of your prednisone prescription. I'm not medically trained and you should see a CLL specialist to confirm that your CLL is not becoming aggressive. You also may be pleased to know that there are a few drugs that are used to treat both CLL and RA, so it is worth getting your RA and CLL specialists talking - you may be changed to a treatment protocol that can help both of your health conditions.

Let us know how you go.

Neil

[moti99 in reply to AussieNeil]

Thanks!!! I really hope that prednisone is the reason.

However, my CLL specialist (who I'll meet in 3 weeks), was on phone with my RA specialist. I finished taking prednisone a week ago (my RA symptoms almost disappeared) - so I'll be waiting anxiously for my blood test in 3 weeks.

Have you heard about cases were the doubling time fluctuates without medicine effects?

moti99

[AussieNeil Partner Administrator in reply to moti99]

I hope some other members who check their doubling time reply to you, confirming that it is normal to see a fluctuation in doubling time. I started out with SLL, which progressed to CLL and consequently my ALC has remained low - it's typically been between 8 and 20 recently. I have calculated my doubling time (even though it is not relevant under 30) and it typically varies from between 2 years and 7 years - and that's when measuring the doubling time for the entire period that I've had CLL. I expect the variations will reduce when my ALC is consistently over 30.

I hope that reassures you,

Neil

[freddog]

I took prednisone for a minor skin rash at one point and my count took a sudden sharp incline and never returned to the pre-prednisone levels. That was several years ago, and I've avoided steroids ever since. But still, until very recently I had no active treatment (15 years from diagnosis and with a count of 405K). So you may be watching and waiting for some time. Best of luck.

[MonD]

Hi Freddog. You said your wbc is 405k? I was diagnosed with cll a year ago with wbc of 130. Has varied from 112 to 144 over the year. I have been wondering if anyone else with very high Wbc has never needed treatment. My B2m is also quite high but so far feeling pretty good and on w&w. DI you mind my asking what treatment you are on and what factors led to this? Thanks!!!

[Hidden in reply to MonD]

Hi Mond,

I guess I am experiencing a similar situation without the RA and predisone. DX Jan. 2016 with ALC of 21. Has moved up over the time to 43 and stayed at that for the past month. will see an ENT this week over lingering discomfort in the ears like when in a plane landing.

Just hope the ALC remains or drops by months end.

Regards

Joffre in Auss

[MyCLLJourney in reply to MonD]

I had treatment in 2021, but it is because I got flu-related meningo-encephalitis where my white blood cells entered the blood-brain barrier. It is extremely rare. Since my wbc was also 173k, they treated it and it helped the encephalitis too. My igg keeps going low too, although it has improved. I'm waiting for insurance authorization for another IVHG infusion (called gamma-globulin). My previous one was in January. Still recovering from encephalitis, with dizziness, nausea, problems with balance, and head tremors. Hopefully, these symptoms will go away.