CLL Diagnosed less than a year ago. 13 Q del. I am/was hoping for a slow progression of this disease, but my recent blood work is worrying me. I'll meet with my doctor (CLL specialist at U of Chicago) next week, but I value the insight of those who have been dealing with this just as much if not more.
Here's what I've got:
'
ABS Lymphocytes have increased since June from 9.57 to 16.21 That's my main gasp.
Lymphocytes as a percentage have increased from 77% to 82%
WBC went from 12.4 to 19.8
Monocytes tanked from 6% yo 3%
Though somehow ABS Monocytes are still in normal range at 0.59
I asked for an iron panel and ferritin as well as a B12 screen--those all look normal. Vit D is at 30
My concern is with the lymphocytes, WBC, and Monocytes at this moment. Any insight appreciated.
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Horsechestnut
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If you are concerned you could do blood tests a little more frequently. You may discover that it lowers or begins to plateau. In general it isn’t really that high of a number yet but that depends how bulky your disease is.
The CLL in my blood actually never got that high but my lymph nodes ballooned and I could barely chew food.
I wouldn’t focus hugely on the white count. If your platelets, neutrophils and hemoglobin are normal watchful waiting will probably be in order.
I suggest you ignore WBC and any of the % figures on your WBC components. They may be alarming for you today, but not out of the ordinary for a CLL patient.
There are 5 components of a WBC, but the only you should watch are the two biggest -
ABS Neutrophil count - aka Neut# or ANC- that number will bounce around, especially if you get an infection, allergy or vaccination. If it goes up & down, you can mostly ignore it, but when it goes down below 1.0 then it might be time to discuss treatment options.
ABS Lymphocytes, Lymphocyte count - aka Lymph# or ALC, that number will likely rise over time, but may be a bit erratic, so your recent change from 9.57 to 16.21 may not be a real trend if the next future result is between those two. There is NO ABS Lymph number that requires treatment. Most of us were 10x to 20x your current number before we started treatment.
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You may want to review this pinned post to help you understand what your doctor will use to decide when to recommend starting treatment. (IMO- you have a long way to go- and I predict your CLL specialist at U of Chicago will say the same).
Thank you. Len. Neutrophils are low, but ABS Neutrophils are okay. I'm learning, and the curve is steep--and the landscape inconstant. I appreciate the help.
Please please ignore Neut%, it will be wrong due to the way math works, the % will get smaller and smaller as the Lymphs increase. So ignore %. Your Neuts are OK as long as the ABS Neuts are in normal range.
About the only thing that would concern me is the Vitamin D level - 30 is borderline, and we're heading into winter, where sunlight based vitamin D stops. So, I would ask about taking a Vitamin D supplement, possibly combined with K2, at least for the winter months.
As for the lymphocytes, you show growth, but docs don't even start to care (unless you have worrying symptoms like rapidly enlarging lymph nodes or spleen) until you get above 30K ALC. Right now, all the current growth MAY show is that you won't be in the "never gonna be treated" category, but you could have many, many years of W&W still to come.
Edit to Add:
From NIH for Vitamin D:
"Levels of 50 nmol/L (20 ng/mL) or above are adequate for most people for bone and overall health.
Levels below 30 nmol/L (12 ng/mL) are too low and might weaken your bones and affect your health.
Levels above 125 nmol/L (50 ng/mL) are too high and might cause health problems."
I assumed you posted in nmol/L, but I would check with the doc regardless.
I've got a good plant sourced Vit D tablet and a chewable K2 as well as a chewable Magnesium at the ready. I had a feeling my levels would be scant. D has been as low as 12 in the past, so this is good for me but not great. Once I clear the supplementation with the doctor, I'm taking them.
I thought I saw a mention of Canada somewhere in your previous postings. If so then the difference 30 nmol/L (12 ng/mL) is important. So you need to clarify the units on your D3. is it nano mols or nano grams?
I'm outside of Chicago and eeking out the last potential sunshine. That said, my dermatologist now wants me consistently slathered in sunblock every single day--so that will cut in on my sun receiving if I follow that advice as well.
My ALC always increased at that or a higher level over a 3 month period and it took me 7 yrs to progress to treatment. It’s really not that substantial and may wax and wane along the way. The longer term trends are more important along with the general picture and your overall health.
I can’t see any need for alarm but can remember feeling very spooked in the early stages when these increases occurred. It’s understandable but honestly not necessary to think this is a bad outcome. An infection could push your WBC up more overnight!
You’re still on the CLL ‘nursery slopes’ and seem to be doing ok overall.
Hi there! I'm 13q, w &w too. Watching and waiting for 5 years. As these good folks have been saying, an increase in the lymphocyte count is pretty common, and doesn't necessarily mean you're any closer to treatment. Mine recently doubled to 40, but my specialist told me even that doesn't necessarily indicate the disease is taking an aggressive course. Yes, we're told doubling in 6 months or less indicates treatment. Actually, it's one of the indicators, but associated with symptoms - large swellings, night sweats, overgrown spleen, fatigue, anemia, etc. As long as you don't have these, you're OK. We all know what's happenin in your head. We've all been there. Watching and waiting is tough mentally. We focus on the positive. No symptoms, no treatment. And you and I may never need treatment. One day at a time! Let us know your progress. Peace!
I dont think you have to worry, your numbers look great to me. My WBC is 145, Lymphocytes 140, they have been going up, and sometimes down since I was diagnosed. I still have no symptoms and have had no treatment. I live in Canada, so have had no testing other than a Flow Cytometry in June, that confirmed CLL. I'm now 15 years W&W, and 75.
Your numbers are so low as to be relatively meaningless at this point. This is a very long and broken road we are on, and you are only in the very beginning of the journey. First of all 9 is the top number of normal and 16 isn't that high. In January 2016 I had Pneumonia and my WBC during the hospital stay was around 18,000. I had a reason to wonder if I had CLL, because my WBC before the Pneumonia was around 11,000, so I on my own set an appointment with a CLL Specialist at a local Cancer Center in Florida. She wondered why I came to see her, but was willing to run a type of test that shows the number of Monoclonal B White Cells, and that is the key to diagnosing CLL. My Monoclonal B Cells were around 4200, and the borderline to diagnose CLL is 5000 Monoclonal B Cells, so she said I was not yet CLL. I explained that My Father had CLL, his Mother had it, and her Father too. So she agreed to start following me back then, even though I was not yet CLL.
After recovery from the Pneumonia my WBC settled in at around 13,000. WBC goes up and down depending on whether you are fighting an illness or have inflammation. Over the next two years. Finally in bloodwork with her in March 2018, including Flow Cytometry, she declared me to have CLL.
Over the next five years my WBC has steadily increased, but it goes up and down based on fighting illness. My RBC steadily has gone down, as has the Platelets. In my 6 Month visit with my Specialist in Boston (I still live in Florida but I chose to have a top CLL Specialist in Boston follow me), my WBC was up to just below 100,000. My RBC and Hemoglobin are lower but still within a range that would keep me in Watch and Wait. The Platelets likewise are down more but also in a range that wouldn't dictate treatment. My Boston Specialist however finally uttered those words I hoped never to hear: " It's not too early to start Treatment. You also should start IVIG therapy even before starting the Pill (Zanubrutinib). The reason for deciding to end Watch and Wait was not because of the usual criteria of too low Hemoglobin and RBC and too Low Platelets. In my case my Spleen has grown to over 20cm with abdominal pain, and the growth in number and large sizes of Lymph nodes in the Chest, Abdomen, and Pelvis are concerning too.
I've been getting sick more than normal every year since diagnosis, and had trouble always getting better quickly, but this year I was worse. January saw a six week upper respiratory infection. May saw an eight week upper respiratory infection, and then I got sick during the visit to Boston on September 11 and 12. I was still sick on Monday October 2 when I finally gave in and had my first IVIG four hour infusion. What a miracle with the IVIG. I overnight that Monday beat the infection completely. My wife was shocked on Tuesday Morning and said "its a miracle. you didn't cough once all night and your breathing was so much better." Why did I wait so long to start IVIG? I psychologically didn't want to accept that I was now dependent on something other than myself to beat infections. Thank God I gave in. Now I have a chance to live longer. I'm going to wait until February 1 to start the Zanubrutinib, and I'll hope for the best with side effects and also with how well it works, but I'm now more optimistic.
My point to you Horsechestnut is not to lecture at all. My point is you have now joined us on what is usually a very long and very hopeful road. You just took your first step down that road, and honestly it isn't that bad a trip. I've basically enjoyed life a lot these last fife and a half years since diagnosis. Multiple International trips, many trips within the States, movies, concerts, and a lot of this through Covid. It hasn't been bad at all. Yes I was getting really tired and worn out in the last couple of years, but frankly if I had started IVIG I now think I wouldn't have suffered much that way either. Relax, you'll be fine.
I truly thank you for that. Travel is on my mind--a return to North Wales in particular, and I think this condition sparks a fear in me of becoming homebound and too weak to enjoy much. I need to cultivate a better attitude and I'm starting today. And will have to work on it every day because it doesn't come easy!
Just met with the doc on Zoom. He was reassuring and said my numbers worry him not at all. He will see me in six months. He said it's a crazy-making disease and overthinking and worrying are part of the experience but it's best realize that and know it for what it is.
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