[I'm cross posting this from the American Support site.]
I was diagnosed with CLL in 2011. Recently I have had a dramatic increase in my white cell count, more than doubling within the past year to my current level of 106.5k and my oncologist wants to discuss treatment options.
The odd thing is that I have no symptoms that are commonly associated with CLL. I have no swelling of the lymph nodes, no night sweats, no weight loss, and its highly unusual for me to get sick.
Is this unusual? Should treatment be pursued even though no physical symptoms are evident?
Written by
lednar
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The iwCLL formal guidelines for starting treatment say;
‘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.’
Also doubling of the lymphocyte count (ALC) should be over a 6 month period not a year.
Much depends on the patient’s general health, any constitutional symptoms and whether the markers are aggressive enough to raise additional concerns. You sound to be in good shape regardless of the high lymphocyte count.
The lymphocyte alone in this case wouldn’t normally be reason enough to start treatment but may prompt your doctor to keep a closer frequency of monitoring.
You might think of this as anticipating that you will need treatment sometime soon. By discussing the treatment options, possibly consulting a 2nd opinion and having the decisions in place. then you and your doctor can decide later, when to implement them, especially if your bone marrow suddenly starts to suffer.
If a specific time of the year, or when you can get some escort assistance, is better for you to be in the outpatient infusion clinics and/or get multiple blood test draws in a 24 hr. period, then you can choose when to start.
Please remember that the doctor wanted to start the discussion. You should consider all the options and then make a joint decision. And delay is one possible decision.
Ok, well if you have those tests done it may provide a better picture as to when you would/or need to start treatment. I started taking a BTK drug this past month after high WBC (around 200k) and swollen nodes, but was still feeling fine. Some of the testing revealed I had a more aggressive disease profile, which sounds scary, but it really just helps the doctors prescribe the best course of action/which drugs to take on what time frame etc. Anyway talk with a CLL specialist, as others have noted a high WBC in isolation is not cause for starting treatment.
Is this a one-off blood count? Whites can go up for all sorts of non-CLL reasons - eg fighting off an infection. (and sometimes I hardly know I have an infection, but whites doing their job (so increased))
I just started treatment in August, my WBC was 221k but it had been higher. I also had swollen Lymph glands pressing on my bladder. That was going to create problems. I believe the more important number is your hemoglobin. When it get down near 10 that is more indicative of needing treatment. I am back up to 11.4 and my WBC is now 201k. After I started treatment WBC went up to 352k and hemoglobin dropped to 10. You bruise easily at 10. I still do now. Good luck.
I failed to state I am on Brukinsa. I believe and have read that CLL, if you will, feeds, off of Lipids. My total cholesterol was 62 before treatment and is now back up to 121, with no change in diet. So you should consider a low fat or plant based diet. I was able to slow the rise in my WBC and ultimately lower my WBC with diet and exercise. However for me, I ultimately started too late. Good luck!
Lednar: I have been on W&W for 20 years. I am starting treatment this month. I have never had fatigue, night sweats, weight loss, temps, etc. - none of the physical symptoms of CLL. My WBC reached 45K once but is now in the mid 30's. ALC around 36. BUT, neuts, platelets ans Hgb all are trending down. My Hgb is at 8.8, ANC is approx .67 and Platelets are around 70K. BMB reveals 90% infiltration. I do have all the good markers though. I have no bruising or bleeding when brushing teeth etc - so go figure. It just goes to show you how individually specific this CLL is. I likely waited too long because of the lack of symptoms. Hope I didn't wait too too long. Best wishes.!
My WBC was at 365K and my ALC was at 322K when I finally started treatment after eight years. I never had any of the common CLL symptoms during my watch and wait period other than swollen lymph nodes.
I didn’t have a lot of symptoms. I was diagnosed in 2010 and stayed on W &W until last December. My white blood cell count had jumped last year. It took me months to agree to start treatment because of my own fear and concern about the quality of my life. I have been on a BTK inhibitor since last December. I went through early side effects and now I am living a fairly normal life. I continue to work P/T which is a healthy distraction for me. Hope this helps!
Good to hear. There are more options today than in years past. My brother in law, a retired doctor, told me I was lucky to have delayed treatment and then started when I did. I wish you luck on your journey!
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CLL and Fatigue
Hello from Canada
New to Forum
treatment when liver counts are off?
An unusual case?
