I was diagnosed with CLL/SLL Jan 2023.i completed O and V March 8 th of this year. My most recent labs show that my ALC went from 2.45 in March to 4.8 with yesterday's labs. Almost all of my numbers are down. (Rbc'sHgb, hct, platlets) Throughout treatment my labs were close to within range except for the occasional drop in ANC, never requiring intervention. I received a call yesterday to schedule a PET scan. So now I don't know if I should be concerned that the treatment didn't work or that I am not in remission.
Has anyone else experienced their numbers doubling in less than two months?
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Shangonmom
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You do need to be aware that small changes in your blood test results may not be due to CLL/SLL, but the inherent limitations in testing accuracy, more so if different test equipment is used, a different lab, time of day or level of hydration. This is why trends are important. Possibly you have more of a Small Lymphocytic Lymphoma presentation than that of CLL, so if it is returning, it's your spleen, nodes and bone marrow that are likely to first show indications of it returning, rather than your ALC. If your CLL/SLL is returning, then the triggers for restarting treatment are the same as before.
I'm puzzled that you are having PET scans to check your nodes and spleen, unless it's because of your prior Hodgkin's background. CT scans are recommended over PET scans, What's most important is how you are feeling? You were quite ill when you were first diagnosed.
Given your atypical history and that you live in the USA, perhaps you should consider taking advantage of the CLL Society's one free Expert Access video appointment with a recognised CLL specialist?
Thank you for your response. With my diagnosis of Hodgkins in '89 I had a staging laparotomy and splenectomy as well as 11 weeks of XRT. My oncologist says that because it's not in my "blood" he wants either a bone marrow biopsy or PET. He also stated it will take approximately three to four months before I "feel better" after completing treatment. My energy is definitely improving and I had gained about 5 pounds over the last few weeks but now I'm losing again. I'm trying not to think something serious is going on. Hopefully my body just needs to recover...
I believe ALC doubling from 2.45 to 4.8 in two months is pretty rapid, thus I am not sure about other genetic indicators in your blood test. If it has not been checked, please consult your GP, since there are good facilities and CLL specialists available in the USA. Good luck!
Thank you for your post! I think I'm just nervous. I am IGHV mutated and markers were performed with bone marrow biopsy. Nothing showing an aggressive form...
In the grand scheme of things, a jump from 2.4 to 4.8 could be meaningless, random, a blip, who knows?
Maybe you fought off a virus of something?
See, when I was on V & O, my ALC got quite low, like to .2 once; when it doubled to .4 the next month, then eventually .8, we were happy! So doubling's not always necessarily bad, if the numbers are low.
My understanding is that, once the ALC is over 30, then doubling matters, but not so much when the numbers are so small.
But hey, I'm not exactly AussieNeil, so what do I know, really?
Hi Shannon, I just reread your bio and previous post, and I get the feeling that you're not seeing a CLL specialist. While a hematologist handles diagnosis, treatment, and management of blood disorders etc., a CLL specialist is different. I can't imagine a CLL specialist sending you to a GI doc after finding that you had CLL. And, like AussieNeil said, a PET scan is not the normal test for CLL. I strongly second his suggestion for a second opinion from a CLL specialist at the CLL Society. Here's the link: cllsociety.org/programs-and...
I also notice that you haven't mentioned anything about your genetic markers or IGHV mutational status. This essential data is used to help understand & predict the expected course of the disease and especially to determine the appropriate CLL treatment. A CLL specialist does these tests before treating a patient. Hopefully you rcvd them already. But when you say "I don't know if I should be concerned that the treatment didn't work or that I am not in remission," my first question is, what are your genetic markers?
I don't mean to alarm you. And the treatment you rcvd would not have harmed a CLL patient with aggressive genetic markers. Your current ALC numbers don't seem like much to worry about at the moment. I just want you to have the best possible chances. Having CLL is stressful enough w/o having to constantly wonder what's going on. Knowing that my CLL specialist has my back removes a ton of stress from my mind. I want that for you.
I am IGHV mutated. CD5 100%, CD20 30% bcl2 100% CD23 70% LEF1 50%. I'm probably just nervous. Thank you for your post! It is very comforting to hear from other people who have and are going through this!
I would strongly encourage you to find a CLL specialist. As you can see from the image accompanying this post, CLL doesn't show up on PET scans healthunlocked.com/cllsuppo... , so their use is questionable unless your specialist is looking for signs of another lymphoma. Meanwhile try and relax (hard I know) and monitor your ALC, haemoglobin and platelet trends - they could well be better next blood test.
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Different ALC numbers
ALC (absolute lymphocyte count)
Huge change in doubling time of WBC
Anyone out there with a very high ALC and not needing treatment.
ALC COUNT?
