Has anyone out there had this problem? I have excellent prognostics...hyper mutated, normal karotype, low 38 or is it 36 presence , 0 zap 70. No del 17 or del 11. Diagnosed April 2013, ANC 6.4. All other blood counts good. Low LDH , beta microglobulin at I.6 In Feb2014 (same as prior year). Was given really good prognosis, but am being seen every 2 months. 2 weeks ago , ANC at 24.9. Every 2 months an increase of five or so. The doctor has offered treatment, but why ? One small lymph node, and blood work fairly stable. What is going on? I have no symptoms of antyhing wrong, but doubling at 6 months. Any advice? I know it is not supposed to count until ANC is 30. Is the doubling considered after that? None of this is making sense . 2 CT scans showing no nodes. Help me understand doubling as I do not understand this.
Rapidly increasing lymphocytes: Has anyone out... - CLL Support
Rapidly increasing lymphocytes
I think you mean absolute lymphocyte count (ALC) ... 6 month doubling isn't really important until over 30K as you mentioned... then it is only one factor... B symptoms, falling platelets or RBC etc...
Time for doctor who treats a lot of CLL, many aren't up to speed...
This is well discussed in the CLL Guidelines...
bloodjournal.org/content/bl...
~chris
Hi Wetumpka (great name!),
This article might help. It can explain in much better and skilled detail and hopefully might answer some of your questions.
cll-nhl.com/2012/12/when-to...
My only observation would be don't be rushed into treatment based solely on 'numbers'. Are you under the care of a CLL specialist? I absolutely agree with Chris that now may be the time to consider this.
Newdawn
Wetumpka is a town in Alabama where we purchased our beautiful basset hound, so not very original. No, I am not under the care of a CLL specialist yet, but it will be a good drive to get to one...I'm thinking MD Anderson in Houston, Texas. I know they are not overly enthusiastic about too early a treatment. And neither am I. It is very hard to see such rapid progression, and still feel fine. Thank you for your interest and answer, Newdawn.
Confused. ANC should be normal in CLL. ALC doubling is not an issue til >30.
Sorry, I did mean ALC, instead of ANC. It is climbing steadily, and has doubled, but not at the high range of 30. are you saying that no doubling before it is 30 counts? Thank you so much for responding...I do need a new doctor. I feel too good for being treated, although this week am noticing some small neck lymph nodes. As I am 76 you can understand my reluctance for chemo yet. This site has been so helpful...today I got a Prevnar(spelling) shot and had to fight for it. Will get pneumonia vaccine in 2 months. Hope I got that right...info from this site.
Have forgotten how to post. Read this site daily, and it has kept me sane. Your comment that ANC should be normal has confused me, as mine is going up steadily...it is about 11 now. What does neutrophilia indicate? The ANC for the last year and a half has been 4.7, and now climbing. I still feel fine, although ALC is 63 now and some small nodes.
As your ALC climbs, with automatic counting, some CLL cells can be incorrectly categorised as neutrophils, so your rising ANC may be an illusion due to miscounted CLL cells. (Brian's comment about ANC being normal in CLL meant that CLL doesn't usually affect the neutrophil count - well not until CLL bone marrow infiltration is high or you are being treated.)
The only way to be certain of the true ANC is to do a manual count, but that really isn't necessary in your case, as the normal ANC range is roughly between 1.8 and 7.5, so your ANC is fine. Neutrophils are your body's main means of defence against bacteria and are the first responders to any infection, so if your ANC really is higher, there are many here who would like a few extra!
How to post:
support.healthunlocked.com/...
Neil
Thank you so much for your explanation, as my case is really weird. My ALC is advancing fairly rapidly, but all my platelets, Hb. Hematocrit are all well in range, and I feel great. No doubling in one year of ALC, but it is certainly on the march...wish it would slow down. I so appreciate this site, and I read it every day. I really should post more and probably will, but feel as if I have nothing of interest to say.
I think you'd be surprised to find how often CLL related matters considered 'nothing of interest' can draw far more responses than expected, simply because others think the same and don't suspect there could be others sharing the same concern...
Hi Wetumpka,
First off, a couple of observations from your post. When you speak about rising "ANC" (Absolute Neutrophil Count) I think you mean to report ALC (Absolute Lymphocyte Count). "Normal" as a report finding from a FISH test is not what one might expect because Normal only means that no damage was found in any of only 5 or 6 chromosomes that are usually probed. You undoubtedly have chromosome damage somewhere.
Your ALC if under 30 is too subjected to fluctuation by transient infectious agent response to be a concern at this time particularly as you report feeling good.
Do not allow yourself to be talked into treatment at this time. Sounds like you need a doctor more savvy about CLL. Your biggest danger at this time is an ignorant Doc.
WWW
Hi there! All I know is they said no 17 del, no 11 del, low expression of CD 38, no trisomy 12 and No expression of zap 70. They probed 200 cells. I think this lab just meant in this particular group of things showed normal female karotype. I understand that if you dig deeper there will be all sorts of who knows what, and at least I am hypermutated. Tring to hold off for a targeted therapy...would that be great! However ,I will be my own advocate because this site has sown me so much.
Hi It may mean a long drive to get an appointment with an expert but it may be your best course of action. Good luck.
Thank you for your helpful advice. Everyone is telling me this, and I think it is what I should do.
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