I was treated for AIHA in January 2022 with rituximab which got me back running. I have lost a lot of my fitness since then.
My recent results (my interpretation) indicate disease progression. I could use some help figuring out what my test results mean. Thank you, Andy
May 3, 2023, results
Lymphocyte Count 14.0x10E3/ul (high)
SPE-Total Protein 5.8 g/dl (low)
Gamma Globulin .61 g/dl (low)
Kappa 4.67 (High)
Kappa Lambda Ratio 4.3 (High)
Final Diagnosis An un-muted IGH V rearrangement was identified. The level of mutation was 0.0%. The IGH V allele identified was 1-69’06. Fish 09/09/2021
Interpretation
Fish analysis did not detect trisomy 12 (cen 12) or deletions of 6q (6q21, 6q23), ATM (11q22.3), 13q14, and TP53 (17p13.1), common abnormalities observed in CLL/SML.
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SantaZia
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Hi SantaZia,You might consider that you have disease progression, but from just that one set of results, when trends are what's important, it's not possible to say. From what you've shared, your lymphocyte count is fairly low for someone with CLL. It's not even half way to a count of 30, when CLL specialists begin to get interested in lymphocyte doubling time happening faster than every six months. We have members in watch and wait with lymphocyte counts in the hundreds.
Gamma globulin can be low when you have hypogammaglobulinemia (low IGgG, IgA, IgM), a common condition with CLL. Likewise that's a contributor to low total protein.
CLL also expresses either kappa or lambda light chains. In your case it's kappa, which is also why your kappa/lambda ratio is high.
About 50% of us are diagnosed with unmutated IGHV, That correlates with a shorter time in watch and wait, but people with unmutated IGHV, can still have long periods in watch and wait.
Your FISH results have not reported deletions, which is the second best result you can have. The best is 13q del.
How are your haemoglobin, platelet and neutrophil counts holding up?
Neil that is so helpful. Although I figured out my Prostate Cancer which is in remission for past 4 years. I haven't been able to deal with all the stuff with CLL. My appointment isn't until June 6th so your information has helped me greatly. Thanks Andy
HGB
May 3, 2023 13.4 (Low)
Dec 05 13.1 (Low)
Sep 14, 2022 12.8 (Low)
Feb 04, 2022 13.2 (low)
Oct 11, 2021 12.2 (Low)
HCT
May 3, 2023 40% (Low)
Dec, 05, 2022 39%
Sep, 14, 2022 39%
Feb, 04, 2022 36%
Oct, 11, 2022, 37%
I have cleaned up these results. Hopefully more readable.
This is very difficult to read. Can you simply take a picture of your report? You can "reply" to add additional pictures. It may be helpful for you to keep track of things in the CLLSociety's template they developed for us:
I can't see the dates for your test results, nor can I see the inclusion of your results that you mentioned from May 3rd 2023. Have you had tests done at different labs? (That's not desirable, as it adds another variable due to lab instrument calibrations, but sometimes that's unavoidable.) So with the uncertainty of which way to read your results, I'm not sure if I'm seeing a recovery from your recent AIHA or CLL progression. If your results are listed from most recent to oldest, right to left (which is the opposite to what is more commonly seen), your haemoglobin and platelets are trending down. This, with your last lymphocyte counts from 3.90, 7.36, 25.91, indicate that your CLL is indeed progressing. With both your platelet count and your haemoglobin trending towards the trigger points for commencing treatment of under 100 and under 10 respectively, that would explain your specialist's concern, as it shows that your CLL bone marrow infiltration is increasing. How long you have to decide on your best treatment option depends on how fast that trend is occurring, if I have that interpretation right. You need a buffer for the hit that the treatment drugs have on your bone marrow production, that occurs before treatment begins to clean the CLL out of your bone marrow, so that your counts improve. Otherwise your body will struggle more to recover and you might need some transfusions to support you.
You should now appreciate the value of entering your blood test results in the CLL Society template that SofiaDeo suggested. The spreadsheet automatically plots your trends
Thanks Neil I’ll see in June what happens and let folks know. I’ve tried the CLL society excel spreadsheet a number of times and today, it doesn’t hold the values I enter and disappears and I start over.
I'll set up a spreadsheet soon. Yes I did switch over to the CLL Specialist at UNM Cancer as my Oncologlist went to a new practice without good support. I have always used the CLL Specialist only one in NM as a second consult, but now is my primary. I expect in June a full range of tests and perhaps a new FISH. Thank you and everyone for your expertise.
You download the template onto your computer/device containing software that allows you to use Excel. Then you enter the data on your personal file on your device. If you can't save/use "*.xlsx" type documents, you device can't save the file. If you're just accessing the template on a bare bones Chromebook or smartphone that might be the problem. Make sure you have an app for storing/manipulating Excel files before downloading the CLL Society template.
Hello Andy. I am no expert but can venture a lay opinion on some of this. I cant read the dates on your tests to be sure, are your hemoglobin and platelets actually trending up as of your last labs? That would be more indicative of improving cll if your hemoglobin and platelets are actually getting better.
As Neil wrote, a normal FISH test is a good to intermediate finding. On average folks with normal FISH do quite well. That might be offset somewhat by your unmutated ighv test result which, on average, is more aggressive than mutated ighv cll.
Its good you dont have TP53 mutation. Your FISH test looked for common chromosome mutations with cll. A normal finding does not necessarily mean all your chromosomes are normal, Its just the typical aberrations like 13q. 11q, trisomy and 17p weren't found. I would suppose that if you have cll and a normal FISH, you still have some chromosome damage somewhere, its just not one they found. I could be wrong, you may ask your doc about that.
I had AIHA and treated for my cll soon after. I would think the mere fact you had an AIHA episode is one indication your cll is active and causing problems.
When I do labs my eyes are drawn to my lymphocyte counts, my hemoglobin and my platelets. Hemoglobin below 10 and platelets below 100 are in and of themselves indications treatment might be appropriate. If your hemoglobin on latest test was 13.1 and platelets are over 200, in my book that's actually good for someone with cll, particularly if those numbers are part of an upward trend.
What in particular was your specialist concerned about? Maybe I am reading the dates on your labs wrong.
A final thought would be to ask your doc if you have ever had next generation sequencing (ngs) to look for common gene mutations with cll. FISH looks at chromosomes, NGS looks at the genes themselves, like TP53.
Good luck to you. Your hemoglobin, platelets and neutrophils look pretty good to me, but I'm no expert. I am curious as to what it was about your labs that concerns your doctor.
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