1. < Blood Cancers & Disorders

Chronic lymphocytic leukemia (CLL)

Posted by melvin588 @melvin588, Dec 13, 2024

I had a colonoscopy & gastroscopy performed recently and as preparation a CBC was done and unbeknown to me a pererhal blood smear. The procedcures were negative and the reason I had them done was for 2 weeks before I had cramping, stomachache, nasuesa, Diarrhea and occassional vomitting which have now all resolved. My health issues are borderline Type2 diabetes, Hypertension and allergies. My CBC showed thee below results:
WBC 9.68
RBC 5.58
Hematocrit 46.8
Hemoglobin 15.2
Platelets 162
MCV 84
MCH 27.3
MCHC 32.5
RDW 15.3%
lymphocytes 21.5 %
lymphocytes, typical absolute 2.51
Atypical Lymphocytes 2.9%
These have been my CBC results for the last 6 years. Ny perherial blood test, (the 1st I ever had in my life showed smudge cells of 17.5%.
I am a 66 year old male and after googling smudge cells, I afraid i have CLL. I do not know if I even want to go and see a Hematologist as he recommended. If it is blood cancer, I thinking I do not even want to know. Any feedback is welcomed Thank-you

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labcoris | @labcoris | Dec 15, 2024

This time it was 11.8 but the dr said it had gone down slightly. They still consider me zero stage and they just watch me. They all tell me it is a very slow growing cancer. They have patients who have had it for a long, long time. I know it is hard but try not to worry!

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marytheresacll | @marytheresacll | Dec 15, 2024
In reply to @nana120 "Yes, definitely get a confirmed diagnosis! I was diagnosed in 1996 and have only required short..." + (show)
@nana120

Yes, definitely get a confirmed diagnosis! I was diagnosed in 1996 and have only required short treatments 3 times to lower my CBC. Yes, it was a bit scary at first, but I found it didn’t change my lifestyle drastically!

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What did your three treatments consist of? What drug were you given?

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nana120 | @nana120 | Dec 15, 2024

The treatments were an oral chemo 1) Lukeran 2)chlorambucil and another one don’t remember, but it was 15 years ago and lots has changed.

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melvin588 | @melvin588 | Dec 31, 2024
In reply to @bettersleep68 "How high did your white count become? Mine keeps rising..it is 32 now after being 18....still..." + (show)
@bettersleep68

How high did your white count become? Mine keeps rising..it is 32 now after being 18....still waiting for more labs

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hello my white count was normal. 9.26

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1 reply
melvin588 | @melvin588 | Dec 31, 2024
In reply to @mereneg "Better to follow up and know what's actually going on than to sit and worry. As..." + (show)
@mereneg

Better to follow up and know what's actually going on than to sit and worry. As @labcoris said, CLL is one of the "best" cancers to have -- if you have it.

My CLL journey started late last year with increased lymphocytes + smudge cells. A medical oncologist initially diagnosed MBL (monoclonal B-cell lymphocytosis): my lymphocyte count wasn't high enough to qualify for CLL, and I didn't seem to have any Sx (symptoms) other than a few enlarged lymph nodes. So, "watchful waiting" was prescribed.

Then, this June, I developed afib (atrial fibrillation). A chest CT (to exclude atrial clots) also revealed numerous lymph nodes and an enlarged spleen. That, and further investigations, changed the diagnosis to SLL (small lymphocytic lymphoma). SLL is a variant of CLL in which the wonky lymphocytes accumulate in lymph nodes instead of peripheral blood.

I recently completed a 6-month course of Gazyva (obinutuzumab) infusions, and am taking oral Venclexta (venetoclax) until next September. Side-effects have been minimal, and I feel better.
Of interest, I recently found an old lab report that mentioned smudge cells way back in 2002! So this has probably been "building" slowly for a long time.

I hope this helps.

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thanks

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bshattuck138 | @bshattuck138 | Jan 1 10:49am

A friend of mine has CLL and has had it for a few years. He is being watched via blood tests and is not on any meds to treat the condition. He is a very healthy individual in his late 60's who runs, cycles, works out and is still working. It's a chronic condition that one can live with.
Good luck.

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marytheresacll | @marytheresacll | 4 days ago
In reply to @melvin588 "hello my white count was normal. 9.26" + (show)
@melvin588

hello my white count was normal. 9.26

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Hopefully you will be on the watch and wait program for a very long time. After just over two years my WBC was at 169 with swollen lymph nodes everywhere before I started on calquence (alcalabrutinib). I have been on it for just over eight months and WBC are still dropping and I am hoping after a year they will be in range. Good luck.

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