I am wondering if I had CLL for years before getting the diagnosis. I had nightly sweats, anxiety, dread and feeling sort of "poisoned" upon waking for many months before. (Also had Covid several months before diagnosis.
Just wondering about anyone else had that feeling almost like a premonition.
Also, how doctors would know this? (I've seen comments by people who were told they probably had CLL for a long time before diagnosis.)
Thanks
This exact question is also pondering in my head since my diagnosis last January. But mostly, what caused my CLL. I can't stop thinking about it even though I'll never get my answers.
I'm just 33yo and according to my family I always get sick very often and easily since forever. I noticed it myself when I was 21yo and this was around the time I had a severe vitamin D deficiency, got tinnitus in my right ear and was super stressed about university and boyfriends. Also, my family anyways called me lazy and slow since I'm 8yo and especially when I got older but I was just tired. I also got diagnosed with depression and avoidant personality disorder when I was 20yo, but now I think I was or still am just very tired.
My CLL diagnosis explains crystal clear why I got sick very easily over the years. My diagnosis itself took 1,5y because the doctor didn't expect me to have CLL at my age, my gender and ethnicity.
I'm much older than you, but have had a history of every cold, becoming a serious illness - multiple pneumonias, coughs that would linger for months with severe fatigue. I had three bouts of meningitis in my 50's. Other than high blood pressure, not otherwise ill, but it seems that my immune system has been challenged for a long time.
I had it in 2017 not diagnosed until November 25-2019 . I only know this because I have regular blood tests because of my thyroid disease and I check my blood results .
Oh indeed, I went for regular check ups since 2012 to check my vitamin D, but since 2017 my c-reactive protein (CRP) was slighty elevated. My GP always asked if I recently had a cold or something and that they should investigate this. They never did something with this and I never went after it.
I go to the Cleveland Clinic every year for a complete physical, so I have a good idea when my lymphocytes were elevated. They popped out of the normal range in 2018 and gradually increased until my formal diagnosis in 2020. So I did not have it very long before formal diagnosis.
dhahran.That was interesting you mentioned very lo tinnitus .
I have had this for a number of years, sort help from ENT .
I was given two hearing aids which helped and advised what would help.
Always worse when you put your head on the pillow at night.
I did nor associate it with CLL.
Until now you have mentioned it .
I had not seen it mentioned in my research of CLL.
Most people had CLL many years before diagnosis. Symptoms that were attributed to something else or were otherwise unexplained could have been related to CLL, especially if at an advanced stage when diagnosed. A normal blood count or imagining study in the past would be one clue of the timing, but it would be difficult to determine exactly when the leukemia developed. And the same can be said for other hematologic malignancies and cancers.
I was diagnosed in the summer of 2017 (one of the lucky ones with very slow progression - beginning to think there is a possibility of never needing treatment). I lived in France back then where regular blood tests (at that time) were the standard to establish what was "normal" for you so if you were ill changes were obvious - anyway. 2015 my lymphocytes were slightly above the "norm" - not enough to alert the doctor or worry me (again, in France you received all test results with a copy to the doctor). In 2019 another routine test, they were (to my eye) worryingly high (I now know that that figure was very low for cll) so, (having been on doctor google) I went to the doctor, she asked me what I thought was wrong, agreed with me, thought it was CLL rather than one of the other nasties, then said we couldn't be sure without tests. So when the tests came back that it was "only" CLL it was sort of a relief (for context, many years ago before the improvement of treatments two of my brothers at different times had died from related but different varieties of leukaemia).
So, long (very long)! story short - I know that my CLL was present two years before I was diagnosed.
I'm sure I did. My ALC was higher than the usual 1.5 at least 8 years before diagnosis. That's as far back as I could check.
I was diagnosed in 2012 with a WBC around 40. We looked back at previous blood tests and it seems I had it back in 2008 with a WBC of 15. My doctor just didn't notify me of it then.
I was diagnosed this year with SLL. Found by routine mammogram lymph node. then US, then biopsy, then CT to stage it at 3. Very slow growing variety.
My blood work is all within normal ranges.
I have been complaining for years - maybe close to 10 about fatigue. And was just told it was my age and not enough cardio, or stress, or doing too much. Because nothing could be found on testing.
So I'm on W&W- every 6 months to follow. Trying to "detox" my products used at home, better water and air cleaner,, organic diet, mostly plant based. And sleeping 10-13 hours a night... although that doesn't even help the fatigue.
Will see in a few months if I've been able to affect the size and number of nodes affected.
I had blood tests every year as part of the Wellness program at work and my labs were normal one year and then 12 months later ALC 30.
My CLL specialist said I had it several years before diagnosis. The reason no one caught it sooner was I stupidly thought a naturopathic doctor was in my best interest for 8 years. No tests of any kind done during this period. When ACA became available and affordable I saw an integrated medical doctor who ran tests and there it was, CLL.
You probably have had it for years before diagnosis. The evidence is historic lymphocyte counts. Some people rarely have routine blood tests and so it goes undiagnosed. Others who have had blood tests the higher than normal lymphocyte count goes unnoticed by their GP.
It can also be historic changes in other blood counts and with the SLL expression of CLL/SLL, changes may not show at all, but nodes might be noticed enlarging.
I quickly developed stage 4 neutropenia after a routine blood check. My diagnosing haematologist found that I had a very enlarged spleen - it was protruding a couple of centimeters below my rib cage. My spleen didn't get much larger in 11 years of watch and wait and given it likely didn't rapidly enlarge and then stabilise, it was probably the CLL/SLL that was causing my fatigue. When my GP checked back for earlier suspicious blood tests he found that I was borderline neutropenic about two and a half years earlier. I'd been struggling with fatigue for much of the decade prior to my stage 4 CLL/SLL diagnosis, for which I'm pretty certain CLL/SLL was a major contributing factor.
Neil
My elevated blood counts were discovered during a routine wellness check at work also in 2010 - still on W&W though needing IVIG infusions sporadically.
In a timely, related post steve_canada asks How did it happen? healthunlocked.com/cllsuppo...
I don’t think I had a premonition, but I wasn’t surprised when I was diagnosed with CLL at 67. I seem to have had a lousy immune system since I was a child. My mother said I was always sicker than my siblings. I contracted mononucleosis at 19 and was diagnosed with Chronic Fatigue Syndrome at 32. As a teacher, I caught every virus that went through the schools; I never had a year when I didn’t need to take all of my sick days. When I had children, I had to quit working full time. I didn’t have enough energy to take care of my kids and also teach. The only good thing that came out of Covid is that I haven’t had a bad virus since I started using a mask.
A CT 7 years before diagnosis was the first sign with elevated absolute lymphs crowding the threshold but not breaking it for another 2 years. I was 24 years younger than the median age at diagnosis.
I knew something was wrong at least a year before my diagnosis. It may have been shortage of energy, because I remember using the phrase "systemic collapse" to describe it to a friend. Nonetheless, CLL diagnosis came out of the blue from a routine blood test, with a lymphocyte count of 5. I was asymptomatic for years and started treatment 13.8 years after diagnosis.
During watch and wait my lymphocyte count increased steadily by about 40 % a year. So out of curiosity I did the back-calculation, assuming the same rate of increase from inception (single cell) to diagnosis. This told me my CLL had started 7 years before I was born.
My conclusion is that I had CLL, or rather low count MBL which later progressed to CLL, from a young age, possibly at conception.
To date researchers have identified low count MBL in biobank blood samples up to 16 years prior to CLL diagnosis.
CLL diagnosis 
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Should I go to a CLL specialist?
