I am about to have to change my profile and ensure I start using CLL/SLL. Today I visited my consultant and we were able to confirm that for six - months there is no longer any evidence of CLL cells in my peripheral blood. My counts are pre MBL and have been for six-nine months!!
My greatest concern these days has been my ticker this caused a recent unscheduled admission for observation the other day and blood draws (fortunately MI's were ruled out this time). So my CLL consult today was very swift (I had my results in hand), AND UNUSUAL. A year ago in March I was suffering with what I thought were severe CLL symptoms and lymphocyte counts had been climbing steadily for two years following CLL diagnosis and appeared to be doubling every twelve months and had reached 19 well above the minimum of 5 for a CLL diagnosis. At diagnosis I was diagnosed as stage A CLL with B symptoms. In March last year I received a primary heart intervention and was stented following heart attacks. After which over six months the CLL left the blood.
I surmise that the inflammatory situation caused by narrowing coronary arteries and heart disease were causing a feed forward loop that was keeping CLL cells in my blood and fueling development of more in my proliferation centers? For following removal of the inflammatory condition, a better diet and lifestyle change and exercise Elvis appears to have left the building, Could the massive fatigue I used to experience and difficulty getting about have been heart disease or the result of a cytokine storm that it continued to fuel?
He's gone somewhere and not left the block, CT scans confirm that nodal involvement is more widespread and in all regions although not bulky and my marrow was 45% infiltrated three years ago and FISH confirms I am trisomy 12.. So today I was met by my consultant agreeing with my thoughts of three months ago. I have SLL.?
My immunity is now more impaired and I have a weakness at fighting off subcutaneous bacterial infection and react badly to any insect bites too all other counts are good only platelets have drifted downwards from the high 200s to 160. trisomy 12 is more common in SLL too I believe.
So how do we now stage my disease and diagnosis and should I start thinking in Ann Arbour staging too. Or just consider myself CLL on watch and wait (-: What tests should I request? Is morphology sufficient?
How many patients have had what was behaving like CLL become the SLL presentation of the disorder after years of leukaemia presentation.
CLL/SLL is truly a heterogeneous disorder. it's like the twilight zone..
Any thoughts welcomed