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
Nick
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WOW... this is the first time I have heard of this Nick... it IS the twilight zone! I'm wondering if your heart medication could of had an effect on B lymphocytes?
A very interesting patient history, and it just shows how heterogeneous this disease really is. We are all different and thus the disease acts differently with all.
From a research perspective; how much of this change is due to the heart medication, or as you say ‘ a better diet and lifestyle change and exercise ‘.?
On various CLL lists/blogs there are reports of a better diet, lifestyle changes and exercise making huge differences in outcomes. In my case I can vouch for a roughly 29% reduction in lymphocyte levels due to diet and exercise.
As ever, more research is needed. Most probably involving complete exome sequencing before and after any events.
Yes I thought about this, but there is nothing special about the changes to my meds. I have a stroke and hypertension history so was already on similar prophylaxis to those issued following heart intervention.. These drug are designed to affect different pathways to those I was already on, I guess they could have had an influence direct or indirect?
Blood pressure is now stable, platelets are dampened down, pulse is very low (if not stable all the time) and diet and exercise are improving my general health.
After such a change each time I visit for a consult now, I take a deep breath, could something else have changed? There is something reassuring about observing your own diseases behavior in the blood, the reality is that this is only 5% of the story. So as I have lost that window watch and wait becomes watch and wonder again?. Dr Ben Kennedy told us in a CLLSA presentation, "as we learn more about CLL/SLL we ascend to higher plain of confusion" or something like that. At times learning about CLL/SLL can feel like that. I now need to focus a little more on the SLL presentation as I have been more CLL study oriented for the past three years. Fortunately as a +12 I have been using that as my disorder identity and focusing on it's characteristics. So nothing has really changed and it is how it behaves in me that is important. At the moment CLL/SLL has gone Che Guevara.
I don't know what the cost of whole exome testing is to the NHS, but yesterday I was discussing the future in the UK with a lead clinical researcher about recently discovered mutations that could explain disease behavior and have prognostic value and he confirmed that the international movement towards the use of whole genome testing is well underway and that costs are now down to £600 per person. What will they do with all that information? There will be so many more questions.
So I guess Nick, that you are wondering if this a good outcome or not? Welcome to the higher plane of confusion!
Dr Sharman reckons Trisomy 12 may be good or bad depending on NOTCH status - good in that it should be more susceptible to CD20 antigens like Rituximab due to the typically higher CD20 expression and maybe bad because of the higher probability (1/3 to 1/2) of having the bad NOTCH status.
Now you've lost that window into what the lymphocytes may be doing via blood concentration, you can join the club in wondering/worrying more what's happening to your bone marrow. Like me, I expect you'll be watching your other blood cell lines more carefully from now on. Good to hear on that front that all is well other than the platelets and on that point, the last time I scored over 160 was 2 years ago!
It's great to know that the move to whole genomic testing is well under way. While there is a lot of activity in SLL/CLL research trying to correlate prognosis with different genetic markers, for "a relatively simple genome" this area of research still has a long way to go! (See second link to Dr Sharman's blog.)
Good to hear you've benefited from the interventions with your circulatory system and that the health and exercise have paid dividends - long may they continue. Don't discount the side benefits for your family there either, both in having a fitter, healthier you around and also because they will be sharing in your better diet, plus your children have dramatically learnt about the importance of diet and exercise which can only improve their futures.
I did watch a recent CLL Forum presentation about NOTCH1 mutation and how it lifts +12 out of intermediate prognosis to that somewhere between ATM and TP53 mutations. I remember last year doing the maths and seeing where it is most found and probabilities as testing was not available. I think I then came to the conclusion improvements in both testing and treatment and availability have to come together to enable personalised medicine., That is a lot further off.
I sat back knowing treatments are what they are at the moment and until I am given cause for concern don't sweat it. I read about the upside of +12 and having a greater number and variety of surface CD20 targets for Rituximab and equivalents in an article by the late Professor Hamblin for the CLL Forum: here's the PDF: goo.gl/241Qg
Your last paragraph rings very true!! We are all benefiting, We all look so different and my daughters know the value of healthy eating from their own results now. I notice at CLL/SLL gatherings how healthy all us patients seem to look!! Sometimes it just further confuses outsiders
Sparkler great to hear from you, how is the road to recovery from your recent drug side effects going? I hope there has been change for the better and you are OK?
Nick - I like the comment about a higher plane of confusion! I am convinced that most of us have "atypical CLL / SLL" to some degree. In my case, I have never had a WBC or ALC out of line nor do I have any enlarged lymph nodes. My CLL/SLL affects my kidneys and my immune system. I can't explain the changes since your coronary surgery, but know that when my mitral valve prolapse acts up (and my symptoms seem to come and go sometimes, but basically my heart is compensating) the symptoms are the same as some of the B symptoms, so it's hard to decide which doctor to call first. I suspect that some of your relief comes from having a circulatory system that is functioning more normally.
I'm glad you are feeling better, and it's nice that all of this has led your family to better habits, but I understand the frustration of not being able to get black and white answers about what our CLL/SLL is doing.
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