I aks because I was exposed to agricultural chemicals spraying peaches in 97 and 98 - a blood test in 2011 suggested some issues with white blood cells but I was not diagnosed till 2013 when a small lump appeared on my neck. I wonder if I could have had dormant CLL all those years.... I also wonder if my young son could have been affected - I know that most people are diagnosed later in life but maybe they could have contracted it much earlier, well the trigger or whatever could have occurred in their youth...
If this is so then I reassure myself that I have a slow acting form of CLL....
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romarin
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Because CLL is a chronic disease, it is possible that you could have had it or the precursor MBL for a decade or more before your diagnosis. Many of us were aware of typical symptoms of CLL well before diagnosis.
With respect to your use of agricultural chemicals, there is a recognised causative relationship between weed killers and Non-Hodgkins Lymphoma, of which SLL/CLL is one sub-type. See:
Vietnam veterans who have been exposed to Agent Orange in service and subsequently develop CLL are eligible for disability compensation because of this link. Note that the cause of Non-Hodgkins Lymphoma doesn't have to be the active ingredient, but could be an additive like a surfactant or a toxic byproduct of the production process.
I wouldn't be too concerned about your son unless he was regularly around you when you were mixing or spraying the chemicals, or playing in sprayed areas. To reassure both of you, I'd recommend that you advise him to obtain a copy of any blood test results and check for any white blood cell test results out of range and get them investigated if they are persistently out of range.
Hi there has to be something that "causes" cll but its probably a complicated mixture of things. I have often thought about this but sometimes I think whats the use, I've got it and there are so many things going on ( hospital visits, Dr appointments, blood tests and so on) that I try to live in the moment. It does bother me and I wish I could go back and put it right or stop others from getting it because it has had such an impact on my life. Best wishes
A pan European study has found raised risk of CLL in agricultural workers exposed to pesticides... this does not mean cause and effect... it means increased 'risk'.
Also last year, a long term study of Chernobyl workers exposed to radiation, had an increased risk of CLL. Other studies have looked at benzene, 2-4D, Trichloroethylene, etc. but nothing conclusive.
So, it is likely that some people have a genetic predisposition to CLL, and something in the environment 'triggers' it.... others think it occurs by one single catastrophic event caused by gamma radiation, shortening telomeres due to aging and so on.
CLL also travels in families, F-CLL, in about 10 percent of cases, but the way it does this is very nonlinear from generation to generation....it is a large field of research... there are a number of genetic markers for this, but again nothing definite.
Hopefully, with new genetic tests and broader testing over the next ten years, things will become clearer on CLL causation.
I was diagnosed in 2002, and was on watch and wait until 2012, when I developed anaemia and started to have night sweats and fatigue. I started FCR in march, but had a reaction to the Rituxamab on the 2nd course, so continued on FC for the remainder of the course, I am now in complete remission, but still do not have a lot of energy. From 1976 until 1994 my husband and I owned and ran a Petrol Station that had attended service, and I served petrol to customers. I was therefore breathing in the fumes from petrol and diesel, day in day out... I have mentioned this to all the Consultants I have seen but none of them think it has anything at all to do with my CLL. I am not at all convinced about this. This is my first post on this site.
Ednarose, The majority of people who work with petrol, diesel and pesticides don't get CLL. With current knowledge, there is no known cause. Don't beat yourself up over this. This youtube link to Khan Academy explains how cancer happens by an accident in cell division: youtube.com/watch?NR=1&feat...
I recently had a reunion with a group of ex colleagues from work. Out of the group of about 15 of us, 4 currently have CLL,all mid 50s to mid 60s, which seems a high percentage in an otherwise pretty randon set of people. We worked it thr telecoms industry, and all would have been exposed to vry strong electro magnetic fields. I am not attempting to definitivly suggest a link,rather that there may be several possible triggers or combinations of circumstance that cause our condition. I find the only way I can deal with it all is to look forward and try to keep positive.
This is all extremely interesting. I think we have a perfect right to speculate about this and maybe it will hep find the cause. Thanks for all responses.
The organophosphate Pentachloraphenal is a pesticide used to treat wood against woodworm and there have been cases in USA where a causal link to CLL has been proven in court. The time between exposure and onset of CLL is from 14 to 17 years later. However not everyone who is exposed to PCP goes on to develop CLL, there is a genetic component too, with Northern Europeans being most susceptible.
Interestingly the two hotspots for CLL in USA are in Minnesota -the main agricultural state using the most pesticides, and in NYC where apartments are regularly sprayed for cockroaches.
I have also found that consultants are not interested in possible causes, understandably as they are so fully concerned with treatment and don't have the time.
That's interesting because I have asked myself this same question. I was diagnosed about 18 months ago at ~38 y/o. My grandfather died of CLL. Other than that there seems to be no "wow" for how I could have gotten it. I grew up in a suburban city, didn't travel, wasn't (to my knowledge) exposed to anything out of the ordinary, have 2 sisters overall healthy (one an identical twin) etc. I do know that I moved to a new city, and had Mono, had my Spleen out and I think 3-4 years later is about when my counts started really changing but it wasn't until about 15 years AFTER that, that I was diagnosed....
I know Stanford at one point was curious and was going to take some of my sister's blood but they never did....I would LOVE to know more about how and why me & not my sister (or for that matter either sister, but especially my twin!)
A good, large cohort, double blind research project into twin studies, where either one or both have CLL, would be fascinating. Identical twins are genetically identical and so if there is a genetic predisposition it may help identify the culprits. Comparing this with non-identical twins would add to the knowledge. A predisposition doesn't guarantee the development of a disease if environmental (or immunilogocal) factors also play a part - but it would be a good start.
Hi. I've worked in agriculture for over 30 years, and suspect my exposure to agrochemicals over a long period has something to do with my CLL. Back in the eighties I was walking crops that had been sprayed with chemicals that are now banned. I see now that companies employing crop inspectors tell you not to enter crops that have been recently sprayed - a bit too late for me I'm afraid. However there is nothing I can do about it now, and I wouldn't have chosen a different career. Would have taken greater precautions had I known though. Many other agricultural workers have no problems.
I used to work as an industrial glassblower ... whenever the glassware was broken during production, they would send it back to be repaired.
This involved cutting the huge pieces of quartz, washing them in hydrofluoric acid and re-glassblowing new pieces of quartz onto the original body.
We were never told which chemicals had been used during the working life of these repairs, but there was often a 'taste' coming from the blowpipes and the air around the burners became ' coloured '.
The factory that used these, to me, unknown chemicals in their products, was investigate by the authorities as the factory had a high number of cancer cases, though leukaemia was not involved.
However the hydrofluoric acid tanks that I used were found to be not properly ventilated by health and safety officials.
I was forced to stop working in 1992 from the glassblowing factory due to corneal ulcers/infection which has left me unable to work since.
Hydrogen fluoride gas is an acute poison that may immediately and permanently damage lungs and the corneas of the eyes.
My reward was no compensation and a life of fighting the DWP at every turn since .... typical.
To prove that any exposure to chemicals is related to CLL would be nigh impossible, until overwhelming proof can be obtained.
I can't even imagine how frustrating it must be to have strong suspicion that CLL had been caused by chemical exposure at work and then finding oneself in a position unable to conclusively establish the causal link. Especially when that is followed by a fight for legitimate benefits! Maddening!
There seem to be a thousand variables and no way of conclusively pinning down reasons for the catastrophic mutational trigger that sets us off on our CLL path. For that reason I can't allow myself to dwell on it but I would feel differently if I knew I'd had damaging chemical exposure.
It's impossible not to speculate though and whilst there is no family history of CLL in my family, no environmental triggers (that I'm aware of) or chemical exposure, I do strongly suspect excessive use of X-rays and scans in my case and possibly stress. Which is why I'm so interested in the series WWW is posting.
But the reality is I never expect to know or find out in my lifetime.
There are many things in our environment that cause genetic mutations (radiation (even from the sun); chemicals; viruses; immune responses to pathogens; hydrocarbons; etc). Also, stress hormones cause damage to the telomere length which, when sufficiently damaged, exposes each chromosome to genetic deletions and damage. Also, as we age our telomeres erode with normal wear & tear, causing the same exposure to genetic damage. Almost all cancers require multiple genetic damage in the part of the chromosomes involved in cell division, growth, death etc. Huge numbers of proteins, enzymes and receptors are involved in this highly complex system. If enough mutations accumulate to effect any one part of this complex cell system then cancer can occur.
The body also has a natural killer cell system that "eats" mutations as they occur and so helps prevent the development/retention of cancerous cells. If the identification of the mutated cell/gene is disfunctional, or the signalling process, or the phagocytes that eat the culprit are not getting rid of the cancerous cell effectively, then the cell "seeds" in the body and starts to "clone" itself (divide and grow, out of control). A tumour develops or, in the case of blood cancers, certain blood cells starts to proliferate and/or cannot do their job correctly.
CLL, as I understand it, can be mutations of any one or several of the stages of the development of the lymphocyte as it grows from a stem cell to a mature "B" cell or "T" cell. This includes Prolymphocytic Leukaemia (PLL) where the more immature prolymphocyte "mast" cells become mutated. The type of CLL you have is dictated by where the mutation(s) occur in the lymphocytes development, which is why we get so many different presentations of what has been diagnosed as a single disease.
In addition, TP53 is the main protein used by the body to generate or stimulate the system of "eaters" that cause cancer cell death. If you have this mutation then the CLL will be more aggressive from the start as your body is unable to deal effectively with cancer cells. This also is a complex system and there are many other potential problems that can occur to interrupt its effective functioning. How it is interrupted dictates how your CLL behaves and what side effects and symptoms you get.
We are dealing with multiple highly complex systems in the body (immune system, cellular systems, hormone system, blood system, etc), not to mention how they interact with one another and then are impacted by our lungs, digestive system, vascular system and this is all before we even get to the multiple influences from our external environment. To trace and investigate a cause or causes of CLL from all this is a herculean task. All any doctor can do is take the patient he has been given and learn which of the multiple particular chemical(s) that will benefit his patients particular health condition and then hope for the best while also keeping in mind what he plans to do next when the patient either responds (wholly or partially); doesn't respond; or develops a resistance to the drug. Thousands of variables, so little human brain power and so little time!!! It's truly amazing what they can do for us.
It's why I feel it is important that we take responsibility for learning as much as we can about our own disease and treatment, if only to understand what the doctor is doing, and not to give them a hard time when they make a mistake.
Hope these basic thoughts help some understand just how complex the whole thing is, and helps explain why we are all somewhat unique in our cancer.
Thanks for your in depth analysis Crowxyz. I could barely remember writing that response and then noted it was from 7 years ago. So much has happened during that time in our understanding of CLL and most importantly the treatment landscape has expanded massively. I’m now officially uMRD with undetectable CLL cells in my blood and marrow and am thankful for all the developments that have taken place. Thankfully I don’t have the TP53/17p deletion but even more aggressive markers now respond brilliantly to the new treatment regimes 😊
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