I can trace the increase in my ALC to an intensely traumatic time in my life because I’d been having regular blood tests for other reasons. In truth I’d never heard of lymphocytes at that time and didn’t realise the implication of them being on the increase. It’s impossible to know for sure what triggers, precipitates or exaggerates our CLL but I’ve always felt that emotional trauma and prolonged stress was a contributor in my case.
You may receive more responses if you lock your post to this community however as people may not wish to impart personal information if it remains ‘open’.
Funny you should say that about a year before being diagnosed I had been through a split in a relationship with children involved it was probably the most traumatic event I had ever gone through over so many months . A year later a routine blood test shown my WBC was 30.000 , it does make you wonder
I suspect we've all pondered this many times (and I've certainly had many stressful events in my life), but slowly I'm getting to acceptance with a realization that even if I knew it wouldn't change anything going forward. I actually asked my first oncologist and he shrugged....i thought it a bit insulting, but now I shrug too.
Not trying to be dismissive but it is what it is.
My 40 yr old daughter actually set me straight. When I told her of my diagnosis she remarked that she had a 16 year old girl on her lacrosse team going through a stem cell transplant for ALL.....this old man stopped feeling sorry for himself at that point.
Thanks for posting about this. I've thought a lot about what might have caused my SLL and trauma is a big part of it.
My sister sent me a video clip yesterday of Gabor Mate talking about trauma and the disease that can result. He specifically says that it's not uncommon for parents who lose an adult child to end up with blood or bone cancer.
Well, my only child was murdered in 2018 at the age of 24 and obviously that was extremely traumatic. So were the legal proceedings that happened in late 2019. I began feeling progressively more ill and by early 2021 I was diagnosed with accelerated SLL. It was hard to get a diagnosis because doctors didn't take me seriously and said I was just having anxiety. But no, it was trauma and blood cancer.
Further to that, my son's father was diagnosed with stomach cancer a month after our son died and he himself passed away the day after the trial ended the following year.
Prior to that, I lost my father to suicide in 2005 and a few months later, my mom was diagnosed with cervical cancer and died in 2006.
So I really do believe there is a through line from trauma to cancer and Dr. Mate explains the physiological disruption of trauma as leading to epigenetic changes that can cause cancer and other diseases.
I do think there are more material factors that can cause CLL, such as smoking and tattoo ink / tattoo removal (all of which I indulged at some point), but in my case I do believe that the severe trauma of my son's death by homicide was the match that lit the flame.
It would actually seem disrespectful to describe what you’ve been through as ‘stressful events’ Amberesque. They were life changing both physically and emotionally and must have taken an immense toll on you in every way. Respect but more importantly, understanding and concern for the magnitude of your losses.
I’ve had my fair share and firmly believe that the emotional onslaught can effect some very negative physiological changes in our bodies. It would be a strange doctor who failed to even consider that possibility.
I’m really sorry to hear about your personal traumas. I can’t even imagine that kind of pain .
I feel if I have learned anything from this nightmare journey - it’s to believe in the mind/body connection and try to interrupt the bad wolf in my head when he’s tempting me with bad thoughts.
If we can change our thoughts to be more positive than negative hopefully it will help .
Hello Steve, it’s an interesting topic. I actually have never given much thought to what caused my cll. I think I concluded somewhere along the way that it was either environmental, genetic, bad luck or some combination of the three.
It is my understanding that there is no real science linking cll and psychological trauma. If stress did lead to cancer, I seriously doubt it would be a single traumatic incident. How could an event cause dna damage? And why would that event cause cll and not one of the dozens or more other type cancers?
Most of us with Cll are older at diagnosis, so probably most all of us have suffered some trauma along the way in various degrees. But so has probably everyone else our age who does not have cll.
If psychological trauma caused cll, then we would have seen thousands upon thousands of cancer cases from those returning home from the civil war and WW2, but we did not. I left out Vietnam because we are seeing some cancers in Vietnam veterans , but those are not trauma related and more likely related to exposure to agent orange and other chemicals.
I could see very long term stress contributing to cancer as long term stress and unhealthy life styles often go hand in hand, but not actually causing it. Sites that one can find online linking stress and cancer are often integrative sites that are short on science, but long on selling remedies and supplements to fix you. I think most all doctors agree, however, that once we have cancer that stress can exacerbate it. Thats probably true with all illnesses.
Here is an article addressing your theory:
What does the research say about stress and cancer?
Being stressed doesn’t directly cause cancer.
Research has not shown a consistent link between stress and cancer. For example, a large study of over 100,000 women in the UK showed no link between stress and breast cancer risk. And a large European study of over 100,000 people found no evidence of a link between stress and the risk of common cancers.
So it can’t be said that stress directly causes cancer.
But stress can impact a person’s ability to live a healthy life. It can lead to changes in behaviour or daily routine that can make a difference to cancer risk.
Ok - so what about the genetic predisposition to the cancers at the outset of the stress/trauma? Let’s study that outcome I’m still suspicious of SV-40’s role in the polio vaccine for anyone over 65 -
Great book! The author also has a nu8mber of talks and interviews on YouTube. I have been online at conferences at which he has presented. Gabor Maté, MD is another excellent source and is a colleague of Dr. Van Der Kolk. IMHO: prolonged stress plus other opportunistic factors work together and can have an impact on physical health. I have witnessed while working in hospitals, Hospice and in my own life. My PCP is of the opinion that my diagnosis is due to HazMat exposure at the World Trade Center site after the 9/11 attacks (my brother was killed and so while I was not there on the first day, I spent a significant amount of time over a number of months as soon as the airspace opened and I could get a flight from CA. I was there when it was still a rescue operation and into recovery phase and we were told that the air was safe - and then it wasn't! How could it be given the toxicity of the materials in the building under pressure and extreme heat creating a very toxic soup that lasted for over a year, and in some areas, longer). I had a number of the non-cancer symptoms like GERD and rashes and respiratory infections and I have scar tissue bilaterally in my lungs and some damage to my bronchials, according to CT scans, etc. Difficult to document because I had no preexisting and therefore nothing to compare. Most of the non-cancerous symptoms resolved for the most part in about 3-4 years. I was in and out of NYC many times to help my mom/family, etc. but being at a distance helped. Anyway, this may be too much information, but suffice it to say that my health in general was deeply impacted by a combination of hazmat exposure and stress. Not everyone who was there on 9/11/01 got sick, but I now know many more people who died of 9/11 related cancers and conditions, or whose health has been challenged, than I know people who died that day. And CLL showed up for me a few years ago when my PCP was persistent in uncovering the cause of symptoms I couldn't seem to resolve and some that were getting worse. He prescribed the right lab tests and we got an answer. (Thankfully, I am on wait and watch status. My markers are favorable and no changes in RBCs at this point). PS Traditional Chinese Medicine does not isolate emotional and physical health from each other, rather treats them as interconnected, and I received an enormous amount of help from that system dealing with the non-cancerous symptoms that arose in the aftermath of 9/11. Functional medicine is now delving into that interrelationship as well) The important thing is to trust your instincts and do what benefits your being as a whole: body, mind and spirit!🌻
I firmly believe that high and unrelenting episodes of severe stress create a perfect storm inside us and the physiological response can be extreme and cause possible malignancy in some. Maybe there’s a higher predisposition in some. Perhaps it’s the inflammatory response at play. This is an interesting article. Older but still relevant and in my research, the theme persists;
apa.org/monitor/2008/10/str...
This is an extract from the linked article;
'The heightened inflammatory response caused by stress can lead to much graver consequences than itchy eyes. In fact, it can age the immune system, leading to cardiovascular disease, cancer, periodontal disease and frailty, according to research by Kiecolt-Glaser, published in the 2003 Proceedings of the National Academy of Sciences (Vol. 100, No. 15).
In the study, Kiecolt-Glaser and her colleagues followed 225 participants over six years and tested their blood for interleukin-6 (IL-6), a "messenger" protein that promotes cells' inflammatory response. They found that as people age, they produce more IL-6, but that increase is especially pronounced in people who are caring for an ailing spouse.
"Stress made 55-year-olds have 90-year-old immune systems," she said.'
As a life long carer in one guise or another, I firmly believe these findings.
In addition to this;
‘Stress increases the production of neutrophils (granulopoiesis) and some of these processes occur in chronic situations. Special signals move the stem cells in the direction of the producing neutrophils. In states where cholesterol or blood sugars are very high for a long time (diabetes and blood vessel disease), these signals are also high. This adds other cytokines. Signals from the brain stress system (steroids and adrenalin from adrenal pituitary axis and sympathetic nervous system) also triggers more leukocytes.’
‘Neutrophils that are dying, but not dead, increase inflammation.’
I have no explanation as to why I have CLL. If it’s due to trauma, there are lots of experiences to choose from. By the time you’re in your 60’s or 70’s, most of us have had at least our fair share of traumatic events happen to us or someone close to us.
Was it my son being deployed to a war zone? Maybe. My severe case of the measles? Possibly? Being exposed to cigarette smoke while young indoors? Another maybe.
In the end, it probably does not matter. I had no control over the measles, my parent’s smoking indoors, or any of the other events that occurred. And it could have been random.
Instead, I focus on what I can control: myself, exercise, sleep, my diet, maintaining friendships, and doing as much as I can when I’m feeling well.
I believe it was from dying my hair dark for over 20 years. There are 8 to 10 cancerous chemicals in hair dye that go directly in your pours. Thank God I count my Blessings no major stress. I believe it is caused by environmental exposures.
Yes, stress definitely contributed to mine I think. But it's likely more than just that. For disaster to happen usually several things have to go wrong at the same time.
We all experience stress and the inflamation is obviously bad for us. The difference may be that the majority are very capable of relaxing in between periods of stress, perhaps by finding a means of displacement. We all know that feeling of joy, when we suddenly realise the gloom has lifted off us for a while. I fully understand that this is really difficult when the stress relates to an early or unexpected death.
I think my CLL was due to exposure to chemicals (agent orange) when I was a 16 year old horticultural trainee. I will never be able to prove that. Meanwhile, I try to hold stress at bay. I am approaching 79 years of age, my body is wearing out and illness must be expected.
I definitely think stress affected me getting it. I always thought that we have cancer cells in our body but our immune system fought them off. I was going through high stress of dealing with aging parents; one who eventually passed due to dementia, building my mail order company and raising a family. Stress lowers our immune system and opens the door for the bad cells to join the party. I was not raised around chemicals like Roundup but I did grow up in a home (and car) with second hand smoke.
I think most of us pondered the ‘why me’ thing every now and then 🤔but I don’t believe my CLL can be attributed to any one thing.
Have I had stressful events in my life? Obviously, I wouldn’t human if I hadn’t, but I usually only stress about the little things in life (being late for something important 😠, losing my phone 😡, wallet 🤬, keys 😤, etc. or that annoying rattle in the back of the car 🤯). I rarely if ever stress about the big things especially if I can’t change anything about them.
I wouldn’t even say I was even really stressed out about my diagnosis.
It was more of a case of, OK I’ve got CLL, It’s not something I can change, so how will it affect my life and is there anything I can do about mitigating it.
The truth is we don’t really know why any of us have CLL. Could events we’ve been through or things we’ve done (I.e. smoking, drinking,,working in toxic environments) or even stress be factors that have brought on our CLL, possibly.
Even in your case, (sorry for the loss), you say that your blood test was clear at least 3 years after your last major stressful period, and were only diagnosed 2 years after that. Obviously I don’t know if you had other stresses during that period and stress may have been a contributing factor in your case, but definitely isn’t a major contributing factor in mine.
It is easy to clutch at straws and say I have CLL because of this or that, but even if we can say conclusively that ‘such and such’ caused me to have CLL. Whether it, environmental, physical, psychological or maybe, just maybe because we were unlucky enough to be born with the wrong kind of bad genes. How will that actually help us?
Further research may be helpful to stop CLL being a thing for people in the future,
But it still won’t change the fact that I have CLL now.
So I refuse to stress out about it, instead I’ll try to enjoy life the best that I can.
I’ve always thought that most diseases/conditions are due to a range of factors where the straw eventually breaks the camel's back. Some are disease specific - as far as I know the only proven one for CLL is Agent Orange - others I would suggest would be genetic predisposition, long-term dietary factors/absences, inactivity, smoking & pollution, circadian & sleep issues, infective agents and yes, STRESS/mental health problems. All these can act directly on the inflammatory, neurological, cardiac/circulatory, blood/immune, liver, kidney, digestive and other organ systems which can predispose to something. However, no one of these alone would seem to be a cause of CLL or any of the myriad of conditions that humans suffer from: there’s too much variation in who does or doesn’t get a disease/condition or the way they recover or progress. I’m not sure I’d expect to find something that ‘pinpointed’ to CLL.
I’ve had chronic stress since birth, so the death of my parents was a relief, though my siblings and I are proud of how we looked after them in their last years. Not all was bad in my childhood though, as although I was very underfed I was very well fed health-wise with often home grown and organic veg/fruit wholefoods, and boy was I physically active! – if hugely constrained from accessing the outside world.
Since 18 and leaving 'home' I have continued to eat well with piles of salad and veg but have since wondered about all the pesticides and herbicides I’ve eaten as a result since. Until more recently I couldn’t afford to eat organic food, and have only recently acquired an allotment and the time to grow things, organically. Since this is a myriad of chemicals, along with the pollution of living and working in London, it would be impossible to determine distinct causes and effects of such factors in the relatively small CLL population. Strangely though, 2 friends who also have CLL are vegetarian, eating masses of veg too (I eat fish once a week and meat once a week). Apart from around a 60+-hour working week most of my working life (but I loved my job!) and doing a PhD over many years in addition, plus poor sleep, I can’t think of any other specific likely factors.
I think our HealthUnlocked site does fantastically at informing and encouraging an evidence-based healthy lifestyle that stands a good chance at reducing the ‘straws’ or their impact on us, and slowing disease progression/extending W&W. Beyond that there is nothing else yet that we can do, except perhaps support national and international efforts to clean up our air, water and soil, to reduce violence/wars, over-control by the powerful/greedy and discrimination, and provision of effective support at times of additional stresses.
Thank you so much for alerting me to this. Your post promoted me to look further and I was surprised at how much I found. We can't change the past, but we can help to change the future. It's so useful to have some evidence to back-up not only supporting healthy eating but also healthy soils and planet to ensure our food, water and air really are healthier and safe.
Again, ethylene oxide and other pesticides/chemicals etc only seems to have affected a proportion of people exposed to them, far from all, but these coupled with other factors (not all avoidable) are probably what increase the risk to a degree that makes taking a broad look at our lifestyles and doing something about it where we can - for others too - worth it.
Incidentally, flea powders used for dogs that swim in our local ponds have been implicated in reducing dragon fly numbers and much else. For those of us that have also swum there and swallowed some water what are the implications? Are these chemicals specifically removed from our drinking water - or not?
My sister was on holiday in Camelford in 1988 in early pregnancy with my nephew when its drinking water was poisoned: a relief delivery driver mistakenly tipped 20 tonnes of aluminium sulphate into the wrong tank at the treatment works and the chemical - used to treat cloudy water - went straight into the town's mains supply. 6 months later my nephew was born with an extremely rare condition that majorly affected his bones. My sister then had many many miscarriages at many stages of pregancy until her younger son was born some years later, fortunately very healthy. We've only more recently linked these incidents and no mention was apparently made of pregnant women in the report in 2013, though this has been withdrawn. Your posting has prompted me to look further.
Exactly. That's why we must encourage governments and the WHO to continue supporting adequate studies and the long-term collection of data on exposure to even mildly toxic substances - frankly for several generations - and maintaining access to them in perpetuity.
Those with vested interests in hiding anything or failing to 'clean-up their acts' should, visibly, be 1) praised/rewarded for freely supplying data so that this is seen as an advantage to them as well as society, and 2) called out for suppressing it.
We all need chemicals in some form or other, but there are ways of making them safe for us and the environment, or finding safer alternatives. Win, win.
I had endured two failed marriages to financially irresponsible partners over a period of 25 years prior to my diagnosis. I didn’t notice anyone’s reference to Roundup exposure. I sprayed Roundup with a backpack sprayer on my family farm in the late 80’s and early 90’s prior to my diagnosis in 2003. There was no mask or other precautions taken.
Conversely, I now have a financially responsible partner and have enjoyed retirement since 2016. I had to stop Ibrutinib in 2019 due to afib and continue to be in remission in no treatment. Could the relative absence of stress be a contributing factor?
Interesting question and comments 👏 I'm sure stress from being in business contributed to my CLL diagnosis but I think my having worked in road construction during the summers of my teenage years and in particular, paving crews, was the original impetus of my CLL. One summer working in an asphalt plant and being exposed to benzene and who knows what else didn't help.
In 2013, I was admitted in the hospital with bacterial pneumonia in both lungs. The antibiotics they were giving me weren't working. They decided to give me a wide spectrum of antibiotics. It worked. But I just wonder if it had something to do with being diagnosed 2016. From Oct 2014 my brother passed away, I took care of my mother until Jan. 2016 when she passed. For those yrs. I didn't take care of myself. When I finally did to take care, I was diagnosed Apr. 2016. Illness, stress. I don't know. Cindi
steve_canada,"I am 100% convinced of this", is your reply to another way of observing this issue. And to your credit, in your original post you do put forth your feeling on the matter, "Personally I think it may have been these big stressful events in my past and how my body chose to deal with the stress". You seem to finish your post looking for confirmation when you ask for, ". . .if any of you had tied a stressful event in your past to your CLL diagnosis". [emphasis added]
I don't say that there is any improper intent in this post. Only an unexpressed need to hang your CLL on something(s). It's your particular way of coping. However, when you give history too much power by revisiting things you cannot change, you are robbing yourself of peace and the energy you need in the present to live better than what you had. Furthermore, you could be inducing more stress into your life and perhaps coloring/influencing your future.
Think of it this way, if tomorrow it was proven beyond a doubt that your contention is 100% correct, will it change the course of CLL? Will the whole world stop and make sure there is no undue stress placed upon folks so that they don't develop CLL?
As a very wise man in this forum advised me, fix what you can, don't let a condition become a problem in the first place. It isn't a direct quote, I'm paraphrasing, one, because I'm not that clear a communicator, and secondly, out of respect for his privacy.
Work as closely with your medical team as you can, live as healthy and safe as you can, and banish the worry monsters when they poke their head into your present, you own it.
I suspect that my diagnose of CLL was caused by a nuclear stress test instead of the incline stress test I should have had. Six months later I was diagnosed with CLL due to night sweats. Having said all of that, nothing I can do to change it now and little more than a guess. Blessings.
Absolutely believe stress is a factor. And I regret that a lot of my stress was probably preventable. I had one of those high stress jobs, with a newer boss who was unethical, a liar and generally played games with people with no respect. I struck with it for a number of years as I loved the job, but not the conflict.
I ended up with ongoing gut issues for multiple years. Tests and Scopes both ways showed inflammation, but that’s all. I believe the chronic stress and inflammation allowed the CLL to develop as it exhausted my blood in trying to fight inflammation.
I also had limited yard work exposure to Roundup, which is also related to Leukemia, so maybe the combination.
I was the legal guardian of my uncle with dementia while trying to take care of my father since my mother died. At the same time I worked full time. It could have triggered it but I grew up on a farm and we used so many chemicals that I assume that’s what caused mine.
This question was the very first one I had when I was diagnosed with this beast. I kept asking myself how how how did I get this. I’ve been through very high stress for a long time. I was diagnosed with lupus which never affected me. I was a drinker and because I like to party I overdid it many many times. I was exposed to cleaning chemicals without protecting myself also for a long time. I didn’t take care of my diet didn’t take vitamins etc. I was diagnosed with preaclamsia with my 3 pregnancy and my kids were born at 7 months because of this. I was also born sick diagnosed with meningitis and treated for it as a baby I almost didn’t make it. Could any of these conditions caused my diagnosed of cll? I don’t think I’ll ever know the answer to this. By the way when I asked Dr. Lamanna this question. The first thing she said was “bad luck” they don’t even have the answer.
1) to see how many of us could trace it back to personal traumas and if so hopefully prepare us better to deal with future traumas. I feel like some people may be predisposed to disease because of the way we deal or dealt with stress.
2) I want my daughters to be more conscious of stressors in their lives and deal with them assertively.
3) I believe everything stems from the gut and as EricSailor stated - the stresses in his job caused inflammation in his gut which he felt contributed to his diagnoses.
4) Aim to respect my gut and provide it with 25 fruits and vegetables each week.
They always told us to eat our leafy greens but now I realize it all contributes to a healthy gut biome which is the basis for good health.
The brain/nervous system are directly connected to the heart & gut microbiome by the Vegas nerve, so it makes perfect sense to me that stress responses can cause digestive system issues.
It seems to me that many people live with chronic stress which leads to damaging inflammation in the body & we're not even aware of it because it's normal state, if you have a high pressure job &/or demanding caretaking roles. Add in acute stress reactions & at some point it becomes a recipe for the damage to become apparent.
I see on Pub Med there’s a link between Prolia (Denosumab) and CLL, and I believe I read an article on the CLL Society website linking Osteoporosis with CLL too. They don’t know cause and effect though, merely that there seems to be a link. My mother liberally doused the whole house with Malathion (now banned as far as I know) to deal with an invasion of something or another when the ivy was taken down from the house. We were all children at the time, but I’m the only one with CLL. Stress is never good for us, and some on here have clearly dealt with dreadful stress, but because it is by definition so subjective I can’t see how they’ll ever be able to say stress led to this disease.
From what I have read, "stress" is just one of a number of things affecting our body. Toxic chemicals, sedentary lifestyle, poor nutrition, in addition to any inherited genetic susceptibilities.
Society now lives long enough for long term diseases to manifest. When the life expectancy was in the 30's from infectious disease & poor nutrition on top of hard physical labor (and accidents associated with that on top of the labor itself), we didn't see a lot of long term illness.
So now that many of us live longer, all these factors that can contribute to DNA problems that either aren't repairable or cause problems shortly after they occur, contribute to various diseases. There's likely not any one single factor that "caused" our CLL, any more than there is, say, a single infectious agent causing skin infections. A few diseases do have a root single cause. But given the presence of DNA altering chemicals in modern life, in addition to the effect one's diet has on our overall nutrition, I don't think it's possible to find a single root cause.
Look how some people have athletic skills outside the "average person. And how some succumb to things others don't. There's just no way to "know" with certainty, at this point in time, what the "chain of reaction" causing our disease is, Best we can do IMO, is to mitigate things that may aggravate our particular variant.
I have given this topic a bit of thought as how it relates to my diagnosis and other than normal life stressors. Bringing up your children, money, health of all. I can only think of 2, the first being given an early retirement package which when I look back caused me less stress than working and probably was a good thing. The other being diagnosed with CLL when I considered myself to be in great health. I have always considered myself as a 'glass half full' person. So maybe in my case it was just " sh--t happens". I will ponder the question more but I think I won't uncover much else.
Have a good Christmas and Happy Holidays, Stay healthy,
Maybe. I was a volunteer firefighter battling the 2019 2020 fires in NSW. They were horrendous. I was diagnosed immediately after in March 2020. I thought typical. I have to be different, everyone else is catching covid and I go and catch cll. Maybe the trauma of the event, maybe 6 months of breathing in thick smoke, maybe a genetic predisposition as leukaemia killed dad.
Yes I believe trauma has a lot to do with it as we store trauma in the body and yes I have had plenty in my life and also poisons worked as a florist , flowers highly sprayed and I was a nail biter and dyed my hair for most of my life . Been a smoker and have few tattoos..... I guess we will never know ...I have CLL on W&W...Diagnosed after a traumatic week where fav cousin took his own life, ex partner died , I collapsed ... then looking over blood tests my wbc count was high 8 years before...
I've always considered that mine came from a combination of using Round Up (and not washing it off my skin! What an idiot!), poor diet and then a super stressful experience that may have pushed me over the edge. And I agree that it seems like my numbers go up if I have my blood drawn right after a stressful event.
One thing is for certain is stress doesn’t help. Does it cause? I think it will be many years if ever before anyone will answer in the affirmative. I certainly had suffered stress and anxiety for the year before diagnosis but after diagnosis CLL was the least of the causes of stress- the biggest - unplanned retirement and the collapse of my social circle - still struggle for purpose
My Dad had cll. He was 45 when he died as he didnt have treatment. That was in 1968.I was diagnosed in 2001. I was the same age as my Dad. Everytime I have a stressful time there will be a change in my condition. I think I have been lucky to respond to treatment and have remission for a long while inbetween.
When I was diagnosed I was told that there was nothing I could do to help. No food or exercise could change things. Its 24 years since I was diagnosed.. I have eaten home cooked meals containing meat or fish and vegetables. I dont exclude any food but have to keep chocolate under control.
I do think that times have changed and animals are bred and fed differently. I think there are so many foods with additives and changes to their original form that its hard to avoid eating them.
I havent heard of anyone being cured and however hard folk try to eat or drink specific things, it just causes more worry. After all these years I think the first consultant was right.
My cll was genetic Im sure and there have been stressful times. In my Dads day there were mostly fresh foods.
Thank you for posting this, I have been wondering this myself since my diagnosis last January and this keeps spinning in my head.
In my case I think stress must be an important factor. I have been bullied at school since 7yo. I felt very lonely and depressed most of my teenage life.
I wasn't an excellent student my whole school/study career and my parents were really pushing me to do my best at school in a unhealthy way. The pressure of keeping up with school work and student loan/debt gave me severe stress and depression for at least 10 years long. My parents were also very protective in a restricting way, I wasn't allowed to see my friends after school. They only were happy to see me in my room studying.
I also got a lot of stress from interpersonal relationships, conflicts with friends who I eventually abandoned or dealing with break ups with petty boyfriends.
I lived in an apartment with my family which contained asbestos. We also had black mold in the bathroom and even in my bedroom due to poor ventilation.
I loved riding my bicycle to the city centre to escape my daily life, but I always rode past construction sites.
The last 5 years I finally felt I'm getting my life together slowly, I got married to the most supportive man I'll ever know and finally graduated at age 31 haha. I finally have reasons to live and enjoy life and then I got diagnosed. It's a bitter pill, but it there are positive sides. I brought me closer to my husband and it made me realise that work and study are not the most important things in life.
I am really glad you are happy now. Every time something stressful or sad happens I make myself sick with worry. I have changes in my cll and I could have predicted this.We all react to difficult times and I need to control my physical reaction because there is no doubt that a short while later it will show in my blood. Strangely my diabetes has got worse and I need insulin. Take care, Anne uk
Yes, indeed. I believe the prolonged extreme stress in my life effected my gut microbiology, which, in turn, turned on chronic inflammation. Inflammation wore down my immune system and allowed one chronic condition after the other to overwhelm my body. Add aging, roundup, and benzene exposure and there you have it. Cll. I really don't think it is any one thing. So, I am focusing on things I can control. Healthy diet. Positive attitude. Belief that God walks with me always. It wouldn't hurt for me to walk faster and more often though! Lol!
Wishing all happy holidays full of God's blessings.
I’ve often that about this and my conclusion always goes back to stress and how much stress I’ve had in my life before diagnosis. After being 10 years into this I don’t think of the whys anymore I just keep the stress at bay and live my life.
"Genetic predisposition plays a significant role, with up to 10% of individuals with CLL having a first-degree relative (FDR) with the disease.[1] Genetic factors are estimated to account for 35% of the burden of CLL in the population.[2]
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Studies to define the frequency of these clones in the general population have identified them in approximately 2% of individuals aged 40 to 60 years and 5.0% to 5.5% of individuals aged >60 years.[27,28] It was immediately clear that most individuals with such a clone did not have and would not go on to develop CLL, so a name was needed to describe the existence of these clones.[29] The name chosen was monoclonal B-cell lymphocytosis (MBL),
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Environmental risks for cancer are often difficult to accurately evaluate, because cases are usually relatively uncommon, exposures can be difficult to quantitate, and the exact timing of relevant exposure in relation to cancer development is unknown. For NHL it is believed that at least 20 years are required after exposure before disease development.[40,41] Epidemiologic studies have suggested an increase in NHL and CLL risk in farmers or agricultural workers.[42]
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A recent update of a large cohort study with prospective and accurate capture of pesticide exposure by licensed applicators found no evidence of an association of Roundup with lymphoid malignancy or solid tumors, ... This negative result could be the result of too-short follow-up as well as a substantially incomplete return of follow-up questionnaires."
...
"The Institute of Medicine review of Agent Orange risks concluded that the epidemiologic evidence is sufficient to implicate Agent Orange in CLL risk.[46]
...
Initially the lack of CLL cases in Japan after the bombing of Hiroshima and Nagasaki, and the absence of CLL in short-term follow-up of people exposed to radiation for benign conditions, suggested that radiation does not cause CLL.48 However, the incidence of CLL in Japan is extremely low, suggesting that lack of genetic predisposition may have been protective in the case of Hiroshima, and 5-year follow-up after radiation for benign conditions is likely insufficient to evaluate CLL onset.[48] More recent epidemiologic studies have implicated radiation at Chernobyl in CLL risk among clean-up workers,[49] and suggested a dose-dependent increase in the risk of death from CLL in this population.[5]"
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Looking closer at some of these risks, here are a few more papers:
B-Cell Clones as Early Markers for Chronic Lymphocytic Leukemia
N Engl J Med. 2009 Feb 12;360(7):659–667.
"Among 77,469 healthy adults who were enrolled in the nationwide, population-based Prostate, Lung, Colorectal, and Ovarian (PLCO) Cancer Screening Trial, we identified 45 subjects in whom CLL was subsequently diagnosed (up to 6.4 years later) through the collection of a peripheral-blood sample. Using six-color flow cytometry ... and immunoglobulin heavy-chain gene rearrangement..., we determined the association between MBL and subsequent CLL ...
...
In peripheral blood obtained up to 77 months before a CLL diagnosis, prediagnostic B-cell clones were present in 44 of 45 patients with CLL."
Genetic drivers in the natural history of chronic lymphocytic leukemia development as early as 16 years before diagnosis
Blood. 2023 Aug 2;142(16):1399–1403
"In conclusion, we provide insights in the occurrence of somatic variants in NOTCH1, ATM, and SF3B1 during the pathogenesis of M-CLL, U-CLL, and stereotyped subsets #2 (IGLV3-21R110), #7, and #8. We observed a lack of mutations in TP53 and a low frequency of mutations in NOTCH1 and XPO1 during the earliest stages of CLL development (Figure 2A-B) in keeping with cohort studies in MBL.[7, 8, 9,25] Notably, ATM variants and the IGLV3-21R110 mutation were detected at a high frequency as early as 16 years before CLL diagnosis, indicating a role as early drivers of (pre)MBL."
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In addition to Dr. Brown's mention of nuclear radiation above, there's epidemiological evidence that natural radon may be a cause:
County level incidence rates of chronic lymphocytic leukemia are associated with residential radon levels
Future Oncol. 2017 Aug 24;13(21):1873–1881
"The most important source of ionizing radiation for the general public is exposure to radon at home [24]. Radon is a naturally-occurring gas that is the product of radioactive elements present in rocks and soil. The gas enters homes through cracks in the foundation and can be trapped inside, particularly during winter when homes are sealed. Radon is the most important cause of death from lung cancer after smoking [25]."
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The most famous environmental cause of CLL is Agent Orange (AO).
The Impact of Agent Orange Exposure on Presentation and Prognosis of Patients with Chronic Lymphocytic Leukemia (CLL)
Leuk Lymphoma. 2013 May 15;55(1):63–66.
But it's not the herbicide itself that causes CLL. It's a contaminant.
"AO is a 1:1 mixture of 2 herbicides but was contaminated with 2,3,7,8-tetrachlorodibenzo-p-dioxin (TCDD) during the manufacturing process."
Dioxin an several forms are carcinogenic, and contaminated other chemicals, including some used in electronics for cooling large transformers or as a dialectric in large capacitors.
The study compared veterans with AO exposure to vets without exposure, and found only one demographic difference:
"Patients with Agent Orange exposure were younger at diagnosis (61 vs. 72 years, p=0.001). "
These servicemen were in their teens, 20's, or 30's at the time of exposure. So it took 3 or 4 decades for the disease to progress from the initial mutations.
FiSH was not that different between the 2 groups:
"Poor risk cytogenetics (17p-, 11q-) were found in 1 of 10 (10%)patients with AO exposure and 3 of 37 (8%)unexposed patients. Overall, prognostic factors did not differ based upon AO exposure."
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So I think we tend to associate our CLL cause with events near our diagnosis. But I think we need to go back much further.
Thanks Steve. Interesting you mention Chernobyl. I lived in an area of Northern England where heavy rain fell in the days following the nuclear fire. In fact, many radioactive 'hot spots' in the area prevented livestock farming for several decades following the disaster.
At the time, I was around 16 years old, spent a lot of time walking outdoors, and clearly remember the rainfall at this time. Diagnosed with CLL almost thirty years later. I've not managed to find any UK data about this, I suspect there isn't any. But intriguing nonetheless.
hi Steve, I firmly believe mt husbands diagnosis of SLL/CLL is connected to being a farmer and handling weed killer. Cll is very prevalent in out farming community here in Ireland and many of the men we meet during hospital appointments are farmers in the 55-70 age group.
It is a puzzler, I started to wonder in general about the radioactivity and I came up with this. . . [en.wikipedia.org/wiki/Compa...]
It would seem there's no easy answer down that alley. Intensity, isotopes, duration sort of make it apples and oranges. Although both devastating, a destructive weapon and a cataclysmic failure are just not on par to try and connect CLL in any meaningful way.
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Did you find out you “had” CLL long before it was diagnosed?
Did anyone have MGUS progress into CLL, and after treatment for CLL, did your MGUS improve or no longer exist?
New to Site Imbruvica & Rituxan how are they tolerated together.
Diagnosed at 33 with cll and have discovered I've had it from early 20's
