I'm trying to figure out what was the cause for my CLL.
It's not a sort of why me? Or what I did wrong? It's just a kind of scientific exploration around the possible causes of this mysterious disease, a research of confirmation from you guys, who for sure have made a lot of research on this subject.
I know there is no clear cause for Leukemia in general, but during my life I went through many dangerous events that some of them can be the root causes for my CLL.
Please tell me if you have an idea of which of the events in the following list may be the most probable guilty for the starting of my disease.
1. Stung by a scorpion (Indonesia) two years before CLL diagnosis.
2. Inhalation of benzene, when I was immersed in scooters heavy traffic in Saigon Vietnam.
3. Agent Orange in Nha Trang Vietnam, where I lived as expat for more than one year. It can still be found in vegetables.
4. Bathing in the Dnieper river in Kiev (river passing from Chernobyl) 8 years ago.
5. Bathing in the sea in front of Lynas (Australian mining company, specialized in rare earths extraction, known for their radioactive residues).
6. Quiescent tooth granuloma since more than 12 years (and counting).
7. Using several vaporized substances in chromatography (I worked in this sector for 6 months).
8. I had some episode of fungi in my nails due to Aspergillus Niger, from black garlic mold.
9. Extreme anger and depression after a very unlucky event that hit my life.
10. Arsenic found in my urine test 10 years ago (maybe from a tooth cavity filling?).
11. Have drunk contaminated water in Indonesia.
12. Exposition to gold mining residues.
13. Sudden fever in Siberia of unknown origin, one year before CLL diagnosis.
14. Ingested unpasteurized cow milk in Siberia.
15. Inhalation of fumes from burnt bamboo used for BBQ (Bamboo contains lead and other heavy metals like chromium, arsenic, cadmium, copper, nickel).
16. Too much Permethrin used at night as mosquitoes repellent (I've been living in tropical countries since long time).
17. A very long foot infection which could not heal (two years before CLL diagnosis).
18. Other possible infective diseases which I might have took as asymptomatic (Dengue, Typhoid fever, or other).
19. Abuse of dark chocolate and cocoa which in developing countries can contain high levels of Cadmium, Nickel and Lead. I ingested a lot of cocoa each day for 4 years, I was addicted to it.
20. Abuse of turmeric powder and coriander which can have Lead contamination in some developing countries.
21. About 100 stungs by wasps, diluted on a 2 years time frame when I was in Indonesia (My kitchen was infested by wasps).
Thank you for your attention.
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Nikotati
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It is an impressive list. Every time I find myself wondering what I did that could have caused my CLL, and I start to dwell on it, I have to remind myself that it came from my heritage. Back when my father was diagnosed-over 70 years ago, and his mom, my grandmother, and my cousins and uncle.. the doctors wanting to know what the possible cause was. thought that a continual battle with the body fighting off infections could possibly lead to this. Well it may have some affect but the genetics were there first. So no matter what the cause of the burst of this harmful disease, it might be better to quit blaming ourselves, and our sometimes unhealthy bouts in life, and wait for science to figure it out. For me, the 'Why' and 'what did I do wrong' are really kind of useless words/phrases for figuring out the cause.
lindalou5 , Indolent , Miu48 , thank you for your support. I have edited the incipit of my post to explain better the purpose of my list of possible CLL causes.
Not to sound gloomy, but after all of the items you listed you should consider yourself lucky to still be alive.
But specifically the CLL... rarely can a single cause be identified. We all wonder about it, but answers are few and far between. So instead of looking backwards, most of us have found it is better to look forward and seek the best care for our disease. Best of luck in your journey.
I think we all have been on this route of trying to figure out what might have caused it. For me I thought about it and what goes through my mind is when I worked overnight at a hospital for a couple of years. (That's not healthy for the body) I used to be a social drinker maybe that could've been the cause? At one time in my life I was under alt of stress. (Which I still am thanks to cll) then I think, oh maybe my lupus caused it? Or cleaning with bleach or other harmful chemicals? Who knows, because when we ask our doctors they don't even know. Mine told me "bad luck" I'm so mad, angry, depressed, anxious, stressed out that I have this dreaded disease almost 5 years and still having these awful feelings that changed me. Now I have white coat syndrome and am hypochondriac. 😡😡
Thanks for a touch of humor, Bruno. I also have stopped wondering and focused on what works towards more well-being and peace of mind. At times, I also seek and search as if I could go back to the future and erase all the "possible causes." 😊🤣🙏🏼 Thank you.
Benzene and Agent Orange, along with other chemicals like permethrin plus those used in industrial processes, are known carcinogens. Severe emotional stress can contribute to increased likelihood of accident and disease.
Regarding genetics, B-cell dysfunction contributes to diseases like arthritis, as well as CLL and others.
It is most likely a combination of the various stressors that somehow induces changes our bodies are unable to finally compensate. Like, there is DNA damage from benzene exposure, and is likely repaired, but over time some people are unable to keep on repairing their DNA so cancers don't crop up. Plus a random mutation may finally be induced (like a 17p deletion) that can't really be fixed IMO. Who knows the "exact" cause!
hi Sofia , from my research i was thinking the very same thing . the 3 chemicals in your first sentence along with the STRESS ... as you say are confirmed carcinogens ...... always appreciate your thoughtful responses on the forum . blessings , james
I think all of us here have at some stage thought about ‘why me’…’why did I get CLL’. . Personally, I don’t see the value or benefit of wondering why me. Rather I prefer to accept my situation and move forward. Easier said than done when you’re freshly diagnosed and your head is in a spin. Whatever it was that caused it, your way forward is to find acceptance and focus on that. Whether you’re on W&W or in treatment, try and get on with life. We can’t turn the clock back. My very best wishes to you.Emma
My father had cll and passed away in 1968. I always assumed that I was genetically likely to have cll.I was very stressed and unhappy and gave up my job for something simple. Shortly after I was diagnosed with cll in very early stages. Stress might have triggered it.
We dont know the reason but Agent Orange exposure does cause cll. There are probably examinations to show if this is the cause.
As others have said, we have to accept it, but we are lucky believe it or not that there are treatments. When I was diagnosed in 2001 the drugs were less effective. In 2010 when I needed treatment things were much better and since then the drugs are really a game changer. I have other health issues and do think why me when I feel low but I am trying to forget the cll sometimes.
I agree- There is always something that doesn’t work as we expect - other illnesses physical and emotional , other problems in life … …. We have to try and cope the best we can and not focus on the cause unless there is a way of changing something to improve the present situation … People have shared that they modified a diet or an attitude to enjoy the present …. And we are feeling down …. We have each other on this site to listen , understand and support…
I needed back surgery and had struggled with pain for years. Despite the shock of cll I had other things to think about. The op had to be done but I still have pain issues.
I have hindsight and realise what will be will be. There are some people who dont make it but it means we have to enjoy life if we can.
Its only natural to be shocked by this diagnosis but often in the early stages we feel fine. Thats the time to appreciate life and have a bucket list. Covid has done so much damage and stopped us travelling and many missing out on their family. I am trying to go places and do more.
I hope you can be well and this site gives us so much support and information. Anne uk
I would guess all of the list along with the time it took to accumulate the list. As we age more exposure to environmental factors cause more and more damage to our DNA. Even sunlight causes cumulative damage. Aging itself is hence a risk factor. We could have died young without CLL.
Dear Nikotati, I feel for you. Trying to find the cause of a disease is like looking for a needle in a haystack. I've been there. For me, it was possibly my many losses. Especially the loss of loved ones - repressing grief - and not expressing myself for fear of being rejected - not being loved. Besides that, I lived a clean life. No genetic component that I know. Now, I count my blessings and move forward, looking for emotional, spiritual, and scientific ways to improve my everyday life and that of my loved ones. GOOD LUCK on your journey. Thanks for posting 🤗
Whoa! You are lucky to still be upright and breathing. I have not been exposed to anything but was under high periods of stress prior to my diagnosis. I think extreme stress opens the door to a weakened immune system that cannot fight bad cells that are lurking in our bodies. Considering your travels and exposure to the elements, I think you are actually pretty healthy to still be kicking! Keep it up!
Good morning. Sounds like an interesting life. I had absolutely non of those things happen to me, and I still got CLL. I was once stung by wasps six time. But I had a lot of x-rays over my lifetime. Lots of broken bones. I lived an active life too. But I did sit in front of a computer(CRT) screen almost everyday, for 15+ years. Best of luck!
Wow! You have lived and experienced a lot. When I was diagnosed at 55 years old, I also wondered why me? What did I do? My oncologist even admitted that most people are diagnosed in their late 60s and 70s. But from reading peoples' comments here, I have realized that many people are being diagnosed earlier in life now, some in their late 30s and 40s, with no family history.
I have come to believe that there are increasingly negative environmental impacts, including glyphosate in pretty much all foods we eat (glyphosate/Roundup has been proven to cause leukemia), processed food additives, environmental chemicals, EMF, etc. that are exacerbating this disease in the population. There are also personal trials and relationship issues that cause stress, anger, and all forms of negative emotions that can create an environment for this disease to grow.
My personal beliefs are that gut health, stress/anger reduction, organic eating and faith are keys to overcoming this disease and living a healthy life. Best of luck in your journey!
With so many people suffering from various cancers, it's natural to wonder what's going on. When I asked my research doctor at Dana Farber Cancer Ctr. what may have caused my condition, she cited chemical exposure/environmental toxins are the most likely cause.I have no family history of any cancer. I live a "healthy lifestyle" which includes exercise, meditation, mostly organic food. Like you, I experienced a very stressful time before my illness, that was followed by a swift decline in my health and a cll diagnosis several years later.
I had my DNA done and found that I had inherited a weak response to detoxifying organophosphates (PON1 gene, heterozygous). This means herbicides and pesticides found in our non organic foods (glyphosate) and fluoride in our water, etc. build up in my body. As phd114 pointed out in their well thought out response, glyphosate is linked to CLL. I rapidly develop digestive issues and gut inflammation if I do not eat organic.
Most of us have been exposed to all sorts of toxins, and possibly illnesses that may have pushed our body too far. It's almost impossible to pinpoint a specific cause. Sofia's response is a broad way to understand the complexities and multi layered causality of illness.
Wishing you the best in your return to good health.
Well, from your list it looks like you lived a very exciting life. Good for you!
I have read that agent orange could be responsible for a cll dx. The VA has given full disability to service people who served in Nam and were exposed to agent orange.
You have lived an interesting life! I wondered too why I have CLL. My own conclusion is the exposure to second hand cigarette smoke, both in my home and at work. My brother does not have CLL but he was older when my mom started smoking again. My immune system was weak even as a child - if there was a virus in town, I caught it.
But, outside of smoking (a terrible addiction that is hard to stop) my mom was awesome.
When I was first diagnosed with CLL 8 years ago, I was going through a very stressful time at work due to a horrible manager. In December 2019 my husband was diagnosed with Lymphoma and died in February 2020, we had a Post mortem and results were, he died of a virus called CMV, no residual cancer was found in his body. Due to Covid, it was a year later we had the Inquest. In October 2022 I was told after a routine blood test I required treatment and started the combination treatment of Obinutuzumab and Venetoclax and I'm not too well with side effects of Venetoclax, although my CLL has responded great to the treatment, but afraid the side effects has caused other problems with my body and now have Severe Osteoporosis and in a great deal of pain. I'm 100% certain that stress is the factor that starts most Cancers.
Ummm....it's sounds like you had an adventurous life with hardships most of us don't have to face. When my husband was diagnosed it was 3 days after my mom's funeral - I decided to put this disease in God's basket and he's been doing a great job too. I am adding you to my prayers
Wow! what an adventurous, hazardous life you've lead. I wonder whether my CLL was caused by numerous x-rays I had throughout my childhood due to chronic lung problems - probably in turn caused by breathing in second hand smoke from parents and older siblings. When you think one in two people are getting cancer of some sort today, something must be drastically amiss - perhaps organophosphates, radio waves passing through our bodies etc, 🤔, let's hope 🙏our scientists find the answers soon.
Agent Orange is the very likely culprit. I was in Viet Nam 1968 to 1969 and the Veterans Administration finds that my CLL was caused by the exposure the defoliant "2,3,7,8-tetrachloro-dibenzo-para-dioxin". Approximately 400,000 Viet Nam veterans and 4 million Vietnamese have died from Agent Orange exposure. CLL is definitely not a death sentence though. Stay tuned to Health Unlocked and find a CLL Specialist and you will be fine.
Wow! You have had quite a wild ride! My "dull little life" cannot compare! Both my parents had lung cancer -one a non smoker- non of my relatives that I know of have had CLL so it is a mystery.
I often wonder the same thing, like you not “why me” but just scientific curiosity. And my life was not exciting or adventurous like yours! I ate healthy and organic, did yoga and meditated, exercised… who knows??? But oh I wish I could know.
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VA and disability for CLL
Could my fatigue be due to my CLL which is 'only' Stage A? My red cells are ok so I'm not anaemic.
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