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CLL Support Association
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Causes of CLL?

Does anyone know a site where they research the causes of CLL? I am looking into low dose radiation that would start it out and it shows up 15-20 years later. Employment near or around radiation or nuclear facilities. Any insight into causes would be helpful. Thank you

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There is no causation.. only increased relative risk... one of the most advanced studies is discussed on this video by Dr. Slager from tne Mayo clinic and tbe Interlymph project.

There have been several studies in workers of Nuclear facilities, and as I recall there was not much risk in CLL, however a recent long term study of Chernobyl clean up works, found a substantial increased risk,..

Here is the largest study to date... of nuclear workers

ncbi.nlm.nih.gov/pmc/articl...

Chernobyl study article

cancer.gov/news-events/pres...

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I was a teenager in the area of Europe (Poland) impacted by Chernobyl radioactive cloud. I was given a Lugol liquid to drink at that time and told to stay home (which of course never happened as we played outside all the time). I have long suspected this to be primary influencer over the disease which I was diagnosed with at age 43...I have read most of the published articles regarding the Chernobyl link to CLL...lacking any other logical explanation I have to conclude it to be the primary culprit....

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Sorry to hear about your situation. My husband worked around nuclear items but wasn’t badged so there is no “proof” he was impacted. He was in his 40s beginning to get symptoms. He was told he had MGUS factors no one could explain until Three years later he had CLL.

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Thank you for your response. I was aware of the Chernobyl study. There is also a study by a Dr Richardson that looks at this issue in the nuclear industry also. Dr Slager’s review was limited to 2,500 and focused on the genetic causes. My husband does not have those indicators. Diagnosed before 50, not a farmer etc. environment in a radiation setting is suspect. I will be looking at The Fukushima studies in the future

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The problem with a Fukushima lymphoma study are two fold.. it will be many years before CLL is seen, and the Japanese and Asians have very few cases of CLL in general and the genetic drivers of the Asian version of CLL appears be somewhat different than the Caucasian version... so it won't be a good fit...

~chris

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I agree. I suspect that Caucasians may be more pre disposed to CLL. But I hope newer technology will track down the causes to develop preventions.

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We know the causes.. short telomeres and over a million epigenetic changes... age is a factor certainly, and possibly a single catastrophic event...

Currently there are over 40 genes candidates that predispose someone to CLL, but they are still sorting through them, 13 have been confirmed

Thinking is a genetic defect perhaps passed down or acquired and an environmental trigger that changes Monoclonal B Lymphocytosis (MBL) to CLL. The rate of change is tiny in the general population, less than 2% a year.

~chris

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Thanks for the info Chris.

Is the BRCA2 gene implicated in CLL?

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Rarely, it is located at 13q12.3, and has been studied back in the mid 1990s.

What is more common is a missing RB1 gene on 13q that can make it quite aggressive...

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Hi, I was diagnosed with CLL about 3 years ago, I am of South Asian descent. What are the “genetic drivers you speak about that’s different in Asians than Caucasian”. I don’t know much about CLL. I have million of questions.. I have been reading the posts to learn a bit more. Thanks.

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I was in Europe in the Summer of 1986 a month after the Nuclear accident in Russia. My Jewish background does not help either.

I know a Father and Mother and their son who all got CLL and lived 1 highway exit from San Onfre Nuclear power plant near San Diego.

A husband and wife getting CLL is very rare.

All this is not scientific but very intersting,

Be well,

Hoffy

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There have been documented clusters of breast cancer and other cancers from toxic chemical dumps (Love Canal in NY and the Erin Brockavich movie site.The issue with CLL is that it is so long term in manifesting. Also, when death certificates are filled out, CLL is not put as a cause , it is usually an old age related cause. So that patient does not go into a data base. More research needs to be done on European subjects. Also, there is a cluster of CLL in the Dakota states in the US. Not sure if i t is from radon or that the population is European origin. Good discussions.

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Me too Hoffy, I was in Europe at the time that Chernobyl blew its top. We didn't know for several days as the Soviets kept it quiet...I got cll 20 yrs on. I've often thought whether this was related. But I understand nothing in the study's show this.

I had an Aunt who died of Leukemia in the 60's. Maybe I inherited a genetic fault?

Interesting topic though.

Best wishes From the antipodes

Sheila

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I think many times it’s a combination issues. Having the right genetics and being exposed to say radiation. A bit like someone with very light skin spending a lot of time in the sun!

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Acually high sun exposure is a reduced risk for CLL, wonder why?

Vitamin D... most likely.

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A good analogy

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Western diet and benzene exposure has been linked with increased risk regardless of race.

"Most common cancer in western countries " "traditional eastern diets have very low to non-existence..." several white papers with this and other comments similar. In the US, mention of diet causes can lead to prosecution on the Federal level. Research papers suggesting such are considered exempt as lay people don't consume said papers. Oncologists just say "eat healthy ".

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"In the US, mention of diet causes can lead to prosecution on the Federal level" Do you have any references? It is well recognised that certain foods are associated with higher risks of developing specific cancers, per the widely reported WHO/IARC reports, e.g. on red meat: who.int/features/qa/cancer-...

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Sorry, misunderstood the question. Will reply with research references. Or can google yourself "western diet linked to leukemia "

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You need to be specific in searching for CLL/SLL. Doing so, I found this 2010 paper from a reputable source - Dietary factors and risk of chronic lymphocytic leukemia and small lymphocytic lymphoma: a pooled analysis of two prospective studies:

ncbi.nlm.nih.gov/pmc/articl...

Please note the findings (with my emphasis):

"Methods

Using two large prospective population-based studies, we evaluated the relationship between diet and CLL/SLL risk. Among 525,982 men and women free of cancer at enrollment, we identified 1,129 incident CLL/SLL cases during 11.2 years of follow-up.

Results

We found no associations between total fat, saturated fat, fiber, red meat, processed meat, fruit or vegetable intake and risk of CLL/SLL. We noted a suggestive positive association between body mass index (BMI) and CLL/SLL (hazard ratio =1.30; 95% confidence interval= 0.99-1.36).

Conclusion

We did not find any associations between foods or nutrients and CLL/SLL."

Unless you can find a larger, more recent study that overturns the findings of the above, I think we can safely conclude that diet has no role in the development of CLL, other than perhaps eating too much food for the amount of exercise we have...

Neil

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The milk and meat industry spends billions to put out research showing that their products do not cause issues - just like the tobacco industry use to do.

The China study and the book Whole discuss this.

This topic is very complicated though with many confounding factors.

Dr. Greger of nutrition.org is very good too.

Hoffy.

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Not to forget the sugar industry deflecting concerns to the meat industry about fat intake being a bigger problem than increasing sugar consumption - or the supplements industry lobbying to avoid regulation. Yes it is complicated, and in part addressed by authors of papers generally being required to disclose any conflicting interests. In the case of the paper I cited above note:

"Funding/Support: This research was supported by the Intramural Research Program of the National Cancer Institute, National Institutes of Health, Department of Health and Human Service". So I would expect that this gives the paper a high degree of credibility.

Also, the Methods sections of such papers is carefully scrutinized by the paper reviewers and when published by others in the field to look for potential weaknesses in the methodology.

Neil

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I thought you'd be interested in this information from Memorial Sloan

Kettering Cancer Center.

Green Tea

mskcc.org/cancer-care/integ...

My husband has been taking EGCG capsules from Green Tea for about 10 years. His numbers have been stable all this time. I read about taking it from a report from a MIT researcher 10 years ago. This site gives information and possible side effects. My husband’s doctor says to keep on doing what he has been doing, “It can’t hurt”. Doctors hesitate to prescribe without FDA etc

I am also reading about Tumeric helping but we have not had personal experiences with that.

So, each person has to decide what to do but be open and flexible to alternative medicines.

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There is plenty of CLL specific information on EGCG/green tea covered elsewhere in this community, based on the Mayo Clinic Phase 1 and 2 papers which summarised their research into EGCG funded by CLL Topics members. There's a reference to the Phase 2 paper in my reply to the post on navigating complementary cancer treatments:

healthunlocked.com/cllsuppo...

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This was not a "comparative" study. US based study that supports the industrial foods companies. When compared with populations in Southeast Asia (eating only traditional diets, which also shows a significant decrease in the incidence in breast cancers) those populations whom consume western diets have an increase in CLL, hence the most common "western cancer" ( why would THEY call it that otherwise?).

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Again, references please!

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See my response to Nfeeney "benzene"

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Again, you are NOT providing references specific to CLL. This post is about causes of CLL, not causes of other leukaemias such as childhood leukaemias. CLL is just one of many leukaemias (though it is strictly a lymphoma). Despite it being the most common adult form, frustratingly we still don't have much in the way of certainty about probable causes. I suspect it being chronic by nature and taking a long time to develop doesn't help.

When trying to research causes, asking people about their exposure to potentially causative agents is notoriously unreliable. However, if there was a strong link, it should show up in occupational studies, where employees in certain industries (e.g. petrochemical, dry cleaning) have a higher exposure to solvents and hence would be expected to have higher rates of CLL development than the rest of the population.

Neil

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Thank you for mentioning benzene. I have read articles that say that there is a link between benzene and CLL. My husband was on an old military ship that had fuels leaking into the drinking water. He would come home from sea smelling of fuel on his clothes and skin. He was assigned there for 3 years. His CLL was diagnosed early in his 50’s with symptoms beginning in his 40’s. Besides low dose iodised radiation, benezine exposure may have been a co factor. Has anyone had similar benzene exposure?

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Benzine exposure can be through compounds built on the ring such as amphetamines, cocaine and it's derivatives , methylphenidate (does something look fishy here?) as being a factor in childhood leukemias. Aromatics used in synthetic fibers and adhesives in carpets (where do babies spend a LOT of time) linked with high incidence of lymphoblastic leukemia and brain cancer in installers. Whom will come out and say "our product could cause cancer"? Educate yourself, or be ignorant and worry free...

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There is suggestive evidence that chemical exposures (with benzene a serious contender) may be linked to the development of CLL, but results are inconclusive: onlinelibrary.wiley.com/doi...

Benzene is a chemical that certainly needs to be treated with respect - it is a known carcinogen after all. However the basic benzene ring structure is very stable and hence provides a good foundation for many organic compounds - both man made and natural, e.g. estrogen! Just because a compound contains a benzene ring doesn't automatically imply a risk of cancer...

Neil

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I'm not suggesting this is the cause of my CLL but I spent time working in a histopathology lab in the 70's and the concentration of xylene in the air, from the open containers processing the tissue, used to make your eyes water when you first walked into the lab.

We were all ignorant then but thankfully things have changed.

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Not to mention the fume cabinets that did a great job of directing toxic fumes right into your face. I was fortunate to work with a chap who was well versed in the known dangers of the solvents and acids we regularly used and educated us well.

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Yes, xylene is possibly a causative agent.

Anti leukemia agents include eating an eastern (traditional) including curcumin (turmeric esp. when combined with piperine) and EGCG (from green tea grown in the shade), but so not take these in combination or within two hours of each other as they will cancel each other out.

I have tested this empirically at MD Anderson.

Most of this data comes from in vivo studies at Mayo Clinic and MD Anderson.

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While benzene compounds "tend" to be very stable, please observe the conjecture about PBDE's and their incidental link with childhood cancer due to exposure to to bedding and bedclothes fire retardant treatments (also a suspected infertility agent).

ncbi.nlm.nih.gov/pmc/articl...

Not inconclusive. Please observe the following and note the open benzene metabolites mentioned in the previous paper. Suppression of bone marrow and other immuno suppression effects follow. Cocaine (and other derivatives- i.e. Lidocaine etc...) methylphenidate, amphetamines and other "stable" compounds are not stable when subjected to metabolic processes.

sciencedirect.com/sdfe/pdf/...

"BDE levels measured in adipose tissue are higher"

BDE is broken down under UV exposure much in the same way cholesterol is transformed into vitamin D (in adipose tissue dermal layers).

ncbi.nlm.nih.gov/pmc/articl...

Open benzene compounds are metabolites of almost ALL compounds containing such, including Xylene and others. Most of the organic compounds containing benzene are produced by the body as messengers but at a level registered on nano grams/liter.

BTW, PCB's have long believed to have been non-toxic as well...

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I was wondering read this, if there are any compensated substances other than Agent Orange and ground water at Camp LeJeune...

There have been a few benzene lawsuits, rarely hear of payouts, the Roundup class action, I believe is on hold...

It will be interesting to see the CLL rate in Flint Michigan in 15 years... a major city on bottled water...

~chris

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