in our discussions about cause of CLL - CLL Support

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in our discussions about cause of CLL

craterlake profile image
20 Replies

Good morning . in our discussions about what causes our CLL there were a number of theories with some emphasis on diets , but of course no one knows .. i suggested that stress either mental or emotional along with physical stress from disease has played a big roll in my own CLL progression since i have been very careful about my diet for years it would seem that it was not a factor .. i just found this statement on the myeloma.org site .. it is from an article by dr. brian durie .--this is in

reference to myeloma not CLL ... could it very well apply to us also ???... quote;

"Stress can be a very destructive force when it comes to myeloma. Stress really disrupts the immune system and myeloma is a cancer of the immune system.

In addition, the stress hormone -----noradrenaline----- (the "flight" hormone, versus adrenaline, the "fight" hormone) can actually trigger cancer cell growth directly. " end of quote ----- he also states that this triggering of cancer cells has been demonstrated in lung cancer and other cancers but not directly in myeloma cells . possibly because it is much easier to monitor hard tumors for there cell proliferation ---- they say exercise neutralizes stress . so aussieneals comments about exercise seem essential council for all of us whether we have CLL or not .. as for me personally the help and encouragement i have received from many of you on this site has reduced my own stress considerably .. especially in the areas of my own treatments and the links to the financial assistance have been such a blessings . thank you all again . lets keep looking up and moving forward .... james

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craterlake profile image
craterlake
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20 Replies
craterlake profile image
craterlake

yes .. i agree ..and the older i get i find it more difficult to deal with stress .. ... good point about the hospital staff ; years ago they enlisted the help of nurses to research the digestive system and the negative effects of eating between meals because the nurses were accustomed to keeping track of things and also good at accurate record keeping .. 👍

wellbeingwarrior profile image
wellbeingwarrior

Personal story and "Case Study of One" reply.

I've been incredibly fit and healthy throughout the majority of my adult years. I also have two generations above me with CLL. I had an ALC of 4.5 (nobody thought anything of) and then it was 29 within 4 years (the next time I had blood tests done after that). I was fit and healthy over those 4 years albeit with quite a lot of emotional stress due to a personal situation. (Acknowledging stress is not conduit to optimal health).

On diagnosis, I focused wholey on my diet and made exercise a non-negotiable despite increasing fatigue and kept on keeping on.

I still have daily/weekly exercise practices that are more healthy than most yet the disease continues to progress.

I 100% support lifestyle changes to help with health but have personally found when these foundational practices were already in place and were continued, I've still not stopped the bus from climbing the hill and it's left me wondering.

I don't think stress caused my CLL, but I recognised that life stressors may have kicked it off as it was in my inherited DNA.

Case study of one. :)

country76 profile image
country76 in reply to wellbeingwarrior

Do you have a Trisomy 12 marker

wellbeingwarrior profile image
wellbeingwarrior in reply to country76

Sorry country76, I do not know.

claree_ford profile image
claree_ford

Just to complicate the issue the tendency to develop some form of blood cancer does seem to run in families (though apparently not hereditary though I don’t understand the difference). In my case my youngest brother developed Hodgkin’s in his mid twenties, my oldest brother myeloma in his mid forties. (My other brother still going strong - hurrah). So on the whole I wasn’t surprised when I was diagnosed (living at the time a lovely stress free lifestyle). So, if there was a cause other than a family predisposition it must have happened in our youth - so for my eldest brother (born 1942) in the 1940s and 1950s, for me (born 1954) a bit later and for my youngest brother (1947) somewhere in between. I sometimes wonder about nuclear testing but I don’t want to go all “flat earther conspiracy theory “ on you 🌍. I suspect there are a number of factors that increase the likelihood - like smoking and lung cancer, statistical link but not everyone who smokes (I don’t and never did - lucky me) goes on to develop lung cancer ... I expect “they” are looking and researching.

AussieNeil profile image
AussieNeilAdministrator in reply to claree_ford

Around 10% of CLL is considered familial, that is there is a significantly higher risk of CLL or other blood cancers occurring in blood relatives for 10% of of us. There are a couple of centres around the world doing specific studies in this including the NIH in the USA. Those with an Ashkenazi Jewish heritage have a recognised higher risk of developing CLL and there appears to be some genetic basis for the considerably lower risk of developing CLL if you have an Asian genetic background.

Neil

claree_ford profile image
claree_ford in reply to AussieNeil

Thank you. Very interesting. I do worry (not that I can change anything) particularly about two of my grandchildren as their other grandmother had myeloma so they have the link from both sides. I can only trust that if any of them develop any of the related nasties that medical progress will have continued to the point that the word “cure” can be used. I understand they’re already using it for Hodgkin’s- some things have definitely changed for the better since 1975 when my youngest brother was diagnosed. Best wishes to you. Clare

Kwenda profile image
Kwenda

Chronic Stress May Speed Up Immune System Aging.

WHEN YOUR IMMUNE SYSTEM TIRES OUT, DISEASE RISK GOES UP. BUT THERE ARE WAYS TO KEEP YOUR IMMUNE RESPONSE YOUNG AND STRONG.

A study in the Proceedings of the National Academy of Sciences found that chronic stress may accelerate the aging of the immune system.

Researchers found an association between higher levels of social stress and lower levels of T-cells, an important part of the immune system.

Habitual exercise, and other healthy lifestyle factors, help support a strong immune response.

pnas.org/doi/full/10.1073/p...

Dick

J1015 profile image
J1015

I have no doubt that stress contributed to developing my CLL. For years, I experienced fight or flight stress trying to raise kids, care for my parents and expand my family’s business. I could literally feel the adrenaline running through me and I have so many regrets about the occasional anger I felt about my siblings and spouse helping out. I am 67 now and am much better at handling stress and controlling internal negative feelings. Still working in my very prosperous business but can’t help but wonder if it was worth the fret.

bennevisplace profile image
bennevisplace

cancerresearchuk.org/about-... classes stress as a cancer-cause myth, based on what CRUK calls "the best studies".

There may be good studies showing that stress hormones can increase tumour expansion or reawaken dormant tumours, but that's another story.

As far as CLL and myeloma go, they both start as chromosomal copy errors in immune cells. As far as we know, a single error in a single cell is all it takes to initiate disease; cancer begins there and then. In most of us with CLL, "then" was decades before diagnosis. Can you recall how stressed you were back then, or what pesticides you were exposed to?

esn1967 profile image
esn1967

My CLL specialist at Dana Farber told me that the only proven connection to CLL was agent orange and other than that, very little is known about what causes the disease. She used the word mystery in this explanation.

I have C-PTSD from a violent childhood. I have also wondered if my internal stress could have caused the CLL. But, if that were the case, then everyone with a violent childhood (and there are billions of us survivors) would develop CLL.

jijic profile image
jijic in reply to esn1967

I believe there's also a proven connection to a particular chemical hair dye that hasn't been used in decades, but I don't remember where I read that.

esn1967 profile image
esn1967 in reply to jijic

For the record, I've never dyed my hair.

craterlake profile image
craterlake in reply to esn1967

Sorry to hear about your violent childhood .. i was also a victim of a wicked stepfather ... he had spent a year in a prisoner of war camp in north korea and was taking his revenge out on me .. fortunately i met a wonderful young woman in highschool and she helped me change my life for eternity ..we have been together for 58 years . she was the one who drove me to the cancer clinic last year for my infusions ... i am now trusting in a heavenly father so all the bad side of my early life in buried in the past .. God promises us He will help us redeem the time ..🙏 blessings , james

jijic profile image
jijic

I don't find it particularly useful (for myself) to speculate, but what I can say is that I have had a healthy diet and a healthy weight for almost my entire life (I did once gain 30 pounds in a bout of depression but lost it a year later) but did have significant stress in the 5 years leading up to my diagnosis. I also have had the Epstein-Barr virus, and I know there's also some hypotheses about a connection there (though perhaps they've been disproven? I don't keep up with that research).

craterlake profile image
craterlake in reply to jijic

yes i know what you mean .. it is not if we new what caused our CLL we could go back and reverse the process and be healed ... the research does tell us to much stress will make it harder for our bodies to heal no matter what our problem is . so it is best for us to work at relieving the stress .

CycleWonder profile image
CycleWonder

I had a lovely childhood. There were some stresses but when I look back, I see days of sunshine playing outside with my neighborhood friends.

In my young adult days, there was definitely stress. Looking back, I see mostly grey cloudy days punctuated with sunny days, and unfortunately, some dark and stormy days.

As a parent and a child of aging parents and in-laws, the stress was less amazingly enough. I suppose the joys of parenthood took precedence over the stress factors.

Now in retirement, we have adapted to the dangers of Covid and CLL by spending as much of our time outdoors having fun cycling and hiking.

The one event in my childhood that likely increased my chances of CLL was a severe case of the measles. After recovering from my month long bout, if anyone in my family or group of friends had a cold or virus, I caught it. It was quite obvious when our kids were young that I caught everything they had but my husband rarely did. My immune system never recovered very well from the measles.

AussieNeil profile image
AussieNeilAdministrator in reply to CycleWonder

Measles is a particularly insidious disease, including how it can cause a longer term impact on your immunity - just as you have described as happening to you. Unfortunately most of us are old enough to have had to survive childhood diseases which later generations were spared thanks to childhood vaccination programs. As this article concludes, science.org.au/curious/peop...

Choosing not to vaccinate against measles means denying yourself, or someone that you love, the tools to defend against a disease that can cause life-threatening complications or even death.

Sadly Andrew Wakefield's thoroughly disproven research, where he falsely claimed that childhood MMR (Measles, Mumps, Rubella) vaccinations could cause autism has caused untold damage through lost and disabled lives from these highly preventable childhood diseases via vaccination. He is still pushing his disproven theory, along with Robert Kennedy Jr, Joseph Mercola and others, who are profiting through the fear they instill in parents who are simply trying to do the best for their children. Many more lives were unnecessary lost in the pandemic due to vaccination hesitancy. Vaccinations aren't without risk, but when your body can recognise and block infections, preventing them from infecting you and then, for some viruses like varicella (chicken pox, shingles) and the herpes family, remaining latent in your body, you prevent things like cancer, permanent nerve damage and perhaps chronic fatigue from happening.

As this CDC article notes,

"After you get an EBV infection, the virus becomes latent (inactive) in your body. In some cases, the virus may reactivate. This does not always cause symptoms, but people with weakened immune systems are more likely to develop symptoms if EBV reactivates." cdc.gov/epstein-barr/about-...

Neil

CycleWonder profile image
CycleWonder in reply to AussieNeil

Yes. This was back in the mid 50’s when the “best” treatment for measles, mumps, rubella, and chicken pox was to get it early. I was intentionally exposed to the measles.

SeymourB profile image
SeymourB

craterlake -

I cannot see stress as a direct cause for cancer. There would need to be something about stress that leads to a mutation and prevents the repair of the mutation - neither of which directly involve the immune system.

But indirectly, DNA viruses can cause some types of cancer, and a suppressed immune function can allow viruses to either infect or re-activate, in the case of herpes viruses. But so far, the dots have not all been connected for CLL.

Here's a recent article that summarizes some of the other lymphomas that are caused by one herpes virus - EBV (Epstein Barr Virus):

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

Deletion of Viral microRNAs in the Oncogenesis of Epstein–Barr Virus-Associated Lymphoma

Front Microbiol. 2021; 12: 667968.

=seymour=

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