what provoked my CLL?: Educating myself about... - CLL Support

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what provoked my CLL?

Yalokin profile image
122 Replies

Educating myself about CLL, I read that prolonged stimulation of the immune system in combination with genetic mutations and / or predisposition leads to CLL.

I see myself as the ideal candidate for this disease.

In a study about 10 years ago, it was found that one of the little proven risk factors for CLL is an increased body mass index (more than 35) with a factor of 1.3.

Exactly 2 years ago I started gaining weight more than normal for me. I gained 12 kg in 1.5 years.

Separately, my CRP has been moving above the norm for about 4-5 years (and now it is still 7 with an upper limit of 5). My HSCRP is also high.

Separately, fats secrete growth factors that provoke and / or stimulate cancer.

On the other hand, my hard work, associated with very frequent business trips (about 450,000 km in 12 years), leading to permanent fatigue hinders my healthy movement, which in turn led to weight gain.

Do you feel the wheel to hell?

What do you think?

Are we all overweight in this forum, do we all breathe organic solvents?

What do you think about stress, is there a connection?

Many people give me advice not to "dig" into the past. That is, "what happened" happened. Especially doctors.

But we are thinking people, others need to learn from our mistakes (if there are any).

By this logic, we should not read history, because it has "passed" already.

In the room in the clinic where I was, there was a man who had been in treatment for 4 years and did not know his diagnosis. "I have something on my blood."

I am not one of those "blessed" people.

May God give them health.

What do you think?

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Yalokin profile image
Yalokin
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122 Replies
Poodle2 profile image
Poodle2

Hi Yalokin, I was diagnosed at 39. I have always eaten very healthy, I would say. I always exercised and kept active. I am not overweight. I never smoked and in the past 9 years I hardly ever drank any alcohol ...and I still ended up with CLL. You will never find out what's caused your disease in my humble opinion but I think it's natural to try to seek answers.

Yalokin profile image
Yalokin in reply to Poodle2

Hi, Poodle2.

And what about your stress levels?

Sometimes we think that everything will be ok, but we throw some limits by systematically overloading ourselves.

"Systemic" is probably the keyword. The other keyword may be "extreme".

Do you have observations of whether you are genetically predisposed by your ancestors?

By the way, I, like you, have consumed a lot of fruits and vegetables, but I have been immobilized lately.

Another reason I've read is the presence of autoimmune disease, lupus, Hashimoto's thyroid and so on.

As I like to say from time to time, "The treasure sometimes stands before us, but we do not have the strength to see it."

Take care, with health.

Poodle2 profile image
Poodle2 in reply to Yalokin

No history of blood cancer in the family. As for stress levels - I'm about as stressed as everyone else, work, kids, ... nothing out of the norm I would say.

Even if I knew what had caused my CLL - what difference would that make? I have it now and whatever happened in the past, happened in the past...so to me it's not important to know as it would not change my current "status" but we are all different so I appreciate you trying to figure it out.

Yalokin profile image
Yalokin in reply to Poodle2

You are right that we humans are different (and thank God).

I do it out of professional distortion. Discovering the cause of an event is a pleasure for me. And the harder it was, the greater the pleasure.

But I am stubborn.

In order for the cancerous transformation to take place, in addition to the absence of a tumor suppressor gene, an "initiating" event is needed.

It's like the lock in the bank vault - to unlock it you need both (at least) keys at the same time.

In the past, scientists easily called it a "random mutation."

Now it is increasingly clear that there is nothing accidental. Rather, we still do not know many things.

The theory of viral origin comes to the fore.

Of course, I speak as an absolute layman. But in principle, more or less I think I'm right.

And of course you are right that nothing will change for us.

But we have children.

We need to give them a package of knowledge at least for diagnostic purposes, if prevention is not possible.

And to be useful by at least 0.1% of everyone else.

I am absolutely sure that others like me have asked themselves this question in this discussion.

I am certain.

Best regards!

🏇

Sushibruno profile image
Sushibruno in reply to Yalokin

When I asked my specialist what caused my cll the answer...." bad luck" she didn't have a definite answer because they don't know what causes it.

lindalou5 profile image
lindalou5 in reply to Yalokin

You hit on my reason for the 'why' and 'how'. My children and grandchildren. We know that it is in our genes as it has come down for three generations now-that we know of. But like you, I also wonder at the cause so that if there is anything to be done to keep them safe from CLL, it would be nice. I have five siblings-three sisters and two brothers. I wonder why I got it and they did not. The boys, in their 60's had encapsulated cancerous kidney tumors. This, and the CLL, as well as the females getting breast cancers, are the fun of our particular family.

Yalokin profile image
Yalokin in reply to lindalou5

lindalou5, you don't have to wonder why you do and your brothers don't.

Genes are a very complex cocktail and each of these cocktails is different (that's why we are different).

You are genetically burdened by your parents and fall into the group with about 10% inheritance in the direct line.

Otherwise, in your brothers, kidney cancer has a proven "affinity" for testosterone and therefore occurs about 4 times more often in men. Thank God they are encapsulated. I know a man who has been battling kidney cancer for 4 years and I can to say not very successfully. I hope it's okay.

You are ahead of me with the knowledge of CLL and I wish you most sincerely to go in the right direction (undetectable disease).

LeoPa profile image
LeoPa in reply to Yalokin

If you want to know about cancer, read this:

en.m.wikipedia.org/wiki/The...

By the time you finish reading you will find out that there is no one single cause. It is always a confluence of many happenstances.

You can keep looking but you will never find out what exactly caused your CLL.

G1llHa1n profile image
G1llHa1n in reply to Yalokin

Some years back there was a lot of discussion on this site about the influence of high stress, especially long term, on people who had developed CLL. Many at that time thought it could be a contributory factor - but no way to prove it one way or the other.

Yalokin profile image
Yalokin in reply to G1llHa1n

Yep, stress makes everything worse ...

G1llHa1n profile image
G1llHa1n in reply to Yalokin

Agreed!

Lesley3 profile image
Lesley3 in reply to Yalokin

Hi, my husband is the most laid back person I know but still has CLL.

Sushibruno profile image
Sushibruno in reply to G1llHa1n

Most people go through alt of stress and they don't develop cll.

G1llHa1n profile image
G1llHa1n in reply to Sushibruno

True - but what else is in the mix for various people?

Sushibruno profile image
Sushibruno in reply to Yalokin

This is just a guess but I always suspected my lupus might have caused this dreaded disease.

Yalokin profile image
Yalokin in reply to Sushibruno

It is very likely. There are such findings in the literature.

Greetings!

Ashwas profile image
Ashwas in reply to Yalokin

I am with CLL for the past 19 years.Just one year before I was diagnosed with CLL, I took weight reduction pills. I still has a feeling that the pills would have triggered my bone marrow

J1015 profile image
J1015 in reply to Poodle2

When diagnosed,I was in the best shape of my life. I was training for a half marathon and working out daily. I have always eaten healthy and was never sick. (I am still never sick.) BUT for several years prior to my diagnosis, I was a wad of stress. My husband and I were growing our mail order business, I was raising two kids (husband was always at work) , and tending to a mother with dementia and an aging father. I felt like I was on an adrenaline rush all day. I cannot help but think that that opened the door to let my bad cells thrive.

Yalokin profile image
Yalokin in reply to J1015

And I took my mother to chemotherapy every Friday for 1 year. And my wife and I watched her at home almost to the last. In the end, she almost couldn't stand it. 6 months after she died, my indicators started to rise.

And the next year floods, large financial losses, 3 attacks of thieves in my house - all unsuccessful (I led the defense). Arguments with ordinary people (we have a lot of them).

Before that Covid-19, then the 1st vaccine, after 30 days we got over it slightly and there is no end ...

craterlake profile image
craterlake in reply to Yalokin

Good morning Yalokin , i appreciate your thoughtful questioning and your responses .. i am now 73 years old living in usa and taking calquence for the past 6 months ...i also thought i had been taking good care of my health for the past 30 years........ i have been a vegan vegetarian . with moderate exercise , perfect weight to height ratio ... i am a semi-retired electrical contractor and at times it was a very stressful and sometimes dangerous occupation .... No health issues except CLL ... trusting in God for His will to be done in my life and yet here i am with Leukemia ... i have the book titled the "N of One "written by Glen Sabin . he is one of the very few who have been cured of CLL by using natural remedies . he was only 28 when first diagnosed . after several years of taking extra good care of himself and using herbs he was in total remission . then he went through a very stressful time in his life and the CLL came back ... He increased his herbs and completely reduced his stress level and his CLL went into total remission . they did a bone marrow biopsy and could find NO cancer .So i am convince that the stress has a lot to do with it . it could be emotional stress or physical stress , like running marathons , way over the top for the body to deal with ... they say the genes load the gun but lifestyle pulls the trigger .. finding out that i had CLL caused me to have major stress , on top of that i was severely anemic ... i have a lot of people praying for me and my wife .. we have done missionary work in other countries but not since covid and my diagnosis . we also have a christian radio station which i hope to keep stay involved in now that i am almost normal again . we are looking forward to the summer weather when i can swim everyday in our pool ... one thing is for sure is that we are all different in our genes so what triggers Leukemia in one person will not be the same in another but to much stress of any kind needs to be considered for all of us. Keep looking up and moving forward some day God will give all that are trusting in Him a new body . blessings , james John 16:33

😀

Yalokin profile image
Yalokin in reply to craterlake

God, craterlake. So much power in your words. You seem to be a pious man.

We are really different people and there is no other like you or me.

One thing I want to tell you. It could have been worse.

There are also much more serious diseases.

I never forget that thought!

May God give salvation to all.

We are not a knife to change our destiny. We can only help others not to make our mistakes.

And most importantly - to set an example with the good that we carry in our souls.

I hope you keep your strength and move forward boldly and we will write again in at least 10 years.

🙏

craterlake profile image
craterlake in reply to Yalokin

Amen and Amen !!!

😀🙏

J1015 profile image
J1015 in reply to Yalokin

I totally get it!

Ghounds profile image
Ghounds

Always been underweight for my height so that wasn't what caused it for me.

Stress on the other hand .....maybe.

Yalokin profile image
Yalokin in reply to Ghounds

ah, this stress ...

Pin57 profile image
Pin57

In the year n half been in this forum there’s been a few posts on the how or why did I get CLL? and many previous posts. Lots of speculations how or why, but I think in summary most, if not all, are inconclusive. An Admin will correct me if I’m wrong on that point.

For me with CLL (and my wife’s cancer condition) and us living very near (and I briefly working at) the plutonium trigger nuclear bomb factory, leads me to believe that may have been the cause of our cancers. An environmental reason.

We are both lean built, still climb a few mountains when we can… so no overweight correlation, nor family history correlations of CLL, or other cancers. As for stress, my job was a high level stress one. But I’m sure many others have lived life with way more stress than my job.

But back to the living close to (and working at it for a few years during its demo/cleanup phase, finally!… a good cause that cleanup was)… the fact our entire neighborhood street of retirees all have cancer … could be from that nuclear bomb making plant even though the plant had shutdown production just prior to moving into the neighborhood.

But we are moving onwards, can’t undo the past or cancer dx. So living life best we can. There are mountains out there yet to climb! 😀

Yalokin profile image
Yalokin in reply to Pin57

I have read that radiation rather leads to CML.

At the clinic, when I was there, I met a 63-year-old man. He was a miner in uranium mines (we used to have them).

He said he was the last survivor of the mine (!!!).

Otherwise, I remember that about 30 years ago I was on the territory of our nuclear power plant and I remember that I was very tired all day.

And at the entrance to the plant, the indicator showed normal radiation.

Does anyone know?

Greetings!

Pin57 profile image
Pin57 in reply to Yalokin

Well now that you mention uranium mine … I hiked (off-trail) about 20 years ago with a group of engineers from work along the South Rim of the Grand Canyon to one of the worlds richest uranium mine glory hole (long abandon) to see what it would take to cleanup and seal the massive glory hole.

On the way back we stopped and toured the top of Orphan mine, the shaft header area and to measure the uranium tailing piles. I later did a cost estimate to cleanup the entire uranium mine area. Surprisingly the mine is not far away from the famous South Rim Lodge where thousands of tourists go.

We wore anti-radiation protective gear n had monitoring devices, etc. It is one nasty and costly cleanup area.

Guess chalk that work effort as another “possible link” to my CLL, although it was long ago.

Sushibruno profile image
Sushibruno in reply to Pin57

I used to be a housekeeping supervisor at a hospital working overnight. Most of the time we were short on workers so I had to fill in working with cleaning supplies like bleach and other harmful cleaning chemicals. Then I went home and did the same thing to clean my home. I always thought why didn't I wear a mask. Too late now.

Poodle2 profile image
Poodle2 in reply to Sushibruno

This is why I don't like to think about what had caused me to develop CLL.

It's not your fault you have it, don't blame yourself for your past decisions, don't think what if...

There is nothing YOU could have done to prevent this happening to you. It is NOT your fault.

❤❤❤

Sushibruno profile image
Sushibruno in reply to Poodle2

Yes I agree, Poodle2 thank you.

Yalokin profile image
Yalokin in reply to Poodle2

You are really right, there is no dispute.

At first, however, one instinctively asks the question "where did I go wrong."

After reading a little about the disease, he realizes that there are not many proven proven causes and therefore there is no recommended prevention.

Since I was personally diagnosed with cancer for the third time (the first 2 times, thank God, they didn't prove themselves), I admit I asked myself the question "God, I haven't done anything to anyone. Why are you punishing me so cruelly?".

Probably others have asked similar questions.

In this difficult time, people react differently because we are different.

These are intimate things. Not everyone is willing to share them.

I do not worry.

Of course, life goes on and, God forbid, longer.

🔆

unairdefamille profile image
unairdefamille in reply to Yalokin

Hello Yalokin, I don't believe that CLL is a punishment. However, it can test our endurance, courage, and resilience. It can also be, as some of my friends with cancer say, a blessing in disguise. What is essential is to ask the question, if we must, and then let it go. Some say, we all have the answers inside of us - we know. Our body knows. If an answer is beneficial for us, It will come at the right time. Meanwhile, let us LIVE since we are still given that chance. Live and love that life for the joys and the challenges that often help us grow in compassion, gratitude, and grace. BTW I also asked myself that question. I lost my first husband when I was 49, I lost an 8-year-old beautiful son to a stupid accident when I was 33. I was in perfect health up to my diagnosis, 8 years ago. No CLL in my family as far as I know. Best wishes to you and to everyone on your journey. 💖🧚‍♀️🙏🏼

Pin57 profile image
Pin57 in reply to Sushibruno

Yeah agree with Poodle’s reply, n besides what is done is done.

Time to move onwards and live our lives best we can and …. make sure we laugh often !

Sushibruno profile image
Sushibruno in reply to Pin57

🙂🙃

Pin57 profile image
Pin57 in reply to Sushibruno

What does your CLL do on your birthday?…

They cell-ebrate!

Sushibruno profile image
Sushibruno in reply to Pin57

🤣🤣🤣🤣🤣thanks for the laugh.

JLJC profile image
JLJC in reply to Pin57

🤣🤣

unairdefamille profile image
unairdefamille in reply to Pin57

🤣 HUMOR IS STILL THE MOST POWERFUL MEDICINE 🤣

mickimauser11 profile image
mickimauser11

Bacterial infection dating back up to 20 years viral factors and a familial dispositin

This is a slide from the German CLL study group saying that it is caused by a bacterial i
Yalokin profile image
Yalokin in reply to mickimauser11

👍

unairdefamille profile image
unairdefamille in reply to Yalokin

Interesting!!!!!!!

Research123 profile image
Research123

10 years before diagnosis, I started a period of incredible stress - divorce, going bust, years of court issues. and financial hardship. Then I relaxed a bit, put on 10 kilos which meant I went from underweight to overweight over 4 years. Then I got diagnosed. I don't think we will ever get the answer but being down depresses your immune system, as does overweight and stress. Perhaps the combination created the ideal circumstances for it to happen - or maybe it would have happened anyway

Titian72 profile image
Titian72

I have always eaten well and been fit through martial arts. Very good health in general until nearly dying of Covid in 2020. Diagnosed with CLL at age 48 later that year. Before seeing my CLL specialist I was absolutely convinced that Covid 'provoked' my CLL. Now I think it might have been 12 years of persistent high levels of stress from emotional abuse in a terrible marriage. I have blood tests every few months and the times when my WBC shoot up are always when I have to have contact with my ex, after which they seem to come back down (although on a steady upwards direction over time). I am still fit and well (on W&W) so for my CLL, I can't think of any links apart from stress. So in my mind, those clichés such as: 'stress causes cancer' and 'toxic relationships', are all true!

Pageboy profile image
Pageboy

Diagnosed at 45, not overweight, exercise, eat well, almost lifelong vegetarian, not worked with any toxins but many years with broadcast equipment. Stress? Of course. In my mind a strong bout triggered my CLL. But it probably didn’t. Many people have a whole lot more stress than me and don’t get CLL. No one really knows why CLL or ALL happens. My feeling is that it has a strong genetic or dna link. Being overweight isn’t ideal for any cancer, we are told, so it never hurts to stay within a healthy range.

Bichi profile image
Bichi

Hi, I understand some herbicides may be the cause for CLL. I come from a large family with no cancer history. I also served in Vietnam in the mid 60s and was exposed in many occasions to Agent Orange, a cancer causing agent known to affect the Type B white blood cells. I am inclined towards AO as main cause for my CLL journey. Just a thought!Ed

Yalokin profile image
Yalokin in reply to Bichi

Your case is officially recognized. Aren't you entitled to compensation?

Check your case. Greetings!

Agfar profile image
Agfar

Putting your CLL diagnosis to the back of your mind is a hard thing but it can be done. I find doing some Photoshop or similar a good thing to do as I really have to concentrate on that and nothing else. On the day I was first told of my CLL the doctor told me "to go and live my life and he/they would take care of the blood numbers". That was in 2009. Don't keep looking on the internet, info could be outdated anyway. Give yourself a break from thinking what might have been and enjoy today.

Sushibruno profile image
Sushibruno in reply to Agfar

Have you had any treatment?

Agfar profile image
Agfar in reply to Sushibruno

No, none at all as yet. I have a haematology appointment this week so am beginning to fidget a little wanting to hear my blood numbers but I feel similar to before so I'm hopeful I'll still be watch and wait.

Sushibruno profile image
Sushibruno in reply to Agfar

Wow wow wow that is amazing. I wish to go that long without treatment but I don't see it happening. Good luck at your appt🙂.

Agfar profile image
Agfar in reply to Sushibruno

Thanks. None of us know what the future will bring. My numbers were steadily increasing until 2018 and since then they have plateaued. My lymphocytes doubling time was more than 50 months the last time I calculated it. It's my haemoglobin that is dropping these days.

Sushibruno profile image
Sushibruno in reply to Agfar

My hemoglobin is dropping too that's what I'm concerned about hopefully they will go up for us both.

Agfar profile image
Agfar in reply to Sushibruno

Like the stock exchange, things can go up or down!

Sushibruno profile image
Sushibruno in reply to Agfar

🙂exactly!

Yalokin profile image
Yalokin in reply to Agfar

You are right.

And we are trying to do it

I quote a woman from another forum "Today is the first day of the rest of my life"

This thought is ingrained in my mind!

Greetings!

Leftwall profile image
Leftwall

Just goes to show how different we all are. I was diagnosed 2 years after going into semi-retirement, so little stress and blissfully living in the hills of Wales. I carry no weight, am still an active tree surgeon, rock climber, cyclist amongst other activities and still got hit with CLL. Fortunately, I'm extremely well looked after by my NHS team and responding well to Acalabrutinib. I have friends who are grossly obese, highly stressed, have a dreadful diet, high blood pressure and cholestoral, get absolutely no exercise and appear perfectly healthy. Given their condition, I expect (and hope!) to out live them, and they are the same age as myself (early 60s). BUT, who knows?

unairdefamille profile image
unairdefamille in reply to Leftwall

Best wishes to you, my friend. Yu sound like a powerhouse 🙏🏼🤩

Yalokin profile image
Yalokin in reply to Leftwall

I wish it to you!

dave20 profile image
dave20

I got cll when I was in my mid 50. I am not overweight, exercise regularly, drink moderately, I think my CLL was triggered by stress and both my parents has CLL and SLL.

Phillipeo profile image
Phillipeo

The war generation are in their late 80s and are as fit as a fiddle? Previous generations didn't get this modern plague of cancers now effecting one in two?, my father lived until 86, my mother is still alive and driving her car about at 86? My younger brother died of kidney cancer at 60, my wife died of CLL at 61?

It is my view that all these cancer deaths are from mostly the western diet, and maybe toxins in the air and water, but the war generation only ever ate meat once or twice a week? I think that meat and dairy food is at the heart of all these cancers, then add the high sugar intake and it's no wonder that modern man and his highly acidic body gets cancer.

Yalokin profile image
Yalokin in reply to Phillipeo

Very strong statement.👍👍👍👍

JoyfulJessica profile image
JoyfulJessica

When I was first diagnosed 4 years ago (at the age of 42), I really needed/wanted to know why. I'm at peace now realizing I'll never really know. My doctor told me it was just a fluke thing that happens sometimes.

Yalokin profile image
Yalokin in reply to JoyfulJessica

👍

Irishgreek profile image
Irishgreek

Very interesting, Yakolin. As a young man I worked my way through high school, college, and post graduate, working in a nuclear fuel processing plant, steel mills, a knive-making factory, and cleaning large office buildings with hosts of toxic chemicals. I had intense exposure for about eight years and my mom and dad were two pack a day (each) cigarette smokers for over 40 years (at home and in our restaurants). I drank from age 17 and up and then drank intensely for 20 years (at least a pint a vodka a day) after 20 years on marijuana. I thought vodka was a good substitute for no more marijuana (brilliant thinking from a highly educated man). I was one of seven children in a broken family with a depressed alcoholic father who was an orphan at age seven and who never quite recovered from the violence of his WWII service on convoy duty in the North Atlantic Oceans. He did dozens of runs to Murmansk and Archangel in Russia. Thank God for my sainted mother, a Greek woman who took charge in his frequent absences. Soooo, when I look back at all of that, my own struggles with weight, my own broken home, my alcoholism (gave up drinking 15 years ago), my own underlying anxiety and anger (subtle but always there), and then all of a sudden, CLL at age 67 (three months before CLL I had finished a 400 mile bicycle ride over seven days), I am truly at a loss to even begin to speculate on a "what if" or "cause and effect." Good luck. Just keep trying and keep moving forward. Looking back and around can often have value and just as often have no value.😀

Yalokin profile image
Yalokin in reply to Irishgreek

God, what a life you just had.

I saw your life as a movie.

How much you said with these few sentences.

I also liked the phrase "I thought vodka replaced marijuana." I laughed heartily. I liked it, man, I don't hide it.

God bless you.

😂

Big_Dee profile image
Big_Dee

Hello Yalokin

It is a rare person who is diagnosed with CLL who does not wonder about "why me". I also suspect several things like exposure to US above ground nuclear testing to getting nuclear stress test 6 months before being diagnosed. In reality it could be any number of things, I am not nor have ever had a body mass index even close to 30. I don't know why I have CLL, but I do know finding out will not help me reverse my diagnose. Blessing

Yalokin profile image
Yalokin in reply to Big_Dee

✌️

Edalv profile image
Edalv

My current BMI was always around 25, never had a weight issue. A few years before my diagnosis, I went through a very stressful period at home and at work. I think that period of chronic stress may have more to do with the diagnosis than anything else. Then with the diagnosis it made things worse. Once I learn to deal with the stress things started to improve considerably… It wasn’t easy, it is still a work in progress…

Yalokin profile image
Yalokin in reply to Edalv

Edalv, really stress destroys us. I saw that you use green tea. In a while I will raise this topic to discuss it. And I think to use. Greetings!

Newdawn profile image
NewdawnAdministrator in reply to Yalokin

I’m convinced that stress is significantly implicated in the development of my CLL. Here’s a post I did on the subject some years ago;

healthunlocked.com/cllsuppo...

Newdawn

Yalokin profile image
Yalokin in reply to Newdawn

tonight i start reading.

The interest here is great, so many good people in one place. Really amazing forum. I'm amazed.

Greetings!

Edalv profile image
Edalv in reply to Yalokin

Yalokin, yes I have been using green tea on a daily basis since the Mayo Clinic study on ECGC. I don’t do well with the green tea supplements I prefer the real thing…

Yalokin profile image
Yalokin in reply to Edalv

www-ncbi-nlm-nih-gov.transl...

This is on the topic of green tea. An interesting case.

Edalv profile image
Edalv in reply to Yalokin

Thanks for posting this article. In the article I noticed they mention the use of broccoli extract, it’s probably glucoraphanin which is found in sprouted broccoli seeds. I take a green tea that contains glucoraphanin. The name of the tea brand is Brassica Tea, they also use the name TrueBroc. Glucoraphaning was patented by John Hopkins University for it’s therapeutic properties. I figured I get the EGCG and the broccoli extract on the same cup of tea… a win-win situation…

Yalokin profile image
Yalokin in reply to Edalv

I think so.

AussieNeil profile image
AussieNeilAdministrator in reply to Yalokin

Yalokin, we've discussed this case report a few times previously. See:

healthunlocked.com/cllsuppo... The case report should never have been included in the NIH database, as it is just thinly disguised advertising for an integrative cancer center with staff who appear to have no knowledge about CLL.

Neil

Edalv profile image
Edalv in reply to Edalv

Sorry, I meant to write EGCG

mamabailey626 profile image
mamabailey626

Hi Yalokin, I was 55 when I was diagnosed with CLL and when I researched the disease the first thing on the potential list was benzene. I worked at my dad’s printing ink company and I was always around benzene, toluene, naphtha, kerosene, I was exposed to all of those chemicals. I’m convinced that is what caused my CLL. Plus my cousin who is a year older than me and was in the printing industry, he also has CLL. So in my opinion the benzene I was exposed to is why I have CLL.~Mary

Yalokin profile image
Yalokin in reply to mamabailey626

Mary, benzene and toluene are officially recognized carcinogens.

However, you probably have something genetic that connected you to your cousin. It's not just work. (My humble opinion).

Greetings!

mamabailey626 profile image
mamabailey626 in reply to Yalokin

Yalokin you could very well be right about our genetics. However my dad and my aunt had the same mother, different fathers. My grandmother died of emphysema at age 52, and my dad and 2 other half sisters also died of emphysema. But my cousins mom did die of lymphoma at the age of 52. So it might very well be genetics. My cousin also thinks that where he grew up was an area that manufactured lots of different chemical plants. But my brother who worked at the family company a longer time and much more exposure to the chemicals was fine. So who knows! My bad luck I guess. My CLL doctors thoughts were on the fence, that it could be genetics or the chemicals that we breathed for many years. ~Mary

Smakwater profile image
Smakwater

In conversation with specialists with regard to CLL and the observation presence of influence, there is a view that data which observes correlation in presence. This means that in instances where cause is not proven, a presence may be be more a passenger than to be the driver. There are many such co-related common presences, one of which is EBV.

As I understand the research dynamic at this time, there is more being learned about signaling pathways that prevent apoptosis than there is for origin of cause.

Hematologic malignancy is a very complex study, or rather a rabbit hole with multiplicitous breeding bunnies.

JM

Yalokin profile image
Yalokin in reply to Smakwater

Smakwater, yes.

My modest observations show that modern medicine is more interested in treatment than in prevention. And I have a very simple answer - money!

Money is the driving force in the western world. For better or for worse (depending on the point of view).

I read a lot about so-called CAR-T therapy.

I expect it to develop quite quickly, at a very high rate - why?

Because it is a very expensive procedure and brings a very high income!

And it is these high incomes that will be the driving force, the rocket that will launch them up.

I realized that they are already doing therapy with pre-treated cells donated from the umbilical cord and it is not necessary to give your cells to wait 2-3 weeks. That is, you pay immediately and receive immediately (a lot of money).

And when it develops and becomes widespread, it will cost less money and be available to a little more people.

In China alone, there are over 500 studies currently on this type of therapy. Why?

Because there will be a lot of money.

Because in prevention money is indirect (there is talk that we will not win, but we will save as much as you want).

In our country, in Bulgaria, the main problem is the lack of prevention.

I will not touch on this topic again. so as not to violate the rules of the forum.

With best wishes!

Smakwater profile image
Smakwater in reply to Yalokin

I cannot agree with all you say, however, I do enjoy considering your perspective and concur that money is a motivator. It is my hope that curative thinking and compassion on the part of the research community is the fuel for the effort.

Yalokin profile image
Yalokin in reply to Smakwater

🤘

Palmetto profile image
Palmetto

Yalokin some cancers are fed by hormones but I don't think CLL is one of those cancers. My husband has CLL and was only overweight for about 2 years and the majority of time was very fit and a long distance runner as well as swimmer. I feel his was a lot of stress with a very stressful job as CFO for a family owned hospital and HMO. Also I remember frequently they sprayed his office with insecticides and I used to complain that he should not sit in there to no avail. I do not allow pesticides in my home. Now my kind of cancer is provoked by hormones and fat cells have hormones to my surprise. I have always fought my weight and the last 2 years with covid restrictions I had gained over 20 pounds on my already highest recommended weight for my height although never morbidly obese and now I blame that on why I have a hormone fed cancer when I never took hormone replacement therapy, had a pregnancy and breast fed my son which were all supposed to be good markers. Luckily I had already started a strict weight loss regime before I got my diagnosis and now am down over 20 pounds. I have been a pescatarian for over 20 years not and do not eat meat or fowl but I did consume dairy which I am now trying to limit. I will not eat cheese again. I am sure none of us can pinpoint one deciding factor, but I am sure we all have factors! I am confident you will do well with CLL especially now there are so many great treatment regimens.

Yalokin profile image
Yalokin in reply to Palmetto

Hello again, Palmetto.

Yep, fats aren't as harmless as you might think.

They are actually our largest (at least for me) endocrine organ.

Because of them I have low testosterone, because they produce the enzyme aromatase, which converts my testosterone into what? -In estrogen. Estrogen, on the other hand, leads to additional accumulation of fat, which what?

produce the enzyme aroma and he ....

This circle is vicious

Most of the tumors are hormone-dependent. But here is their weakness. However, the world is quite complicated and we do not need to know why we are hungry 5 times a day or why we sleep every day.

So nature has decided. She is the greatest force (along with God, of course).

Congratulations to your husband especially!

onu1tadi2 profile image
onu1tadi2

Thank you for your honesty in questioning attitudes regarding CLL causes. You are focused essentially on the idea of prevention of disease, a concept that is too seldom addressed by the medical profession. That would require us to place a glaring light on processed foods and household products as sources of pollution and poisons breathed in and ingested, much to the disturbance of industry. And of course stress and overdoing work or exercise are most likely factors too. as you suggest. The accumulation of poisons in our system is one area I believe needs more focus. Agent orange is known to have been a cause of CLL along with other diseases. I believe the years I used chemicals early in life for work I did and subsequently, decades later, stress and sitting in my car in stand-still traffic for hours daily have been triggers for my CLL. I am appalled too at how many people simply feel illness is somehow destined. And others who wish to know nothing about their illnesses but simply do as they are told by doctors. I feel lucky that leukemia has been at the forefront of cancer research and grateful to be alive and reasonably well 4 years after my first diagnosis (at stage 4) but that does not mean I am not interested in telling my son how he might reduce his chances of getting CLL.

Yalokin profile image
Yalokin in reply to onu1tadi2

👍👍👍👍👍

bobdebob profile image
bobdebob

My CLL was brought on by the radiation from my prostate cancer treatment. At the time is was a new way of treating the cancer, now after 10 yrs they are finding out the effects. My wife is a Dr. and her reasoning is, well you got 10 good years from the prostate treatment , which would have killed you. Hopefully I can get another 10 yrs, before the CLL takes me out. I am 72 now. I was a very healthy eater, still am, I have a wheat grass juicer ,eating sprouts etc. I work construction, so very healthy and fit. My nic name is Mr. Salada as my lunches are big Salads with some protein.

Yalokin profile image
Yalokin in reply to bobdebob

Mr. Salada, hold on, you're one of the old soldiers, you've been to war once.

Greetings!

onu1tadi2 profile image
onu1tadi2 in reply to bobdebob

I hope and reasonably would expect more than 10 years. I have to say this as i was diagnosed at age 72, an now 77 and definitely aim for 90 at least. So stay positive, as that makes it much easier to defy the odds. Best of luck.

spi3 profile image
spi3

When my husband was diagnosed in January - I asked the same questions, was it his diet? And as my hubby is progressing really well in his treatments (we are under a Dana Farber Study) - I was feeding him tons of veggies; PH water, and all other stuff. His Oncologist stated there is no set diet (except to eat healthy and limit alcohol) and exercise.

Yalokin profile image
Yalokin in reply to spi3

spi3, these days I read a very large study looking at a link between lifestyle, diet and 30 other factors with CLL. .I can't find it, but when I find it I will show it to everyone .. Made in the USA.

Congratulations!

spi3 profile image
spi3 in reply to Yalokin

I hope you do find the report and thank you so much! Best of luck to you too!😋

Yalokin profile image
Yalokin in reply to spi3

I finally found it:ncbi.nlm.nih.gov/pmc/articl...

spi3 profile image
spi3 in reply to Yalokin

thank you so much! This was very insightful. I also sent a copy to my hubby's oncologist team. I really appreciate it (so now I can stop stressing over what he eats)🙃

onu1tadi2 profile image
onu1tadi2

I would like to add that for some people genetic predisposition is most likely a primary cause of CLL and other cancers, but for many the predisposition needs triggers such as stress, ingesting poisons through air, skin products and foods, and of course through years of accumulation usually. I know of no leukemia in my family or relatives. Manufacturers protect their reputation by saying the amount of chemical, through testing, in their product does not lead to cancer but they are avoiding the idea that that chemical contributes to the arsenal of poisons accumulating in our bodies from various sources. I believe that every bit of caution or avoidance in terms of bad habits or external influences helps slow progression of diseases or prevent them. Of course these are my opinions. I wish you the best possible outcomes.

Yalokin profile image
Yalokin in reply to onu1tadi2

onu1tadi2, yes yes, let's remember the lock with both keys - you need at least 2 keys placed at the same time for the thing to happen ...

I am really flattered by your wishes and I hope all is well with you.

Greetings!

Doggoneit101 profile image
Doggoneit101

I was healthier than I have ever been before I was diagnosed. I exercised at least 3 hours a day and had very little fat. I did have a ton of stress before I was diagnosed. I have often wondered if stress induced my leukemia. But I've also wondered if it may be connected to my military service overseas.

jonathan7176 profile image
jonathan7176

All speculation of course, but early in my diagnosis, one of the haematologists looking after me said that bronchiectasis is 'associated' with CLL. I have yet to establish exactly what he meant, but vulnerability to bacterial infections could have weakened my immune system (I have pseudomonas aeruginosa) and made me more vulnerable to conditions like CLL.

Another possibility - some ten years ago I inadvertently inhaled toxins over a fairly prolonged period. CLL could be the consequence.

Otherwise, I was fit and active pre-CLL - running, cycling etc. No weight issues.

Finding out what causes it could eventually be an important factor in finding a cure, so discussing it isn't a waste of time.

Yalokin profile image
Yalokin in reply to jonathan7176

jonathan7176, and I've read that they have some connection. Moreover, CLL has a tendency to develop secondary lung cancers. Not as much as skin cancer.

Do you do lung screening? What do your doctors say about this?

Good luck and good luck.

jonathan7176 profile image
jonathan7176 in reply to Yalokin

I didn't mention stress and was reminded of my omission by the numerous responses on that topic. I am quite prone to stress, so that should be added to my list of possible causative factors.

I have been referred to respiratory medicine by my haematologist on account of the bronchiectasis, so we'll see what comes of that.

bennevisplace profile image
bennevisplace

While there may be some with a family history of CLL who can claim a genetic link, they are in a small minority. I am unique among my known ancestry in having CLL. My sister in law likewise.

Most of us are ready to attribute our disease to some causative agent, environmental or other, while the specialists are saying they don't know. In my case I could say it was a period of stress due to radical life adjustment forced on me, first 15 years and then 10 years before being diagnosed (it definitely was nothing to do with being overweight, smoking, alcohol abuse or other of the usual suspects).

What I'm leading up to is that not only do we not know how we acquired the critical deletion or substitution, in some (but not all) cases in just a single gene in a single B lymphocyte, we don't know when that transformation occurred. For that one cell to have divided and accumulated to a diagnosable level could take anywhere from a couple of years to more than fifty years, depending on how "aggressive" the particular CLL is. For myself, a reverse projection of ALC through time seemed to suggest that I was born with CLL. If so, what was the cause?

Yalokin profile image
Yalokin in reply to bennevisplace

I just had lymphocytosis only. It is present in about 5% of healthy people and leads to CLL with about 1% accumulated probability per year.

I hope everything stays at this slow pace.

Greetings!

Faitheachday profile image
Faitheachday

Hello. I also have been curious as to how I developed CLL. No family history. I haven't found any definite cause but have read about being of eastern European descent. My DNA test showed that I was 41% Slovenian. But reading and seeing the diverse people on this website (which is a fantastic resource) I do not believe that is the case. My daughter told me about Epigenetics. so, I had a test done and found out about the different foods that I was consuming that were causing my body inflammation. the one item that stood out to me the most was the chemicals that are very dangerous to me. I never worked around any chemicals in my life, so my next thought was the fruits and vegetables I was consuming. although they are washed, I wondered if the chemicals they spray on foods are inside the fruit not just the outside. so, I have switch to all organic fruits and vegetables. My WBC have dropped from 135,000 to 100,000 over the past 6 months. I've also lost 25lbs. I have read that changing your diet will affect your WBC count so it could be that. hopefully I am on the right track. only time will tell. good luck with your search. I too am a person who has to know why. although I must admit that sometimes it has made me a bit crazy. Haha

Yalokin profile image
Yalokin in reply to Faitheachday

Leukocytes fall and how are the lymphocytes?

BgChiLL profile image
BgChiLL

Yalokin, you are a good conversation starter as a new member of the group. And, by the way, I flew into Sofia, Bulgaria, in 2019 for a three week hike around your country. My life has always been a healthy one... travel and hiking, eating well, regular exercise, keeping a normal weight. I was a high school health teacher! Little stress. But my CLL diagnosis came a year and a half ago. No treatment yet. But I, too wondered what in my life might have caused it. I checked all the aunts, uncles and cousins and no one had my condition. But here is my thinking. I grew up in farm country with a woods on our property and a creek running through it. I spent many hours in the summer playing in that creek. I could see the black pipe opening where our septic system dumped into the creek. And all those corn and bean fields with all the chemicals used by farmers to control pests and fungi. My father got Parkinson's disease at age 48 and he ran a farm tile drainage business. Parkinson's has been connected to exposure to pesticides and herbicides. I don't blame anyone. But I don't think the science was there yet to warn us of the effects of those farming practices.

Yalokin profile image
Yalokin in reply to BgChiLL

I think I've read about the connection between herbicides and pesticides and CLL.

I think that telomeres that are related to the prognosis for CLL are gradually shortening. There is probably some quantitative threshold that separates disease from health.

I even assume that these mutations do not accumulate in just one generation.

Greetings!

AnneHill profile image
AnneHill in reply to Yalokin

During the Vietnam war chemicals called Agent Orange were sprayed onto the undergrowth to kill it and flush out the soldiers hiding places.It caused leukaemia, cancer and other illnesses. American soldiers were also affected.

I inherited cll from my Dad but I have no idea why we got it.

Stress makes it worse. Chewing up with worry will speed things up.

DanBro1 profile image
DanBro1

Yalokin..... I also gained a lot of weight. I also traveled tens of thousands of miles annually in my job as a national corporate trainer. I also developed severe fatigue that I attributed to weight gain and getting older. Fatigue coupled with lethargy leading to inertia. All the time, unknown to me, my immune system was crashing. First, an eye infection I had treated in Los Angeles; second, skin mange I had treated in St. Louis; third, shingles I had treated in Houston; fourth, I had an appendectomy while training in Las Vegas. Since I retired, in the last 18 months, I have completed my CLL treatment regimen; I had an eye cataract removed; I've had a stent inserted in an 80% clogged artery; and a few weeks ago I had surgery to repair/replace my heart aortic valve (went in through my femoral artery into my heart) - it was heavily calcified, and they said if I didn't fix it, I would most likely be dead in 2 years. They also said that between the CLL and the bad heart valve that no amount of exercise would have helped me. NOW I FEEL GREAT!! My blood is returning to normal levels and my new heart valve has made an immediate difference in my energy level. Hope this story uplifts you! LOL :-)

Yalokin profile image
Yalokin in reply to DanBro1

Yep, your fate was not easy.

What happened to your LDH, did you repeat the test and what were the results?

Greetings!

DanBro1 profile image
DanBro1 in reply to Yalokin

My cardiologist gave me the best answer (not vague blah, blah like from my oncologist). He said, "Well, that measurement is very nonspecific, it could be anything. All your other numbers look really good, so I would worry about it".

Yalokin profile image
Yalokin in reply to DanBro1

👍

Glees profile image
Glees

My husband, had CLL and really was never curious about why he had it, but I was curious and looked into a number of different things. Two of my husband‘s cousins had CLL also and his dad had a different type of blood cancer that usually only shows up in veterans that were in contact with agent orange. One thing that all of them had in common was that they worked closely with farm chemicals and over the years they were not cautious with using safety equipment such as professionally fitted masks and gloves. My husband also had mononucleosis (Epstein-Barr virus) and I do wonder if it triggered his CLL as it did hurt his immune system and he had constant infections from that time until the time he was finally diagnosed. He was an athletic big guy but definitely not thin.

Yalokin profile image
Yalokin in reply to Glees

Glees, the Epstein-Barr virus is one of the proven causes of CLL (and more).

The other foot-and-mouth disease that you have mentioned is frequent contact with herbicides and fungicides.

Once again, I am so sorry for your loss.

And this photo and your story ...

I was silent for a while ...

Be strong, you have so many children around you.

They stay behind us.

Condolences once again.

AussieNeil profile image
AussieNeilAdministrator in reply to Yalokin

The Epstein-Barr virus does not cause leukemia, but scientists are investigating whether it plays a part in how the disease progresses.

(Last reviewed October 2021)

medicalnewstoday.com/articl...

Summary

The EBV is an extremely commonTrusted Source virus. After the initial infection, it typicallyTrusted Source remains latent in the body. Researchers are still working to establish whether it plays a role in CLL.

So far, evidence suggests that high levels of the EBV may predict the speed at which the disease progresses. Findings such as this may help doctors identify people who are likely to need treatment sooner than others with CLL.

Yalokin profile image
Yalokin in reply to AussieNeil

Correct!

Rather, with the development of CLL. There is still no proven connection, although it is not excluded 100% so far.

also here:

www-ncbi-nlm-nih-gov.transl...

Palmetto profile image
Palmetto

I wonder too if an autoimmune gene for vitiligo may also figure in with CLL as it is hereditary as two of my husbands three sons one from first marriage and our one have the same issue. Wonder if anyone else on this site has same or in their family. You have certainly become beloved here in your short time. ✨

Yalokin profile image
Yalokin in reply to Palmetto

I read that it has to do with autoimmune diseases.

Unfortunately, I've been reading so much lately that I haven't saved most of my posts.

It is appropriate to give references to the publications.

I have special concerns about autoimmune diseases because my daughter has a mild form of Hashimoto's thyroid, which is an autoimmune disease. She also has a cold allergy.

This type of disease constantly keeps the immune system on the alert, and this, combined with some other factors, can lead to immune system disease (such as CLL).

Another issue is that I do not know what we can do to prevent it.

This remains an open question for me.

Greetings!

Astro617 profile image
Astro617

I am not overweight now but was about 35 pounds overweight when I was diagnosed. There is no family history of CLL. I think it's possible that a number of factors played into my diagnosis. Poor diet, environmental toxins (herbicides) and a major stressful event. I'll never know, but I really do hope it doesn't run in my family. I'd like to think I haven't passed it on to my kids.

Yalokin profile image
Yalokin in reply to Astro617

🙏🙏🙏👍

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