Any thoughts on how we have contacted this disease..

[mfc86]

Hello everyone...

New to this group, only diagnosed Jan 2020 , still on watch and wait ..

Does anyone have any thoughts on how we have contacted this disease .

I have worked in the food manufacturing industry for 20 years and it has just come to light that some of the flavourings are carcegenic .

My consultant thinks this could be connected but my employers are so far slightly dismissive.

All early days for me and the most important thing for me is to stay well but just a bit curious if anyone else has similar experience.

Thanks MFC86

[Cammie]

There are many theories and conspiracies going around about the causes of cll.

Nothing has been proven and unless research is done on a wide scale this will continue.

Some medical research based upon the changes in cells when cll is present puts forward the theories that the changes may be due to a virus that the host patient suffered from which changed the cell structures. Others who were subject to Agent Orange or carbon based carcinogenic agents or insecticide etc.

I can understand your employers negative responses because the science is not able to prove any connection. But also because this would open a massive can of worms for compensation claims throughout the supply chains in many industries.

No employer is going to admit to such responsibility nor are the manufacturers of the agents. If science can not supply a definitive connection the theories and conspiracies will continue.

[Hidden in reply to Cammie]

I've (as I've mentioned before) had artificial grass in my courtyard for years...... A few years ago, I read an article (I can't remember where) connecting leukemia with artificial grass/AstroTurf...... Even if were the case, would big business tell us? Of course not...

[mfc86 in reply to Hidden]

Thanks for your reply's ....fully understand my employers stance , just thought I would put the question out there and gauge other people's opinions.

Long road ahead but I certainly know PPE and working conditions now are very different to what they were , twenty years ago , this sadly doesn't make it right .

Proving it will clearly be virtually impossible and I know the main thing is we all try and keep well .

Cheers .

[Hidden in reply to mfc86]

People see us walking around, working, carrying on as usual... I believe they think that, unless you are having chemotherapy, or you are on your deathbed, then you can't really have cancer.... Unless you are very visibly ill, you must be ok.....

It's a strange cancer, and it's hard for people to get their heads around it... But, that's just my take on it.... That's one of the reasons I've kept it quiet from most of my family and friends since being diagnosed with CLL in 2014...

[LovelyLilyGirl in reply to Hidden]

Mine is hereditary. My dad had cll and a cousin on dad’s side had lymphoma. Luck ( or bad luck) of our genes.

[country76 in reply to Hidden]

I have kept it quiet from most friends and family too. I found in the beginning that people treat you different when they hear about it.

I read an article years ago that they were thinking of not calling Cll cancer. I haven't heard anything since.

I have been exposed to so much in my life time it could be anything.

[Hidden in reply to country76]

Best thing I ever did, keeping it quiet.... My dear old dad died (93 yo) without knowing I had CLL..... It also takes the pressure off, gives me time to breathe..... When the times comes, I may have to come clean..... Until then, I'll keep quiet.

You can't 'untell' people....once you've opened Pandoras box... there's no going back...

[country76 in reply to Hidden]

Boy that's the truth. My mom died at 96 without knowing. It's better that way, she had enough to worry about. I did tell my sister.

[Hidden in reply to country76]

One of my sisters knows..... She never mentions my CLL.... Which I really love....

[GMa27]

Mine is hereditary. My Dad, his twin and their mother had it. 💕

[Sushibruno]

When I asked Dr. Lamanna how I got this she didn't have an answer. The only thing she said was "bad luck" and that's because they don't know the answer to this.

[delseyn]

CLL is familial in Ashkenazic Jews, which is what my paternal great-grandmother was.

[Hidden]

Luck of the draw.

[wellbeingwarrior]

Cause is as yet unknown but familial links are there for a small %. My father had it.

[Tpdnotts]

My husband has CLL and his father has it.

[Big_Dee]

Hello mfc86

At this point we don't have a clue as to what causes CLL other than it is due to DNA damage. There are many more natural carcinogenic materials around than man made carcinogenic items. It is analysis by statistical review. Say 5 people at your plant have some form of cancer, hah-hah. Now try to figure out what they all have in common, which is not the same as a direct link. One out of three people in the US will have some type of cancer in their live time. It would be so nice if we could find out what causes cancer, then we could just stop doing what ever it is. I should have also added that everyone with CLL has wondered why me. Blessings.

[Jjcrepeau]

When I was first diagnosed, I was also trying to find the cause as it does not run in my family. Then I got to the point where I realized that it doesn't really matter. I have it and just have to move on from there. Better to spend the energy on other things. 😊

[81ue]

Cancer Fairy made an untimely visit to me too, and with the wave of a wand people would say I'm a 'hero', 'inspiration', 'warrior', 'fighter', 'brave', and that i 'look good'. I'd rather just blend in, . . . oh, hey, I do blend in now, everyone wears a mask. Cancer Fairy's wand works in disastrous ways.

[81ue]

You have no choice, you're a hero, you're an inspiration, o brave warrior-fighter! You know, you look good!

[Miller1960 in reply to 81ue]

I don't always feel brave but I do and like to feel like a warrior and I do like to feel brave.When people that know I have cll tell me I look great, I embrace it. Mind you it's been almost 6 years since diagnosis. Things take time.I feel less vulnerable than I used to. I've lived an extremely healthy lifestyle and was very angry when first diagnosed and tried to figure it out, we'll never really know.

[Anilbhard]

I have asked this question repeatedly to my Oncologists, but none could give firm reply , but general opinion is that 1) main cause is genetic and 2) if one worked in manufacture Pesticides or Chlorine containing products —eg I was manufacturing PVC compound and also bottles; so it could have been the reason.