Benzene : Have MPN ppl here been exposed to... - MPN Voice

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Benzene

ERei profile image
ERei
26 Replies

Have MPN ppl here been exposed to benzene?I recently read it can be detrimental to the bone marrow. As a child if I got paint on my hands we would clean it off with pure benzene. I'm wondering if that is why I have PV and my sister has lymphoma.

My MPN doc says no - the amount would not have been enough

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ERei
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26 Replies
Otterfield profile image
Otterfield

It's impossible to know what has caused a particular blood cancer. Apparently some research has suggested that benzene could be a culprit but we will never know in any individual case. All we can do is start from where we are and live our healthiest lives.

ERei profile image
ERei in reply to Otterfield

This information could help prevent others from getting an MPN

Otterfield profile image
Otterfield in reply to ERei

But in general, people on here already have an MPN. The dangers of benzene are better known than they used to be, which is good.

JediReject profile image
JediReject

Hello ERei, , I guess the answer is somewhere in the ether , , , may well of been a contributory factor or trigger in some cases but proving such is nigh on impossible. I was a painter and like many of the profession struck down with blood cancer. I used all types of product containing Benzene / Toulene over a number of years and I think it's more than a coincidence that I was diagnosed with Primary Myelofibrosis age 45.

I always joked that it could of been worse I could of stepped back off my 30 foot ladder to admire my work . . . But in reality it wasn't.

There doesn't appear to be any meaningful research in this area regarding exposure, timescales of same and potential risk of exposure ie if one has the Jak 2 gene does the chemical act as a trigger. . I've always thought so in my case.

Regards - Chris

ERei profile image
ERei in reply to JediReject

Many painters have blood cancer? That's significant. Researchers should do a study of that

JediReject profile image
JediReject in reply to ERei

I used to research as much as I could and picked that fact up on one of the many studies , papers I read possibly connected with drug trialling where they gathered information on participants past , current employment. I've always thought it would be useful to do this kind of thing across the board as a standard to highlight any commonality in high risk exposure and educate. It needs coordinating but ought to be doable.

Nikon7ii profile image
Nikon7ii in reply to JediReject

Interesting to read of your experience. I also did a lot of indoor painting on 3 properties and slept in a room where the carpenter used a toluene-based adhesive to put up bead board. A friend with ET pumped gas as a job when she was young. I believe all exposures are accumulative and some of us "fill up" faster than others. I've had follicular lymphoma and now PV.

MWxxxx profile image
MWxxxx

I smoked for 20 years and had household members who smoked right through my childhood. As a child we lived in houses with real and calor gas fires and cooked on a rayburn. I was diagnosed with PV in my 40's and had probably had it since my 30's and I feel it was caused by smoking. To be honest, and perhaps strangely, that brings me some solace. I brought it on myself and have to live with the consequences. If I found out smoking wasnt the cause in my case I think I would be forever asking "why me?"

I understand you wanting to find answers whether its to give you peace or just try and understand it all but as others have said, no one can know for sure. Benzene may well be a cause but it won't be the cause in everyone. There will be many people who have had high long term exposure who never get a blood cancer and those with little or no exposure who do.

Thinking back, as well as smoking, when I was a child my dad used to get me sanding and painting lead paint (he always said try not to breathe it in - ha ha), creosoting fences, as well as mixing dry cement without a mask. WhenI was a baby and he was renovating our house he used and sanded asbestos in the house! Not to mention I lived all my life near busy main roads. It's a wonder I am still alive!

April-May profile image
April-May

I believe Benzine definitely contributed to a lot of cancers. We lived in London when there was smog and air pollution from coal fires - and traffic fumes which are still a hazard in modern cities. Also asbestos was used in most buildings. My brother has lymphoma so it makes sense but we cannot let that affect our will to heal can we… staying positive definitely helps.

dbus1417 profile image
dbus1417

I work in the petrochemical industry and had frequent exposure to toluene with ppm levels of benzene in it. This was over a period of roughly 10 years before diagnosis of ET - CALR at 38.

Andrew8 profile image
Andrew8

When I was diagnosed with ET in 2016, my haematologist asked me for my work history, and I told him I had worked in the motor trade all my life, including as a child in the family business, obviously being exposed to fuels, oils and paints. He said he would be 90% sure that Benzene in those products were the reason I had mutated bone marrow and hence ET / MF. He related a story of a worker in a factory spilling some Benzene on a chair which he wiped off, but sat on to have his lunch, he died three days later.

The scary thing is that Benzene compounds are used in cosmetics and food including Organic, which some research say are unstable, but are claimed by manufacturers to be at a safe level. Well they would say that wouldn't they. Look for the letters Benz..... in the ingredients. Why do we have so many cases of childhood cancers. Asbestos and smoking were supposed to be safe.

ERei profile image
ERei in reply to Andrew8

Thanks for your helpful response

Whitegate profile image
Whitegate

Aberdeen University is doing research into MPV causes. The scope and depth is without equal.

ERei profile image
ERei in reply to Whitegate

Good to know. Hope they are checking out benzine as a possibility

Mazcd profile image
MazcdPartnerMPNVoice in reply to Whitegate

hi Whitegate, this is the MOSAICC study (MyelOproliferative neoplasmS: An In-depth Case-Control) is a UK-wide study that aims to identify what causes myeloproliferative neoplasms (MPNs) and the best way to improve patients’ quality of life and is led by Dr Lesley Anderson, Aberdeen University. There are currently 19 research sites in the UK (5 in Northern Ireland, 2 in Scotland, 1 in Wales and 11 in England, plus 1 in Cork, Ireland and 4 more planned sites for 2023.

More information about MOSAICC can be found here on our website mpnvoice.org.uk/about-mpns/...

including links to published papers with results from the pilot study.

The MOSAICC epidemiology study is supported by MPN Voice.

You can also hear Prof Anderson talking about the MOSAICC study in one of our vlogcasts, more details can be found here healthunlocked.com/mpnvoice...

Regards, Maz

I was an instructor at the Fire Service College for 3 years of my career in the fire service. Some of the training scenarios included the burning of petroleum and we were regularly covered in unburnt product and was committed over and over into the thick black smoke without breathing apparatus.

Prof Harrison told me that this could be the cause of my ET although a toxicologist stated such a link could not be made to ET. He did state however that if my ET changed to AML then there is a link

ritaandscooter1 profile image
ritaandscooter1

The first thing my MPN specialist asked me is what chemicals I've been exposed to. Initially I couldn't recall any chemical through my work that contributed. Then I met a lady who's husband grew up in my neighborhood and is the same age as me. He has Parkison's and she said many others in my age group who lived in the area have diseases and cancers from the on-going DDT spraying back in the 60's.

I lived in rural Anchorage Alaska and they sprayed by air & truck to kill the mosquitos. We played in the outdoors everyday for hours, eating the berries and playing in the forest. I remember kids running after the truck that sprayed it because it was a huge plume like a cloud. They thought it was fun to play in!! One sister has a thyroid condition, brother had the rarest of testicular cancer, other sister just had breast cancer and then me with PV. I was diagnosed around age 43 but already had it in my later 30's. Probably JAK2 gene already there and stress/ DDT exposure activated the gene. Who knows...........Just have to go forward with a positive mind set and pray someday for a cure. Best to all.....Kerry

wateron profile image
wateron

digital.olivesoftware.com/o...

ERei profile image
ERei in reply to wateron

Wow! I knew that gas stoves were bad for your health but didn't know about the benzene. Thanks for sharing!

wateron profile image
wateron in reply to ERei

I think about all the years I have had a gas stove & what it could be doing to my body. Expensive to replace it but am considering it.

MAP44 profile image
MAP44

Worked in a kitchen of some sort since 14yrs old. Mostly gas appliances, grills, etc. Never made the connection until i joined an on line MPN conference from the UK. 3 parts of it, exposure and some genetics and life in general and out comes a disease, but I am fighting it. 🤼‍♂️

Barbiebreath profile image
Barbiebreath

Yes, My Mom worked at Camp Lejeune when she was pregnant with me. I believe benzene was in the water. My MPN shared with me that there is a likelihood that this mutation begins in utero but was quick to add… they really don’t know.

Pte82 profile image
Pte82

It was established in 1938 that benzene and toluene cause myelofibrosis.

ERei profile image
ERei in reply to Pte82

Where did you get that information?

Pte82 profile image
Pte82

toxictorts.com/benzene-myel...

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