Why do we all have these bone marrow mutations? It cannot all be due to family DNA bad luck.
My haemo told me that he is certain that my mutation is due to exposure to Benzene in petroleum products. In effect I have been poisoned by products which were supposed to be safe.
Benzene compounds are still widely used, not only in fuels, paints etc, but also as preservatives in food, such as Sodium Benzoate,even in organic products.
It may be too late for oldies like me, but what about today's babies and children ?
And what about pesticides which are basically poisons, on food crops. The UK government has just allowed pesticides which were banned in the EU, to be used on sugar beet crops.
It all very well researching drugs to control these mutations, but a waste of time, if they are not stopped from happening in the first place.
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Andrew8
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Interestingly, when I was first diagnosed 2009, exposure to radioactivity was the first and only listed cause. Strangely that opinion seems to have disappeared over the years.
All we can do is keep our minds as free from stress as possible and enjoy life . Eat well and accept the thing s we can't change.It can be a vicious circle getting anxious about all that goes wrong can't it...
Hi Andrew, an interesting thought. In my case the only possibility I came up with was potent disinfectives used in my surgery. I do wonder about the aerosol producing, smell masking gadgets that are widely advertised, pumping out who knows what all the time?
I've often wondered as you do. I grew up on a farm and was no doubt exposed to agrochemicals. I even remember enjoying the smell of petrol as a small boy! My late father had chronic leukemia at the end of his life, but I think it most likely that I was exposed to some form of mutagen.
But if they stopped all that then they would not be making millions from the drugs ,we would all be too healthy lol, jokes aside I believe I got my mutation when I worked at a electric substation ,I was always underground near large humming transformers who knows what that does to our body's......
My husband worked in the printing industry. He was forced to move an ecosolvent printer into a smaller room, which he worked in most of the day. His issues started within 6 months of that move. We are convinced this was the start of his MPN along with having a stroke. We ventilated the room right after, but the damage was already done.
I work in the petrochemical industry so I didn’t have to guess very hard how I came into my mutation. I just pray that it stays mild and new treatments prove to be effective.
in my case i question viruses and vaccine exposure. I am a huge vaccine advocate but I have PV and MS. Dr V at MD Anderson has never seen it. I have no one sick on either side of my family and both of my diseases are treated with intferons which is used for viruses. If I had hep C it would make more sense but I don’t. I did have shingles a few years ago. But I think they have postulated Epstein Barr virus could be a cause. I just know when I got the Covid booster it poked a bear in my case. Of course I had no idea I apparently had MS for years. But I am a very odd one in a million case but they are related somehow. Just wanted to throw out there that viruses may be a part of it
My Father-in-law died of PV in 1988 - 16 years after initial diagnosis. There were no available treatments for him other than phlebotomy - maybe aspirin. He was an engineer working at a petro-chemical plant for many years.
I do not know how I got my PV. I made inspections in paint booths and also have exposure to many chemicals used in running machineries during my 20 year manufaturing engineering experience in various places/plants.
Why? Why? We are all asking that question. A lot of us have our anecdotal theories (chemical exposure, sun exposure, age, electrical/cellphone exposure, vaccines)…but none of these are rooted in science (yet). Is anyone researching why this genetic mutation is occurring?
I grew up in Anchorage Alaska in the 1960's. Our surrounding wilderness area where I played all day in the forests & lakes......eating the vast number of wild blueberries/raspberries was sprayed monthly with DDT. I actually remember kids running after the big truck that was spraying it everywhere!! Looked like a large plume of spray. None of my siblings have an MPN but my brother had a rare testicular cancer rarely ever seen.
Other's my age who grew up in the area that are now my age have reported other cancers. I feel fortunate that I acquired PV versus some of the other cancers that these people have (2 with brain cancer) acquired. Count your blessings.....it could be worse. I agree with you regarding what are we doing now to prevent other younger kids from getting mutations. Seems though that there are more restrictions and regulations in place regarding toxins than in the 60's and 70's. Lucky too that there are more treatments for our disorders, although my treatment has been aspirin & phlebotomy for the last 20 years. Just has worked for me so far. Soak veggies and fruit in vinegar. Kerry
That’s the million dollar question - there’s been research but nothing definitive to establish where these mutations come from - or indeed those that cause many other illnesses.
I’ve seen research showing we may actually be born with the mutation but it’s then triggered by something later in life.
I have the CALR mutation and I’ve also seen research from Scandinavia, showing lots of people with it but who don’t develop MPNs, with a suggestion that our problem may be a combination of the mutation and a deficiency in our immune system.
Research will probably take too long to benefit us oldies but there’s hope for younger patients - great to see so much research into what were, for too long, conditions largely ignored by researchers as they are so rare.
This is interesting. A correlation between benzene and various blood cancers has been shown and it is now banned in many products, at least in the UK.I don't think other chemicals have been researched, but we really have no way of knowing. Mutations just happen in nature all the time, with or without a specific cause. I'm certainly not aware of any exposure to significant amounts of benzene or anything similar in my life.
Yes, you would think Benzene compounds are banned but they are not. Just look at products you may buy, and look for those letters BENZ, they are widely used particularly as food and cosmetic preservatives. If you look for information on the NET, Benzene compounds are described as unstable, so can degenerate back into Benzene. Even the Soil Association allow manufactured Benzene compounds (Benzoic Acid and its salts ) to be used in Organic products, but will not specify which ones. Check Sodium Benzoate, it has a safe ? use limit, but if it is in many products how can that cumulative consumption be controlled ? If it has a safe? limit it must be toxic, so why do we put poisons in our products ? Who sets the safe limits?? Why are there so many children with allergies, behaviour problems and mystery medical issues ?
It may not all be down to Benzene compounds, but the reason these compounds are use is to extend the shelf life of products, a cost saving to manufacturers, and sellers.
I have just heard of a friend's father just diagnosed with cancer, told by his consultant that his condition is most likely caused by exposure to rubber manufacture, another petroleum product which contains Benzene,
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that opinion seems to have disappeared over the years.
NGS Panel - Multiple Mutations/ Does Order Matter?
Jak2 question and PV question (have medical anxiety so nervous)
Next Generation DNA sequencing tests
ET & mild MF (negative for all gene mutations)
