Hi, I got diagnosed in April this year with ET with Jak2 mutation. Up until the discovery I was fit and healthy. I understood that MPN’s were rare and weren’t related to lifestyle choices. But I had a sudden moment of “what if” whilst at work today.
I’ve served over 14 years in the RAF as a comms technician. Most of my career I worked on heavy radar systems. And obviously I’m now thinking is there a connection between my exposure to Ionising radiation as a radar technician. It’s a niche question, so I’m not expecting any responses if I’m honest, but If someone does have any knowledge or experience. I’d sure be grateful.
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MadamCholet1
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Hi I worked at Airbus with chemicals for 13 months was fit and healthy prior to starting there
I started feeling tired and aching night sweats ect went to GP my bloods was all over the place my red blood cells dying off so I had high reticulate account
My spleen was enlarged and my liver
I was put on predisolone 75 mg daily reducing over months but no response or change
They asked about my job and use of chemicals
After a bone marrow test which was negative twice they told me to finish work to see if things changed
I stopped in November that year and things improved for 3 months then started again
I was sent to a different Haematolygist with years of experience who repeated the tests which was numerous another bone marrow shown nothing
My spleen was so big when cycling it was pushing down in my lower stomach I was walking bent over like an old man
They removed my spleen 06/06 year after finishing work
They thought they cured me my platelets was normal prior to splenectomy but after they shot up to a million
They said it was because I had no spleen to filter them I was dismissed for a 12 months appointment at that stage In January virtually two years after the start of everything
Then it went crazy I had an angina attack in February month after being dismissed then March I had a haematoma both required A&E emergency
Then I was put on lots medication I had gout then my platelets shot through the roof
I was sent to a different Haematolygist who did a jak 2 blood test which was obviously positive
And started on hydroxycarbamide straight away
Even after being put on hydroxycarbamide I’ve had DVTs and TIAs been a nightmare
I’m on lots of medication and under four consultants now on 1500 mg of hydroxycarbamide daily
I got a professor in occupational health and toxicology he went through all the 5 carcinogenic chemicals which in his opinion caused my blood problems
He is at Manchester university, I took Airbus to court on a no win no fee basis after shopping round for a solicitor to take it on
Taking on the MOD is obviously a big one. And I wouldn’t know where to start! To be fair, the emphasis isn’t necessarily on me to prove it, but them to disprove it. It’s not about money (although it would be useful) it’s more about me being unable to accept the “it just happens, you’re unlucky” line.
There’s a guy died of leukemia at Airbus on our team another guy had liver biopsy as I finished there chemicals I used one Mastinox was carcinogenic taken out of service now crazy
There does seem to be a fair few links to chemicals on this thread. I’m guessing they can’t know the cause of all cancers. And probably haven’t the time or inclination or indeed money to thoroughly investigate what is in their eyes a 3rd division cancer.
That's an interesting question. I haven't worked with radiation but my Dad worked in the nuclear industry all his working life and I have sometimes wondered if there could be a connection to having a gene mutation.
My father was also a comms technician in the Navy for 22 years. Dealing daily with radars on board ships so probably exposed to more ionising radiation than myself, especially with less H&S rules and regs back in the 60,s-80’s
Environmental factors are definitely major on our health; radiations, chemicals, etc. Some of these factors have been proven to make mutation in gens or are carcinogen, and many have not been discovered and/or studied yet. I think it's necessary to study health of people who are exposed to chemicals in their daily life, like nail salon staff, cleaning workers, and others. Unfortunately most practicing doctors do not care about root causes (for example, JAK2 positive or other gene mutation), as they have insufficient time and are nor involved in scientific research. They only follow standard treatment protocol. There must be a way to look at phenomena observed in treatment of patients and research conducted by scientific teams to find root causes of diseases. This could be a significant for advancement of medical science.
On the other hand, employers hesitate to allow their workplaces be under investigated and their staff's health be connected to potential workplace hazards.
Question: Can a patient of a disease (e.g., PV/ET) contact a medical researcher out of her/his routine treatment by doctor for more comprehensive study the causes of disease and factors affecting its advancement and similar things more deeply? Do you have such experience of being subject of a research while under treatment by a doctor?
Some doctors perhaps don't like others to be involved in their business.
I worked on industrial microwave for vulcanising rubber , uses magetrons much the same as radar. Friend of mine now deceased also worked in the rubber industry but we never managed to find a link.
That’s interesting. It was always an in joke that male military radar techs ended up not able to produce boys after working on radar. As a woman I always had a respect for it and did worry about long term affects but more to do with my fertility than getting cancer from it.
I’m already surprised at how many of you are coming forward having had regular dealings with radar type exposure. Maybe my thoughts aren’t so ridiculous after all....
Madam, my wife was diagnosed with ET while working in a lab. She went to a large research medical center for a second opinion as to it's cause. Not related to chemicals in the lab was the opinion. Two of the chemicals in the lab were benzene and toluene. It's unfortunate more public awareness about thesee two as they arein many common products and when a paraffin candle is burned it creates benzene. Benzene is also created when sodium benzonate an ascorbic acid are mixed together. I don't know if the radiation field could result in a chemical reaction from components in the equipment or on your person creating these two chemicals or others.
"I don't know if the radiation field could result in a chemical reaction ..."
Radiations (electromagnetic waves) can results in chemical reactions depending on their energy. For instance, red/infrared (thermal energy) waves don't have sufficient energy for initiating a chemical reaction but ultraviolet (UV) waves are chemically active (such as causing skin cancer). But, UV and even X-Ray cannot penetrate into bone, while Gama-Ray is able to penetrate into bone, causing biological/chemical/genetic reactions on bone marrow, resulting in damages. So, we should look at energy level of radiation and reaction of our body cells to it. That is why after Chernobyl and Fukushima Daiichi nuclear disasters, there were high numbers of cancers and other radiation-related diseases among people who exposed to high-energy radiations.
I also have ET and Jak2 mutation. I have never been exposed to radars beyond what any civilian might encounter.
I'm the same as you though, wondering if if was a strong "Round Up" that I used a few times on my rental properties that got all over cuts on my hands. Or a topical cream I was subscribed by my Doctor that lists rare cases of causing some cancers.
I try not to think about it because what is done is done. But I do think it's crazy that there isn't some kind of questionnaire for us. Something that we can fill out that asks us a hundred questions about lifestyle and different things we may have been exposed to. It is a rare disease but there might be some patterns that emerge. Either in the discovery, or even after we get it, maybe there are things that we could discover make symptoms progress more quickly and we could avoid them.
The short answer is that it is not clear. We do know that the propensity to acquiring the JAK2 mutation appears to be genetic, but the mutation is not a germline mutation. It is possible there is a JAK2 haplotype that can be inherited, hence the presence of familial MPNs. The trigger for acquiring the mutation is at this point unknown. It could be that there is more than one potential trigger. Perhaps if there is underlying vulnerability, then things like exposure to toxins, viruses, radiation or other know mutagens could be the trigger. There is even a theory that the type the type of genetic mutation (transversion) seen in JAK2v617f is the result of quantum tunneling (that theory is way out there).
The bottom line is that we just do not know what the trigger is. Radiation exposure could be an issue, but there is no way to know. Hopefully we will figure this out someday.
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