Causes Of ET: Hi all. Juts out of curiosity i was... - MPN Voice

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Causes Of ET

Mycancerconcern1
Mycancerconcern1

Hi all. Juts out of curiosity i was wondering how many people in the forum who have ET have ever worked with Chemical Substances or been exposed to a high energy radiation during there working life. Why i ask is that some Researchers believe that the causes could be triggered by the following on the attachment from the booklet given to me in the hospital.

33 Replies
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It would be very interesting just to see how many people have actualy bee exposed to some type of chemicals in there work place. I have also read of other possible causes working in factory's etc which i will hunt out and post.

Just found your post so thought I would reply. Yes I taught Alevel Chemistry in the days when chemicals such as benzene, toluene, 2.4 nitro phenylhydrazine, mercury etc were handled frequently . All now banned. I blamed this for my problems (ET JAK2 +) until I read that the changes in the blood can take place in yhe womb and are a genetic malfunction. Who Knows ?

Hi there, it's my ultimate aim to understand where my ET came from, what I was exposed to, to leave me with this nasty disease that's claimed two livers...

I am a scientist, a biologist who worked with benzene, acetone, ethanol etc. Believe me, the research is still not conclusive that it's a chemical-provoked mutation...hopefully we'll get to the bottom of it in time..,but I've been researching since my diagnosis in 2001

PS Of 22 of us in a lab, two of us have ET..

K

Hidden
Hidden

Hi My cancerconcern1

Thank you for raising an interesting question. In life we are exposed to so many things and I for one have had quite an extensive number of various imaging done. I found the following article in 'Blood' that I thought might assist you with your query.

Following the atomic bombs, cluster of PV cases were found in survivors of the blast living in what was left of Hiroshima and Nagasaki, Japan.

The following research is concerning Northeast Pennsylvania where clusters of PV was reported.

mpnresearchfoundation.org/R...

The Government investigation in response to this.

ncbi.nlm.nih.gov/pmc/articl...

Cheers and all the best. You will gain a great deal of comfort and knowledge from your friends here at HealthUnlocked. Stay in touch.

Mycancerconcern1
Mycancerconcern1
in reply to Hidden

Hi Annastaunton. That is good reading. Appreciated.

susieq75
susieq75
in reply to Hidden

Hi Anna thanks for the links. When no saw them I realised I had read them for a piece of epidemilogic research I did over a year ago. Here is a site that gives updates and pdfs full if information on method and analyses.

atsdr.cdc.gov/sites/polycyt...

Thanks again and all the best

Susieq

Hidden
Hidden
in reply to susieq75

Thank you Suzie

susieq75
susieq75
in reply to Hidden

You are very welcome!

I am an analytical chemist, chronic workplace exposure to benzene, toluene, pesticides etc etc. Both a colleague and I have ET Jak2+. I posted on chemicals and the cause of ET in 2017. Haem said my chemical exposure was the cause of my ET. Still working, still exposed.

Ebot
Ebot
in reply to Lab-Rat

That’s really interesting. I guess it raises the question as to whether there might be scope - (at some point in the future with enough research, cases etc) for some kind of class action against particular industries / employers. Clearly this would be a ginormous challenge to embark on, fraught with complexities and may well be years in the future but it does raise some interesting prospects. Any lawyers out there?!

Hi Yvettenaude. That is very interesting to hear. I have worked with Many materials with Benzene in them and also worked with neat toluene during my 25 years in the Protective Coatings Industry. I am a Fireproofer / Painter and used all types of solvents on a daily basis. Methylene Chloride which was banned from use and Xylene were solvents we had a lot of contact with in the 90,s for rolling the fireproofing materials. I have used all types of solvents for painting activities also which makes me think this could be the cause of my own ET. Even though we wore our protective equipment who is to say we have not still been exposed to the solvents through skin contact.

susieq75
susieq75
in reply to Lab-Rat

Yvette I remember reading your post and now as then, I am really at a loss as to what to say...still working, still exposed starkly captures your reality. I wanted to say that the public are not aware of the exposure risk of people in the various sciences...You and your co-worker are in my thoughts and you have given me a lot to ponder...

Take care

Susieq

Lab-Rat
Lab-Rat
in reply to susieq75

Thank you for your kindness susieq. All the best to you.

Hidden
Hidden

Dear Lord Yvette

Can I ask how long you have had ET and what it is you do or work on.

Kind regards and best wishes from the Sunshine Coast QLD a very hot climate. This is our Winter temperatures. As beautiful a place as it is, quite heavenly. It is very humid and HOT!

Anna ET Jak2 HU

I have worked in a hospital all my life but really exposed to radiation. I feel my ET mutation was cause/bought on by very bad stress. All happened at the same time!

😱 My ex worked with toluene for years! He tried to kill me more than once-now I wonder if he was poisoning me too......OMG......that's terrifying....

Hi MCurlygirl. Was your ex diagnosed with ET

No, I was.....

You can still smell a lot of solvents on your clothes after using them all day even if you have been wearing protective clothing over the top of your normal work wear. It would be nice to find out for definite if solvents are a definite cause as there is no written proof yet and they are still researching the causes. This is what i am reading anyway so if anyone has read definite causes i would like to hear about them.

Although I have PV, the final nine years of my working life was in and closely around diesel fuelled vehicles. Possible benzene link ?

Hidden
Hidden
in reply to KevinJH

Hi Kevin

Have a look at this link for results of research about benzene link to MPNS. Whether you still work or not I think you have reason for a claim against your condition.

Good luck

Hidden
Hidden
in reply to KevinJH

Sorry Kevin

Enter the following into Google search field. I mentioned this in my previous message.

benzene in myeloproliferative neoplasm site:researchgate.net

Cheers

Anna

Hi Mycancerconcern1,

I was exposed to large amounts of Agent Orange in the Vietnam province my infantry unit operated in during 1968-69. AO was continually sprayed all over the province during my tour.

I've been fighting the VA for several years to approve my AO / ET claim. VA has denied my claims but I keep trying. I've had ET since 2003-04. Been off Hydroxuria since 2012. My recent June blood test showed good stats and 280 platelet count.

Good luck to you....Bippers

Hi Bippers. Have a look at this from (PV Reporter) Agent Orange’s Possible Link to Rare Cancer Type Sparks Advocacy Efforts

BY BRIELLE URCIUOLI

PUBLISHED JULY 18, 2017

Exposure to Agent Orange — a toxic chemical combination used for deforestation during the Vietnam War — may be the cause of myeloproliferative neoplasms (MPNs) for hundreds of war veterans, according to MPN Advocacy and Education International.

“There was evidence very early that its use to exfoliate the jungle in Vietnam and other parts of the territory was having a grave impact on the health and safety of those exposed, including civilians,” Ann Brazeau, CEO of MPN Advocacy Network and Education International said in an interview with CURE.

Currently, MPNs are not on the Veterans Health Administration’s presumptive list, which means that veterans with MPNs such as essential thrombocytopenia (ET), polycythemia vera (PV) or myelofibrosis do not get disability benefits from the VA because it does not see those conditions as a direct result of their wartime service. Brazeau and her team are working to add MPNs to this list to help people like Barry Halem, of the Tampa Bay area — one of more than 500 veterans who contacted MPN Advocacy and Education International after developing an MPN.

“That’s too many for me to believe that it’s all a coincidence,” Halem said in an interview with CURE, referring to the known number of Vietnam veterans with MPNs. “The only thing we have in common is service in Vietnam.”

After coming home from Vietnam, where he worked on petroleum pipelines and storage tanks, Halem remained very active, running almost every day. Being in such good shape, he was surprised when he had a heart attack. Everything in his bloodwork looked fine except for a high platelet count. After seeing a hematology specialist 17 years ago, Halem received his diagnosis: ET.

The U.S. Department of Veterans Affairs has linked exposure to Agent Orange, which included the endocrine disrupter dioxin, to a number of cancers. They are: chronic B-cell leukemias, Hodgkin lymphoma, non-Hodgkin lymphoma, multiple myeloma, prostate cancer, respiratory cancers (including lung cancer) and soft tissue sarcoma.

Since his diagnosis, Halem has teamed up with MPN Advocacy and Education International in an effort to get MPNs added to the VA’s presumptive list. The organization’s efforts are ongoing and will include an event this Nov. 10 for Veteran’s Day, during which top professionals in the field — including Raajit Rampal, M.D., Ph.D., a hematologic oncologist from Memorial Sloan Kettering Cancer Center who is studying the possible correlatioin between Agent Orange and MPNs — will speak to veterans.

“We believe that it is not only essential to add MPNs to the VA’s presumptive list, but also to continue to research the link to Agent Orange/dioxin and improve the dialogue in the medical and health care community regarding chemical exposure and health issues,” Brazeau said. “The chemicals that made up the compound A/O-dioxin were referred to as the most toxic man-made chemicals produced.”

Dear Mycancerconcern1,

Thanks for this information. I'll pass it on to my oncologist. He is working on a letter to the VA on my behalf.

Take care.....Bippers

Unknown to me I taught in a classroom with asbestos in it

Hi Wyebird. Have you been checked out for this. As long as the Asbestos was in good condition and not broken in anyway that the dust could circulate it should be ok. If it was damaged in anyway i would get checked out.

Yes I knew about that but we were unwittingly pining displays into the asbestos walls. Thank you

oh not good. I would definitely get checked out.

Hi there maybe I can help? Or maybe not I’m not sure

I have worked in the printing industry and been exposed to these chemicals for 19 years. I’m no longer a printer and was diagnosed with ET in 2010 I don’t know anything about mutations and what it all means maybe you can help me with this. Do you know or are aware of any solicitor doing test cases as I would be involved?

Hi Pastprinter. I tried to claim but the solicitors backed out because there is no definite proof and its only what researchers believe can cause the illness but no real proof. Maybe in a few years time when they do discover what causes it we might have a case.

My mom was exposed to radiation when she was pregnant of me and I have ET...

Hi Artemide. You want to ask your hematologist if they think that could be how you got ET. It tells you in the booklet you should get from your Hematologist the possible causes as in the first post i sent. I only says researchers believe the things mentioned could be the possible cause but until there is certain proof i am afraid we will never know until they do further research.

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