I am an analytical chemist and work with DDT, solvents, endocrine disrupting chemicals, PAHs, pesticides, environmental pollutants, etc. as part of my job. I was recently diagnosed with ET JAK2+ and am on Hudrea 500mg/day. Platelets were 1.4 million, now 900 000. The haemotologist asked about my occupation, when I told him I am a chemist, he answered 'there is the cause of your ET'. I too am convinced there is a link between chemical exposure and ET/gene mutation. I live in South Africa so on top of occupational exposure there is also every day chemical pollution exposure via air and water pollution.
I am so glad to have found this site. The info here has been so helpful. My ET symptoms are leg and spine pain, dizziness, silent migraines, fatigue, brain fog, bruising, weight loss. Since being on HU I now also have sweating, restlessness, anxiety, insomnia, urinary tract burning sensation, brain fog+fatigue seem worse.
All I now know about ET I had to research myself. The doctors did not tell me that it was a MPN. I was just told 'you have ET'. Thank goodness for the internet and this site.
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Greetings and welcome Yvettenaude. . I was diagnosed with MPN Myelofibrosis in 2006 and at the time was asked if I worked with chemicals namely Benzene and Toulene. I was a painter decorator and spent many happy hours breathing in fumes from gloss paints and various chemicals used in the trade. Apparently a good number of chemical exposure workers diagnose with blood disorders. Probably hard to prove but knowing what I now know I think you are at greater risk.
Your experience of Hydrxycarbomide is not unusual but doesn't make it any easier to bear. Hope it reduces your platelets further without any dose increase.
Hi Chris, thank you for your kind words. It does seem there is correlation between chemical exposure and blood disorders, but as you say hard to prove. All of the best to you.
Strangely my landlady gave me some oil based egg shell paint to use and I don't want to - my friend said swap it for water based.. I try and limit my exposure to chemicals.. as even bladder cancer has been linked to chemicals in hair dye, there is no doubt in my mind that chemicals change our DNA make up and cause issues.. it's just getting the proof.. I don't want to risk myself being exposure to any more cancers, I can just about cope with two!
I'm not the best at taking my own advise. I fear if we look for every toxin it will end up consuming the normalcy we have. So many recommendations are made by sales people. I am a semi- retired Nurse Practitioner. I always used to tell patients if we had someone that REALLY worked it would be mainstream. It wouldn't be formulated by a Dr. Somebody who just says Doctor - Doctor of what? In the States I could put ground hair clippings in a capsule, create a provocative promise on the box and retire. Stay with your Hematologists. Change if the personality isn't a fit. Registered Dieticians and Nutritionists are different. In the States you can call yourself a nutritionist if you are selling nutritional supplements. I do find that frustrating. Too often our vulnerability is taken advantage of. I like drugs that have been around for years (no surprises).
I have ET and take Hydroxyurea. (JAK2+) My hair is coming in white and thinning a bit. There are so many devastating CA diagnosis made every day - pancreas or brain. I will take my ET and seek wisdom from the leaders in the field.
Trying to avoid toxins in 2018 would have all of chasing our tails.
There is something online i once read about a concentrated outbreak of MPN patients in philadelphia which they believe was linked to a chemical leak (benzene i think) in the area.
Hi Paul, Yes you are right. A Google search will pull up more info now. Best wishes, Lyn
Hi,
Sorry to hear you are here because like us you have a rare blood cancer, but thank you for sharing your story, I always think we learn more from each other sometimes than we can from any Doctor or internet search! I definitely agree. I am very interested in the causes because for me if we can eliminate the cause or greatly reduce the risks we can reduce the need for a cure!
You came to the right place as there is a wealth of knowledge shared.
Hello and welcome to the site and the little team of friends you will find here. Yes it is a great source of information and tap into MPN Voice also for more. And yes causes via exposure to chemicals etc very interesting. The consultant I am under here in the south of England led a research programme couple of years ago as to causes and many of the elements looked at and data gathered was the exposure of the hundreds that took part throughout their life to a variety of chemicals etc. Even down to having lived near golf courses at any time - when I queried that it was said something as simple as living near a course that is contstantly sprayed could be an considered factor. So yes much research goes on and it all helps us. As you see I am fortunate all the consultants I have been under very good with MPNs (I have ET diagnosed 10 years and on Hydrea) but I have still learned the most from this site and MPN seminars - also try Patient Power based in the USA very good info there. And with HU you may well find in time that your body adjusts and you tolerate it better - it is an excellent treatment to assist us. All the best keep logging in !
You will get loads of support and information here .
Interesting what you say about chemicals and pollutants as I worked for a couple of years at Gatwick airport as a profiler and I spent a lot of time in and around aircraft especially near take off and landing .
Again no proof but it seems a good few of us were exposed to something .
Hope you will feel much better soon as your platelets drop .
Welcome, I to have ET JAK 2 Pos and suffered many of your symptoms plus I have an underactive thyroid, I have been on Asprin and Hydroxycarbamide for a few years now and a lot of my symptoms have started to disappear all be it slowly and this forum is just one amazing place to be, it proves we are not alone, all a great bunch of people.
As for chemicals it makes you wonder does it not, even down to household and gardening sprays i.e. pestersides, especially there overuse.
Anyway welcome from South Africa, you have found us.
Speak with Maz she will send you booklets which will really help.
I agree with everyone who says that chemicals a very high risk factor. This and ionising radiation. I had been commuting to work by air for about 13 years before diagnosis and I am absolutely convinced that high frequency of exposure to diesel fumes and ionising radiation had contributed to my illness. Airports are swamped in both. My research shows that there is no evidence of higher incidence of MPNs among airline crews (who retire early) but there is no data for retired airline crews.
Very often it's a combination of factors, including high levels of stress. There is evidence to show that stress most definitely causes genes to mutate.
As regards chemicals, it shocked me to discover the dangers of redecorating one's house. Some cancer websites say not to decorate while you are fighting cancer. Sometimes it's not possible (if, for example, you have a leak through the roof like I did a few months ago), but there is paint which does not emit harmful chemicals. It is called Lakeland and can be bought from their website. There are others too but only used Lakeland. My decorator tells me that it is different in application from "normal" paint, and you need to use more, particularly on wood, but at least it does't kill you...
I was diagnosed with Myelofibrosis a couple,of days ago, and I have lived near Gatwick airport like Helen1952 for about 30 yrs. I also worked at the Prince of Wales Hospital in Sydney the 1970s in a wooden building tacked on to the wall of the radiotherapy department. We used to joke about the radiation sleeting through the walls. Maybe it wasn't such a joke after all.
My understanding is that the JAK mutations are definitely environmentally acquired.
Is anyone aware of any empirical studies looking at this in any detail? I was an experimental psychologist in the 70s and have a background in statistics, so I'm aware how hard it is to demonstrate any causal links between disease and specific environmental factors but it is worth trying to do so.
Welcome to our global (albeit somewhat exclusive by selection) club...
My name is Steve and I am from Sydney in Australia. I was originally diagnosed with ET when by sheer accident I was undergoing a standard medical before taking up a 12 month posting in SE Asia.
My platelets were at 1.7 million at that time May 2016. I was commenced on Hydroxurea (HU) 500mg before moving to 1000mg per day. I found that experience, especially the over-bearing mental fog most disturbing, and after circa 8-10 weeks I asked to try Interferon injections every two (2) days instead. While I did not enjoy eventually learning how to inject myself, I did find managing my symptoms was marginally better, (especially the clarity after the mental fog vastly improved - for me at least).
Apparently, some drugs work better for some than they do for others... (the mysteries of our human chemistry...)
Unfortunately, in my case, my diagnosis was soon changed to early Myelofibrosis when the results of my bone marrow biopsy (BMB) became confirmed after further analysis.
I am now taking 20mg twice a day of Ruxolitinib (Jakafi) and although there was a minor blip, all my vitals appear to now be responding as they should (about 6 weeks along now).
I still have a few aches and pains, but I have also recently started and exercise regime programme that I am trying to maintain consistency with. Some days are worse than others when I just seem to hit a wall and all I can do is sleep. I still have some nausea from time to time but my spleen may have started reducing in size marginally, (I hope...?), because I am now trying to have a light morning snack infrequently whereas previously, to do so was simply too uncomfortable...
Prior to my diagnosis, I was volunteering in my local community garden group and trying to help them all understand the many dangers that we are all exposed to through toxic chemicals, and how many Multi-national corporations (MNCs) have convinced us through various forms of marketing, that such chemicals are benign and harmless to humans and other living organisms...
... that was not the result of my research into the subject matter.
I have a degree in Sustainability and while I do not consider myself an expert, I have gathered a plethora of information relating to the harms that some chemicals like 'Roundup' are doing to living cell structures. Early results strongly suggest that they can and do cause mutations at the micro-cellular molecular levels.
There is a You Tube called GMO OMG that can be watched freely on the web, just Google the Title – GMO OMG. There is also a DVD available for purchase... While not entirely scientific in its approach, it remains a most compelling documentary all the same.
I had been asking my Community Garden group to stop using chemicals where the children an older seniors were being exposed (prior to my own diagnosis). And I came up with many very useful alternative arrangements and initiatives, however, it was not until I informed them that I had contracted a rare blood cancer that they finally determined to no longer use 'Roundup' in or on the gardens... Yay!
Unfortunately, however, the local authority still uses it without any forewarnings in all the reserves, parks, and native bushlands... State governments in Australia (and no doubt globally, earn very significant subsidies through the tariffs of trade relations etc).
As our Community garden is located inside a small reserve, the Local Government Authorities (LGAs) still spray outside the cyclone fencing boundaries, and some spray-drift occurs which carries those harmful chemicals back onto the produce...
My understanding to date, is that many carcinogens expose us all to a life of dangers that are really perceived nor completely understood. Every time we fill our tanks we expose ourselves to toxic vapours, as just one common example... It is no co-incidence that the majority of people afflicted by various types of cancers usually occurs in our latter lives (after a life-time of being exposed to so-called harmless and benign concentrations of various toxic chemicals).
We all live in a world where we place economics ahead of the other two (2) pillars of our lives – Society and the Environment.
Only a complete change of human ethic can alter this course, in my view...
Can we prove it? Of course we can... It just takes mega stockpiles of wealth to make the case known... You might also remember the CEOs and other executives who sat in the American congress stating that: "... cigarette smoking does not cause lung cancer..."
For anyone that is really interested, there was a book written by a wonderful person - Rachel Carson, entitled – 'Silent Spring'.
Carson was a marine biologist who learned how DDT was killing the natural flora and fauna in her district. After an epic battle with the economists and MNCs, Carson succeeded in having DDT banned for use by the US Congress. That ban lasted a decade, then Carson died of cancer... And DDT made its return globally...
It is still largely used to combat malaria, even though authorities now know that there are much safer alternatives available...
In short... YES! I have very little doubt concerning why we have all become afflicted with this rare mutation that has caused our various MPN conditions to have evolved...
I totally agree too. Just read your post in 2021! I have had PV for 15 years. I am nearly 70 now and I spent about 25 years working in a research lab. A lot of my work involved analysing environmental samples for priority pollutants. So, I handled lots of solvents like benzene and dicloromethane etc and although some tasks could be done at a fume cupboard some could not. I know that I have breathed air contaminated with PAHs, pesticides and lots of other nasties. By the time you've extracted and concentrated samples, those nasties are at a concentration that they can be measured by GC and GCMS techniques. I have spent 100s of hours sharing lab space with this kit while my carefully prepared extracts were being analysed and I was reviewing previously acquired results. I could smell the benzo (a) pyrene in the air close to my GC and GCMS kit. It is carcinogenic ...... like lots of the other substances in the air that I breathed. At least one of the buildings that I worked in was old and did not have adequate air conditioning. In the basement where I worked, stale air just hung about. I was young and so keen to do this work that it never occurred to me to complain about the air quality in the labs. !!!!
There is a big, However, here that should also be considered...
Some time back I framed a few other questions relating to 'Familial Disposition', I.e. 'Other family members that I have any type of cancer'.
as it turns out, many people here responded, (including myself), for having an immediate relation & others in my family, that had some type of a cancer...
My father had Non-Hodgkins Lymphoma (NHL). He survived the cancer after 3 Remissions & still manage to be almost 87 yo before he passed etc.
Anyways, it is an interesting topic all the same...
Hi Steve, Yes it is a very interesting line of exploration. In my case, cancer does not seem to have been a dominant theme in the family. Neither of my parents had cancer and only one grandparent ..... he had bowel cancer and died following surgery in 1961. He was in his mid seventies. I have one sibling and so far so good for him.
In my Dad's case ..... he was a life long smoker and although he did not have cancer, he did have COPD, emphysema and heart disease ...... all related to his smoking I think, plus type 2 diabetes and osteoporosis .... 2 vertebral fractures in his late 70s.
My Mum died of ischemic bowel disease at nearly 97. She also had osteoporosis .... 2 vertebral fractures in her late 80s.
However, my Dad did not like getting his skin wet ...... said it made his skin itch ..... this seemed interesting to me after I was diagnosed with PV ...... 'cos he was not diagnosed with an MPN and he had numerous blood tests later in his life.
Epidemiology is a very complex science. One of the mpnvoice consultants is trying to get a good epidemiological study underway it's called Mosaic ..... haven't heard lately how they are getting on with funding it.
Sounds like your Dad may have had an undiagnosed MPN(?)
And that is commonplace where MPNs are concerned, because they remain such a rare condition, & are often only ever picked up by sheer accident...
Yes, heard of that study too... (Mosiac) However, what was really interesting was the thread we created for ourselves, and the many people who contributed their responses, who also had some either obvious direct connection, (or somewhat less direct...) But it showed that many people here on MPN Voice, were definitely involved via some kind of genetic heritage w/ their MPNs...
That is not to say that acquiring an MPN through continual exposure to toxins is not possible, but that might just see an earlier response, or even a more profound one(?)
Hi Lyn44rms, oh wow a fellow chromatographer-mass speccie!! Yes, our work is identical! Perhaps we even attended/presented at the same international conferences...
I still work, run a large GC-MS lab at a research university. Priority Pollutants are carcinogenic/toxic/persistent etc. And as you say they may appear at trace levels in the environment but we then concentrate it in the lab to analyse it plus we work with the pure, neat compounds to confirm so the levels and number we are exposed to on a daily basis are much, much higher compared to the general population. A colleague of mine has ET. As far as I know American soldiers with MPNs exposed to Agent Orange can now claim due to the associated Dioxin. Looking back at my blood work I’ve had a MPN since my early 40s, years before I was officially diagnosed. I have no cancer in my family, all in very rude health, alive well into their 90s.
I was reclassified as grade 1 early MF, also on Jakavi. I hope your blood counts remain good on Rux.
Hi Fellow Lab Rat, Thanks ...... yes I'm good on Rux except for the weight gain.
You are doing amazingly well ..... still working in a highly demanding job. I'm in awe. More power to you!
I've had some really rough times before getting onto Rux. And like you although formally diagnosed as having PV just before joining the Majic Study in 2015 and starting Rux, I was subsequently told that I was in early stage MF. BMB done at that time showed that my bone marrow was quite fibrotic and I hadn't had my usual venesections in ages. I was so poorly back then and Rux was a real life saver for me.
I do hope that you continue to do well and enjoy life.
This topic has me thinking as I worked in a hospital during the 80's where I became unwell with mysterious symptoms and had to quit after about one year. I then became chemically sensitive but managed to get somewhat better for a few years. Cleaning up my environment and avoiding exposures helped. I became a massage therapist in 1995 where I became interested in aromatherapy and began working with essential oils thinking they were natural and not synthetic fragrance. I began a business and kept large quantities of oils in my basement, no good ventilation.
My platelets did not start rising until 2000 but we're still high normal but then developed pericarditis, had fluid around the heart sac which after draining through surgery said it was viral. I recovered then in 2005 became a realtor and with high stress my platelets began climbing.
I'm going to retire this year and sell my biz, yes I'm still doing it but now work out of my garage so much better air flow. I know this has played a part in my ET. Even so called natural things in excess can be bad, at least for me. Thanks for sharing everyone and especially to Yvettenaude for her post.
Hello Yvette, welcome to our forum. I am sorry that you are having these side effects since being on Hydroxycarbamide, you should speak to your haematologist about this as it may be that you are experiencing some of the less common side effects which affect one person in 100 to one person in 1000 (0.1 - 1%), they do include headache, dizziness, disorientation, hallucinations and convulsions, changes in kidney function and temporary impairment of the kidneys' ability to filter blood, fever, chills, malaise, and a few more unfortunately, so speak to your haematologist about possibly changing medication. I can see that the lovely people on this forum have advised that you read the information on our website, and as suggested, I can also send you some of our information booklets, just email me at maz.cd@mpnvoice.org.uk. Best wishes, Maz
My story is almost the same (I am Danish and have ET Jak 2 Neg---medicated since 3 years). I worked with animal medics (pig breeding) --lots of "secret" stuff--only named by a few numbers, so impossible to identify--besides we used tonnes of repellent, formic acid in the water, Neomycin atomisation, hormons--you name it.
I have always believed that it was these things which caused my "bodily breakdown".
I am on Pegasys 45 mg every 3rd week. It works fine, but the side effects are like your's.
To ease the pain I take Iron tablets . I take it like people take painkillers--when the pain is really bad---and it helps. Normally 3 days until the injection and then again the 3rd, 4th and 5th day after.
In my opinion the pain is caused by the acid that is created in the muscles--before injection, because too many blood platelets causes lack of oxygen and after because of the toxins created during the decomposition process of the blood platelets.
Vit B (esp B1) is super !! Vit D ---will cause less depressions--but I am not sure that the depressions are "real" --they are more like hard exhaustion--and of course one feels depressed when living in a constant yearning for one's bed
Besides-- I get lots of physical exercise. It is NOT pleasant--but it seem to work. I get more oxygen and I feel better. I have absolutely NO support from my doctors, so I feel rather lonely---glad I found this place, for sure
Thank you for the helpful tips re iron and vits. I have been wanting to reply sooner to all the wondeful posts but I suffered adverse effects from Hydrea. I was told to stop taking Hydrea and am seeing oncologist next week re new plan of action. All of the best to you.
I live in the United States in the upstate NY area and work at a physical therapist. I was diagnosed with PV, Jak2+ two years ago at 54, just 2 months after my younger sister, (48) was diagnosed with the same. Our mother, who was always a stay at home mom, and cooked many of our meals from the large garden we had, was diagnosed last month with ET, CALR+ at the age of 84. My sister and I have both been on HU (hydroxyurea), and 81 mg ASA since diagnosis due to elevated platelets and high symptom burden due to the all of the elevated blood cell lines, along with having therapeutic phlebotomy as needed.
Once I was diagnosed, I wondered what we could have been exposed to since these rare blood cancers may be familial in only 6% of those with MPN's according to the MPN experts, however, the gene must mutate in the environment, as we were not born with the disease. I realized then that we grew up and had lived near a facility for the first 20 years of our lives, that was found to be illegally burning depleted uranium from weapon manufacturing and putting it out in the atmosphere through unfiltered smoke stacks. Many people died of cancers at young ages right behind the facility as well as those who worked directly at the facility. We lived 1.5 blocks away. The New York State Department of Health had set up a Biomonitoring Project in 2007 to test those that lived around the facility, however, since we had all moved out of that area by then, I did not realize this, as we were not diagnosed with our blood cancer until 2014, after the study was completed.
However, I have contacted the people in charge of Epidemiology at the Dept. of Health to see if my family could be tested to see if we have depleted uranium in our blood, as I believe this could be the catalyst that turned on our gene mutation. I do know of the cluster of those that developed PV who lived around a Superfund coal waste site in Pennsylvania back in the early 2000's. Neither of us have ever smoked or been exposed to smoke or chemicals in our family lives or in our professions that we are aware of and had been in excellent health up until we were diagnosed.
So far, I am still waiting to hear whether my family can be tested for uranium as part of this project. I also just developed new issues where they found 5 nodules in my thyroid; one that has grown large enough to place pressure on my larynx, making it difficult to speak. I am now being biopsied to see if this is also cancerous. Uranium has been known to be radioactive for millions of years and may be retained in the lungs, lymphatic system, kidneys or bone marrow (and may also affect the thyroid). I had previously seen a specialist at Memorial Sloan-Kettering in NYC who is researching MPN's. It is difficult to obtain funding to continue to research what actually causes our MPN's, however, I am a firm believer that we may have many different exposures in the environment and the foods we eat.
As far as the side effects of Hydroxyurea, it is common to have mouth sores and other minor symptoms, but they usually go away or become much less frequent when your body adjusts to the medication, however, if they are too burdensome or not the typical symptoms, you should discuss this with your hematologist/oncologist, as the dose may need to be titrated, or the use of other drugs such as Pegasus interferon or Jakifi are used for those who do not tolerate the first line of therapy, which in the U.S is Hydroxyurea. Unfortunately, they all have their own side effects and each of us reacts differently to medications.
I wish you all the best as we go through this MPN journey together. Maybe one day soon, more research can be done to determine what actually causes our genes to mutate and better therapies can then be made to provide us with either a cure or improved quality of life with this chronic blood cancer.
Your story is shocking. To have an uranium facility where people live, criminal! I hope you will be tested soon and that there will be compensation from the state. All of the best, Yvette
I was diagnosed with ET.about 7 years ago and now with3 years of Myelofibrosis and I was biopsied at the very beginning of ET and was told that I was negative for the Jak2 gene that could have been the one way of having this cancer and was asked if I was ever exposed to BENZENE..I was exposed back in 2000 by the way of living near the train derailment of3 cars carrying thousands of gallons of the chemical.It was in the water and in the air and tookl 12 weeks to clean up and it happened in Scottsbluff Nebraska ,USA.several people in the city have been sick due to the spill.
I hope you are as well as can be. I was fascinated and saddened after reading an old post of yours and wondered whether you have managed to find research re depleted uranium and MPNs. The website researchgate.net is brilliant and contains results of scientific research undertaken by many. When you want to locate something you may like to try the info you enter on the search field a number of different ways. I did a search on depleted uranium and MPNs by entering the following into Google search.
My mom got radiation when she was pregnant of me...the test where you drink a liquid and then they look at your stomach with radiation...I have ET CaLr and I got the same test when I was 10 so I think radiation is the cause of my illness.
Hi Lab Rat, I've only just come across your post. Its May 2021, and I'd just like to say that I did similar work to you and I was diagnosed with PV about 15 years ago. I am JAK 2 positive. My profile tells my story ....... very similar to yours I think. Best wishes, Lyn
Greetings and welcome to the club no one wanted to join but everyone is glad to be a part of.
It is certainly most plausible that exposure to toxins could be the trigger for the mutation that causes ET. You did not mention whether you have one of the driver mutations (JAK2, CALR, MPL) or fall into the triple-negative group. It does matter as does your mutant allele burden and the presence of any non-driver mutations (e.g. TP53, ASXL1, TET2, NF1, etc.) .
As an analytical chemist, you are well equipped to understand the biochemistry, including the proteomics, involved in MPNs. The JAK-STAT pathway is quite ubiquitous in its impact on the body. Hematopoiesis, immune response, and inflammatory response are all driven by JAK-STAT activity. The overproduction of inflammatory cytokines is thought to be responsible for many of the symptoms we experience.
It sounds like you are having some problems tolerating the hydroxyurea. This is quite common. Some people are able to tolerate HU and benefit from it, but not everyone can. "Hydroxyurea is a highly toxic medication with a low therapeutic index." American Society of Health-System Pharmacists. Some people do find that increasing hydration helps with tolerating the toxicity of HU. Here are a few resources on HU just in case you have not seen them.
There are several other treatment options for ET should you find that HU does not work for you. PEGylated Interferon is an option, as well as anagrelide and ruxolitinib. Here are a couple of the better treatment protocols for Drs. Harrison and Spivak. .
It is very important to consult with a MPN Specialist regarding your care. Most docs, including hematologists, do not have the KSAs to provide optimal treatment for these rare disorders. Here is a list of patent recommended docs with MPN expertise. There are two listed in South Africa. mpnforum.com/list-hem./ . It is worth doing whatever it takes to see a MPN Specialist.
I am an analytical chemist, as well. Seems like you’re on the GC-MS side of things, whereas I’m on the LC-MS side. Having high platelets has certainly made me more conscious of all the chemicals we work with on a regular basis, although my platelets have been high long before I got into this business.
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