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Does anyone think about what caused their CML??

Owing to its popularity this forum topic has been made permanent.

Dear all,



Does anyone ever think about what causes CML? I’m always thinking about it and just wondered if any of you have your own opinions as to what you think caused your CML? I know there are quite a few patients that prefer not to think about it as nothing is proven but I...Owing to its popularity this forum topic has been made permanent.

Dear all,



Does anyone ever think about what causes CML? I’m always thinking about it and just wondered if any of you have your own opinions as to what you think caused your CML? I know there are quite a few patients that prefer not to think about it as nothing is proven but I can’t help it! I think it would be interesting to hear some of your opinions on it.



I've read quite a few patients opinions on the subject but to be honest don't really have any of my own.



Take care all,

Martyn

Yes! It's one of the things puzzling me too! I asked my consultant about it - was I genetically predisposed to CML/breathed it in? Was it caused by stress/trauma/living under power lines [as I did 20 odd years ago]? etc etc - all the thoughts and theories you get when first diagnosed. He gave a resounding 'no' to all my ideas but I still cant help trying to puzzle it out!

The only information he gave was to say that in animals CML is often caused by a virus, and he also said that studies have commented that the incidence of CML is often higher in ethnically diverse populations where there is a high rate of people moving in and out of the area. So, I guess in layman's speak, they are getting at bugs being swapped around???? :-)
But like you I still cant help wondering.....

Janet

I have often thought about this.

I was in Scandinavia at the time of Chernobyl and was unaware of anything untoward until I got to Oslo and you could smell something wrong in the air.

From Oslo I went to Copenhagen where I queued for anti radiation tablets and started to take them. I then cut short my trip and flew home to Heathrow where the plane was greeted by medical staff who handed out leaflets requesting us to go to the Hillingdon Hospital the following day wearing the clothes were in and with our suitcase.

The following day I kept my appointment and was tested for radiation. My hair showed a little reaction and my shoes and coat but nothing else. I was advised to put my shoes and coat in the garage for 3 months. Needless to say I threw them away. I washed my hair several times a day for a few weeks.

I also had a thyroid test which proved to be negative.

I have often wondered if this was the start of CML for me. Who Knows. I have spoken to my consultant about this but there is no conclusive evidence.

Steven Davies
Dx August 2004

I've posted this before, but here goes.

There have been raised incidences of CML in people who have been exposed to ionising radiation - i.e. people who were exposed to the radiation from the atomic bomb in Hiroschima. Chernobyl didn't show any rises in the incidences of cml, it was a different kind of radiation. I believe that the problem there was thyroid cancer.
There are other things known to cause raised instances of cml. People working in the printing industry are, I believe, more at risk. Exposure to Benzine is another. There are more, but at the moment I can't recall them.

Hello Martyn

Firstly many congratulations on your milestone of 1 year post transplant this week - I always check your diary to see how you are doing - You have coped brilliantly with it all and your diary always cheers me up because you are always so positive optimistic and funny!!!

I too often wonder what actually caused my CML - I also used to live in a property adjacent to an electricity pylon - and when I was first diagnosed I asked my Consultant could there be any link - he assured me there wasnt but from reading different posts there does seem a few of us CMLers that have lived near pylons/power lines.

Another thought I had - which wasnt really nice (but I did wonder)was that as I had never smoked in my life - could it have been caused by my Mum smoking when she was pregnant with me!!!

Lots of things cross my mind I guess I will just never know what really caused it - so I will just have to concentrate on beating it instead!!!

Take Care

Julie Valentine

Hi Julie,
there is no evidence that smoking is a cause of cml. If that were the case, it would be reflected in the figures.

Janet - cml shows within 3-8 years of exposure to radiation. Assuming all other causes show within the same timeframe I don't think living under power lines 20 years ago would have contributed.

These comments are from legal people who looked into the cause of my CML.

Hi all,

Thanks for your replies. I believe mine was triggered somehow when I was at a difficult period in my life. I bought a near on derelict house that we lived in, which took me a year to finish whilst working nights 6 days a week, looking after a baby and undertaking a Civil Engineering course 1 day a week, not including course work. I put the fatigue down to over doing it at the time although everyone was always saying I looked gaunt. When the house got finished, just as I changed jobs and on completion of the course I was diagnosed, just as things were starting to improve for me. I guess that’s typical! I’ve always lived about 5 miles from Dungeness nuclear power station, has anyone heard of anything linking CML to that?

Thanks Julie,

It’s such a relief to almost make it 1 year post transplant (this Thursday) without any major problems and no traces of disease. My Mum also smoked when she was pregnant with me and I have also never smoked, but as Dennis said there doesn’t appear to be a link but who knows? I hope everything is going well for you.

Take care everyone,
Martyn

Hi everyone!

I believe, this is the question we all have. I asked my consultant about it, but there´s no clear reason for the CML, yet.In my case,I wonder if I was genetically predisposed since my grandmother had it. But still, there´s another thing quite significant and it´s that I grew up in a region were there´s a lot of chemical agents (for plants).In my town there are many cases of people with CML, and I/we wonder if this could have been determinant... When I was dx in july 2002 and went to Anderson clinc (in Madrid) for a second opinion they told me that were some theories with this chemical thing and the CML...

Best wishes to you all, chau!
Maria L.

Coyney,
your cml could have been caused by ionising radiation - the type emitted by some nucleur power stations. You would have to have had exposure to huge amounts though, so that's very unlikely.
I was exposed in Madras atomic power station, but the amounts of exposure wasn't considered high enough for it to be the cause.

Good to hear you are doing well and that the chest infection is clearing up. I think one year deserves a beer or two. I went on holiday to the Ukraine in 1992 and have wondered if it is anything to do with that but seeing as I wasn't diagnosed until July 2004, it seems unlikely.

I was back at the Royal Free for a clinic today and my PCR is still negative so I am feeling very chuffed and they are not seeing me again for another 6 weeks. I think that is probably worth a beer as well. I also met up with Susan Leigh and Maurice Carter (who had a transplant about 2 months ago and is doing well).

All the best

David

Hi
read all of the foregoing with interest, so add my bit. When I was dx and saw Prof Goldman the next day, he did quiz me as to whether I had been involved with dyes and the like in the past. I had not, but had been working as a marine engineer, building high performance boat engines, and we did use 'fresh clean gasoline' to clean off the engine parts, and then air dry with dry compressed air. So we blew benzine and the like all around ourselves and inhaled it. Great ! That apart from fallig off a boat into the rather cold sea are the only things I can think of. No chemicals and no viral illnesses in my past.
The plot thickens ?
Have fun and keep smiling

Keith

In the early 60's I worked in various chemistry laboratories and we used to use copious amounts of chemicals which are now banned or treated with great respect e.g benzene. I have often wondered if my CML comes from those days. I also used to use isotopes like Polonium 210 which is currently in the news as the cause of the mysterious death of Litvinenko. I understand that problems initiated by things like radiation and chemicals can lie dormant for many years until triggered by chance or things like stress. Johnh

Martyn
My ideas are similar to your own - CML emerged three years ago when as parents of 4 young children we were particularly run into the ground. I'm suspicious in my case that it was brought on by a severe bout of flu in Feb 2003 - dx in October 2003 but never really bounced back from Feb flu, so that may give some credence to viral ideas. One further thing which may of course be totally unrelated is that I have always been a ridiculously healthy person - never a day off school or work etc etc - everyone else in the family would come down with something and I would never get it - just wondering if my immune system was in overdrive and burnt itself out...
Never been near any source of radiation that I know about.
Congrats on your one year post transplant - bet you'd have given anything for this outcome one year ago...
All the best
Annie

Hi David,

I'll be having a beer or two tommorow night as my Mum's having a little engagement party at her house and to celebrate me being a year post transplant. I'm so pleased to hear that you're PCR-U.

Hi Dennis,

A friend of mine at work spent years in a nuclear power station and explained a little bit to me about ionising radiation. He said it can be found in some watches, microwaves, he done experiments on ionising radiation so explained how he believes it can cause mutations. It was interesting.

John, I definately agree that stress could possibly lead to triggering the mutation somehow because of my situation at the time of diagnosis as I explained above.
Thanks Annie, your right I would have given anything for this outcome, I'm over the moon.

I hope everyones ok,
Martyn

The ionising radiation bit is interesting. I found this explanation, which clarifies why not all radiation can cause CML:

Ionizing radiation is radiation in which an individual particle (for example, a photon, electron, or helium nucleus) carries enough energy to ionize an atom or molecule (that is, to completely remove an electron from its orbit). If the individual particles do not carry this amount of energy, it is essentially impossible for even a large flood of particles to cause ionization. These ionizations, if enough occur, can be very destructive to living tissue.

Hi everyone, This is a subject which I have spent many a long night thinking about.

We lived about 4 houses away from a huge pylon for around 8 years. I have often wondered if it was this that caused Aaron's CML. It has since been removed and I could never find out why.

Interesting to read all your views.

Jayne x

I made several visits to Sellafield as a service engineer in masspectrometry in the 1980's.
best wishes frank thomas

Also spent many years as a marine electrician similar to keith

Hi was dx just after my son was born,nearly lost my life having him,rushed to theatre ,had preaclampsia,went into shock. often wonder if that had anything to do with it,take care,congrats martyn,have a drink for me.love kath

Martyn
Where do I find your diary?
Vanessa

Hi Vanessa,

You can view any of the diaries by scrolling down on the CML support home page. Or just click on my name highlighted in blue below.

Take care and have a great christmas,
Martyn

As many of you know, my eldest son is handicapped & deep down I've always felt that the stress & worry during the first 8 years of his life led to me developing CML.
The following lines, copied from this week's Time Europe seem to support my idea :

Stress can age you before time :
Scientists have long suspected that unremitting stress does dammage to the immune system, but they were'nt sure how. Then 2 years ago, researchers from the University of California, San Francisco, looked at white blood cells from a group of mothers whose children suffered from chronic disorders like autism or cerebral palsy. The investigators found clear signs of accelerated aging in those study subjects who had cared the longest for children with disabilities or who reported the least control ver their lives.
The changes took place in microscopic structures called telomeres, which are often compared to the plastic wrappers on the ends of shoelaces and which keep chromosomes from shredding. As a general rule, the youngest cells boast the longest telomeres. But telomeres in the more stressed-out moms were significantly shorter than those of their counterparts, making them, from a genetic point of view, anywhere from 9 to 17 years older than their chronological age.

Since CML arises from genetic instability, I firmly believe that my illness (& all my wrinkles!)stem from the accumulation of stress & worry I experienced.

The article then goes on to say that people should do something to alleviate chronic stress such as breathing exercises or take a holiday and
"that research has shown that there is a relatively small window for reversing the physiological effects of chronic stress. Once a person's cortisol level gets completely blunted, it seems to stay that way for years. You owe it to yourself & your loved ones not to let that happen"

This made me smile.... what am I meant to do, to lower my stress level & improve my health? Give my son away? I reckon it's a bit late now.

Hi everyone

A couple of years prior to being dx with CML I had a hepatitis/HIV exposure in my former job as a police officer. I went through the standard blood testing and had what's called a "false positive," where the global screening test indicated that I had HIV, however the detailed and more accurate test thankfully showed that I didn't. I asked my doctor when I was dx with CML if the false positive could have been an indicator or somehow related to CML but he didn't think they were linked. I'm no doctor but I still believe the two are somehow connected.

Others have also mentioned being in very stressful situations prior to dx and I was going through a very stressful time prior to this too so maybe there is a link??

Adam

I would love to know the answer to this question and have spent many hours pondering over the matter.
I believe that a major contributing factor is stress.(amongst other known causes)

Four months before my diagnoses I went through the most stressful time in my life.
We had become involved in a business venture without the necessary investigation and from the start this became a ride from hell. Well after 18 months we closed the company.
During this period I often felt completely mentally and physically drained.
Eventually I gave up golf as I could not complete 18 holes. The physical effort was above my limits.
Four months after the closure of the company, during a normal routine medical check I was diagnosed with CML.
After failing on Roferon A and becomming very ill, spending a few weeks in hospital, I decided to get a second opinion and was put on Gleevec by my present Clinical Haematologist. Well 44 months later I have had a fantastic response. My BCR/ABL remains undetectable with the QPCR BM and PB tests. (for 22 months now)[greater than a 4 log reduction]

I was contacted by a lady from Cape Town about a year back who told me she had an extremely stressful time at work prior to her diagnosis and that her successor suffered the same fate thereafter. As this is such a rare disease the coincidence seems too great to ignore.

Well I may never know the answer to the question but at least I can be thankful for the remission period I have been afforded.

God bless you all.

I remember 29 years ago when first DX'ed, I had a UK Dr.
he was in Halifax, NS at the time sad to say he left, but he thought that it may have been caused by my working in high RF fields, I was in the Canadian Army and where I worked one could stand around holding a neon bulb and it would light.
In the USA California there was a rather large article about those Ham Radio Ops who ran large amplifiers having higher incidents of Leukemia and cancers than the norm, I cannot remember the year but it was a May issue of QST. I think it was in the 1980's. The name of my Doctor at the time was Dan Sheridan, from Blackpool if I remember correct, I sure would love to hear from him. He left NS to do research. Great Doctor. I am not exact but he thought the suppresion of the marrow by RF eventually cause the mutation, like Microwave ovens. This I cannot be so sure of as I forget a lot about back then I was on autopilot..

Hello all!
I have just found this forum and my name is Brian Goodier and I am 49 years of age. I live in North Wales and was diagnosed with CML in June 2006. I am currently on GLIVEC and am also on the `SPIRIT` trial (INTERFERON INJECTIONS once a week). I have recently returned to work after 5 months,and most of the time I feel ok but have a lot of side effects mainly tierdness and `toilet`problems caused by the Glivec. I also have some dry skin and sometimes blurred vision ,and aching bones!
I am very interested in the possible causes of CML and also any prognosis issues.
I feel frustrated as I have never smoked in my life , never been a big drinker and have never been close to radiation!
The only thing I will say is that I have had a lot of stress in my life.
Best regards,,
Brian Goodier

hello brian, and welcome to our group.
please introduce yourself on the main discussion forum as your introduction post will more likely to be be read by everyone who uses this site.

i am sure you will find this group to be very supportive and helpful should you need to talk about your experiences or need advice about specialist centres/molecular tests etc.

hope to speak with you on the main discussion page.
best wishes,
sandy C ;o)

Hi everyone,
I have just found this website and am finding all the comments/discussions very useful and interesting. My mum was diagnosed in late 2006, at 51, and we have been since trying to figure out anything which may have caused the condition. My mum is at home in Ireland but I am teaching in London so I am trying to get as much info as possible over here as i get the chance to do so.

Hi all

Something that jogged my memory was the last post on shingles. I suffered from my first and only attack of Shingles 3 years ago and always thought how and why.

Has any one else here suffered an attack prior to being Dx. Just a thought.

Regards

Ivan
Perth W Australia

I too have wondered about the cause of cml;the trouble is there are so many things we do, and come into contact with, it’s a job to fathom it out. I was a retained fireman for almost 15 years, and in that time came into contact with loads of noxious substances. I also worked in an industry that used lots of solvents & adhesives, no thought of protective masks or gloves then, health & safety would have a field day today. I lived right next to a factory that pumped these fumes out all day,6 local people as I know to have had leukaemia, 3 have passed away unfortunately. The trouble is that people move about and perhaps live in a different town when they develop the disease and don’t put 2 & 2 together, the factory has now gone and houses built in the last 4 years, so anyone looking round the place now wouldn’t pick this up. Also I used to garden an allotment right next to an electric sub station, and spent hours there. All my work colleagues are convinced it is due to a crush injury that I sustained, but it seems that most doctors think that it is due to stress, and in the years leading up to dx I was under intense pressure, I thought I could cope, perhaps not. Some literature says that it’s just the result of one single random mutation that’s the cause. Talk about making your head spin, one minute I am convinced its one thing, the next, its something else. Will we ever know?
Les.

i have also been wondering how i got cml, the other problem is life after bone marrow transplant, the problem which i have is sore lips and mouth, if there is info about how to remove lip sores and heal lips and mouth sores i would really appreciate.
regards, eric.

hi eric,
during my transplant i used a homeopathic remedy to guard against the problems with sore mucous membranes etc.
it is called HyperCal (a mix of hypericum and calendula) if you order the mother tincture and use 2 drops in a small cup full of hot water to bathe/gargle with you will find it not only soothes any pain but it stops the infection and cleans up your mouth.

i use it often for all skin cuts/grazes/ulcers etc.
it is very gentle in its action but a powerful healer.

you can get it by post from one of the homeopathic pharmacies:-

Ainsworth's is in London at

www.ainsworths.com

Helios is in Tunbridge Wells

http://www.helios.co.uk/

sandy C ;o)

Hi,
It's great to read how so many others have been going through the same thought processes as me. My consultant at Barts suggested that it was most likely to be more than one cause, a virus, a genetic predisposition, some environmental factor/exposure/radiation. I used to work with pesticides in a lab but that was 14 years before my diagnosis,- maybe the exposure set me up to then get the gene mutation when another factor hit - possibly stress when I was working too hard and having babies. The stress factor seems a very likely one to me but maybe not on it's own.

Its odd that nuclear radiation is the only known causal factor.
Whatever the casue, I am so grateful that I've been lucky having the NHS - getting a relatively early diagnosis and successful treatment so far.
cheers
vicki h

hello eric.
sorry to hear you are suffering from this trouble,it can be very painfull, i can attest to that.I used Corsodyl during my transplant and every time since when i have a reoccurance of this problem.The first hint I get of any trouble and its out with the Corsodyl and it soon clears it up. It seems to be available from most pharmacies, I always keep a bottle handy just in case. Please see my post under dentistry, and avoid tea and coffee, stick to water while using Corsodyl. I do hope it clears up soon, I really sympathise with you.
les

thanks for the info, i will get in touch with the adress and get some from ainsworth, really appreciate and god bless, regards, eric.

I went through all the same things most of you did, but nobody can give a concrete answer, but my grandmother and her daughter( my fathers mother and sister) both died of Leukemia. It was quite a few year ago, before any of this new treatment was available. I did have an incident where my daughter came home from sleep over at a friends house, and came home with body lice.
We had the hardest time getting rid of it.
This was over 20 years ago, but we used the old prescription Kwell Lotion that everyone used for this problem. Later on, many years later, I read an article saying it caused Leukemia, but never found any definite proof. Who knows? I wonder if we will ever really find out. God Bless and Good Luck to Everyone. Suzzie

My dad was diagnosed recently. We flew from Europe to Australia on 26 April 1986 - the day of the Chernobyl disaster. I have been wondering if this was the cause...

He also uses a lot of pesticides in gardening.

-Irene

I have often wondered how I came to have CML!

I am new to CML. I was diagnosed in mid June 2007. I am on Glivec and take part in the spirit trial. I keep very well and have little side effects. Although stomach trouble has been the worst one. I also wonder about stress being the cause - and feel that stress was the cause of CML. I have never smoked and am only a moderate drinker - a glass of wine with a meal.

Three years ago my eldest son was posted as a TA soldier to Iraq. This began 6 long months of stress for me, especially as four British soldiers were killed during the second half of his tour. After his safe return home stress continued as the area in which family home is located was under threat from development which still continues to this day. Add to this the ongoing ill health of a brother, my daughter suffered a viral reaction to tonsilitis which attacked her immune system and left her very unwell at the start of 2007. She was mid way into her first year as a student nurse, fortunately she was able to continue her studies and did not have to start the course again and all other family orientated problems.

However, I am very active despite moderate side effects from the Glivec and have not long returned from a solo two week holiday to Canada. I have a positive outlook but wonder so often how did I come to develop CML?

im not sure what the cause of CML came from.
iv often wondered about it but its puzzling.
i just think its an unlucky thing that happens to a very few people..

best of luck

Rio ( 14 yrs )

Hi
I am 50 years old and was dx in january this year and have wondered about the causes of my CML. I am taking Glivec which is working fantastically well although i have had problems with side effects.
About ten years ago I worked on a contaminated land reclamation site (for a period of about 18 months) Benzine was one of the chemicals that was detected in the regular samples we had analysed. The only safety equipment we had was safety boots and high vis jackets.
For about a year before I was diagnosed i was working under the most stressful conditions I have known, due to studying for a post graduate diploma in my own time as well as holding down a full time job where I was doing work above my station due to staff shortages. This does sound familiar to some of the comments posted here. I would love to hear your thoughts.

please email me direct if you prefer.

best regards everyone,

bill.yellowley@blueyonder.co.uk

i was dx in december 2007 nice xmas prezie :)

this was nearly 4 years after i had a bad car crash that left me in a coma for a month and a wheel chair for 9 months i had loads of xrays and i mean loads as i was rebuilt on my right side. that was in january 2004. i am 100% convinced that this is the cause of my cml, however i cant complain as i would be dead by now or totaly unable to walk without the wonderfull work done to save my life. well done radclife oxford.

oh i smoke and work in the car industry (benzene)but all my family do to and they are all ok

richard

I was diagnosed with CML in May 2008. Prior to this I was diagnosed with a rare neuropathy in March 2006 (Acute Small Fibre Sensory Neuropathy - a distant cousin of Guillian Barre Syndrome). No direct cause was ever found for this despite extensive testing here in the UK and also in the US. I cannot help but wonder if long term exposure to benzene products (perc, aka perchlchlorethylene and also tetrachloroethylene) have played a part in the development of my CML? I am 42 years of age and was exposed from birth until the age of 21. Strong links between perc exposure and the development of neuropathies have been found but very little has been written on the link with leukemia.

I cannot help but feel that the cause of my CML is environmental.

Maureen D (London and Dublin)

I was diagnosed last year with c m l three years after radiotherapy for breast cancer. I am sure this was the cause as i was burnt to the bone
it was a new centre and they had been having problems with the machines. but for now i just want to fight a new battle in my life and hope to win chrissy (AUSSIE)

i've recently come back to this support site - DX 2002 and on Gleevex since then -, as I've been interested in causes of my cancer. I am working with the www.pesticidescancer.eu campaign.

One of the reasons I got involved was because I worked with lots of pesticides, without adequate protection when I was about 21. Lots of thjem are now known to be cancer causing. I've always thought this must be a, or the, factor. i think one of the reasons no one is sure is that it is probably caused by more than one thing - the list of possibles from the thread of comments above makes this clear! My consultant said back when I was disgnosed that it culd have been 3-4 things including smoking and a predisposition...

But i do think we should work to eliminate the things that can be got rid of - and pesticides and man-made nuclear contamination are two obvious ones the government should eliminate.
comments welcome
vicki

I read this thread with great interest and I want to tell you my own thoughts.

In 1990 I was diagnosed with Dermatofibrosarcose protuberans ( I do not know the english term, it is a VERY rare form of skin cancer ) which is treatable with Imatinib. In 2006 my 9 year old son was diagnosed with CML ( a VERYVERYVERY rare form of leukemia for a youth ) which is treatable with ( drumrolls ) Imatibib...

How high are the odds against this, if it has nothing to do with (my) genes?

I think CML has a genetic origin - my son was at no time exposed to radiation, toxins, or strong magnetic fields.

www.cml-bei-kindern.com

The Listening Monks of the Discworld have found out what happend before the Big Bang:

The most skilled monks have, when questioned, identified the first sound as: "One, two, ONE, two, three, four..."

-

I work at a licenced nuclear facility and am often around fissile material. The chances of it causing my CML are very low, as its mostly low level alpha radiation (would need to be gamma to penetrate to the bone marrow). Does make me wonder though...

Louise Hay says in her book You can Heal your Life that leukemia is a violent affront to life, a holding of the idea 'What is the use....' of life, living etc

I know this is a radical idea, but I wonder how many of us have held this as a deep seated unconscious 'mantra'?

I have also heard that cancer is a 'lack of anyone 'in charge' within the body and secondly 'a call to love and play'. Can anyone else relate to these possible thought influences.

I can! and have been doing some inner work to address them.

Love to us all in the cml club.
Beth

Alpha radiation may be 20 times more carcinogenic than gamma if inhalaed, and/or ingested, and/or absorbe. Just curious are you working with  Americium-241 and/or Radium-226?

The carcinogenic properties of inhalable, ingestible, and absorbable radionuclide are so well established. It may not be that you got it on you, but that you got it in you that caused the problem.

Very interesting subject as we all at some point must wonder.

I was diagnosed back in May 2009. And I have always felt that stress played a part in my CML.

The year previous to being diagnosed was a very stressful year as we run our own business and with the recession our business suffered immensely. I was never a stressed out person, quite relaxed and chilled but that year it all changed even my partner says that I was not recognisable.

I have never been near anything toxic although I do fly quite a lot and thats where maybe the transfer of being and going to different places has a point.

But by far stress.

I have wondered about this many times since I was diagnosed and I've had all sorts go through my head. I've often wondered if it could be caused by hair dye as I had in the past year started dyeing my dark hair blonde which involved leaving the dye on a long time also wether it could be chemicals in cleaning materials, as, as a self employed cleaner before all this, I used allot of them.

It probably sounds daft but it does pray on my mind to the extent where I have stopped dyeing my hair and, although I decided not to carry on my cleaning business, I am careful about what cleaning materials I use at home now which, probably sounds even dafter as it's a bit like locking the stable door after the horse has bolted lol

That's my thoughts on it all anyway, a bit random I know!

Hello everyone,

i've been diagnosed CML on the 8th of January 2008 and since that day i often wondered what caused my CML. Several years before i used medicine treating migraine. I took this strong medicine during many years and for about 2 a 3 times a week. I often think this medicine may have effected my blood in some way and in the end caused my CML. 

I hope, in spite of my poor English, you all understand my point of view.

Take care, Johan W. from the Netherlands.  

Like a lot of people I have been stressed a number of times in my life, grief of losing my first child at birth was a major one, I have smoked,  I have had a blood transfusion, I have used hair dyes, I have had operations 3 ceasarans, so I suppose unless a survey is  done to find out if every one smoked or if everyone has had a operation I will never know

Hi, have just read everyones comments on this post. I was dx in June 2006 and have over the years been through many of the possible courses that have been listed in the following comments, I worked in the print industry, have been on very high doses of steroids for three years for another rare blood disorder, treatment for endometriosis over nine months which the doc told me was poison and to flush to pills down the toilet ( hospital consultant did get struck off), had a lung scan were I was injected with radioactive dye and an angiogram where they also inject with dye, prolonged period of extreme stress and a few acute viral infections, shingles, glandula fever etc,. so I have know idea what to point the finger at. After reading this post I decided to do a bit of research on the net and came across this article, which is a discussion between Dr's. I have pasted a small section below and have put the link to the site after that. It is in doctor speak and judging by the pictures its quite old but is very interesting.

Happy new year to you all

Apryl

Dr. Ostertag: Dr. Stohlman, you are talking about three compartments of the hemopoietic system: the compartment of the pluripotent stem cell, the compartment of committed stem cells and the differentiated compartment of megakaryocytes of myeloid and erythroid elements. You further say that in your view leukemia originates back in the pluripotent stem cell compartment. As supportive evidence you cite the chromosomal change as observed in CML as Philadelphia chromosome, which can be found in cells of all three compartments. Now you do get a specific chromosomalchange in many patients all suffering from chronic myelocytic leukemia; why can't you get the Same kind of chromosomal translocation at the Same time in different compartments of the hemopoietic system of the Same patient. A viral etiology could easily account for that.

Dr. Stohlman: If we assume for the moment a viral etiology, and I would suggest weare really talking about a virus, then this virus theoretically might affect DNA in a number of ways. The numbers of different types of leukemia are quite restricted, which leads me to think that most effects of viruses are lethal. Whether the immunologic surveillance system identifies and destroys those transformed cells which are recognized as abnormal, perhaps due to membrane changes, or the transformation results in an intrinsically abnormal cell which dies, perhaps after a few divisions, I don't know. The reason a Person gets chronic myeloic leukemia, acute myelocytic leukemia or acute lymphocytic leukemia may be either due to the species of virus that transforms the molecule or the Same species may hit DNA at random, most of the lesions being lethal, only a few of them being compatible with proliferation; the Philadelphia chromosome is one manifestation and is associated with CML. It would be most improbable for all patients to have three different cell types affected simultaneously.

To read the whole article follow this link

http://www.science-connections.com/profiles/ostertag/discussion.html

Chrissy, it is I understand an established fact that previous exposure to radiotherapy gives rise to an increased risk of CML and other blood cancers. We have a friend who is a retired oncologist who has said that it is in his mind "almost certain" that RT I had 23 years ago for testicular cancer was a causal factor in my CML. My specialist's letter to my GP when I was diagnosed said "I note his previous diagnosis of testicular cancer".


You're right though - its happened so all we can do now win the new battle - and be happy that TKIs give us a very very good chance of winning.

Hi all

I am writing this as a CML sufferers partner.  It is quite a while since I have viewed this page and very happy to see the positive attitudes and comments of CML sufferers.  Graham was diagnosed in September 2009 and was put onto the Spirit II trial and dasatanib and has had very good results, on Wednesday when visiting the consultant his blood counts are only one level away from being back to normal and has been at this stage since last June. 

With regard to what may have caused CML - Graham is a retired Police Officer and this position did come with a lot of stress, however during his service he was called to an accident which included a chemical spillage, on arriving at the scene there was no spillage evident so carried on with his duties as normal - to cut a long story short the vehicle was carrying formaldehyde.  Persons involved in the accident and Graham suffered sickness and were taken to the local hospital where venus blood had to be taken, Graham remained in hospital for about 5 days.  I often wonder if this could be the cause.

Best wishes to all sufferers

Cheryl

I have no idea what caused my CML. I was in the U.S Army from 1980-1983 and in the U.S Marines from 1984-1987. I've read about Viet-Nam vets getting Leukemia and other illnesses from exposure to agent orange and Gulf War vets becoming ill from all the oil fires. I, however, served during peace time.

I was stationed in Germany near Mainz from 1980-1982 and then in Kansas from 1982-1983. I was stationed in Hawaii during my time in the Marines, but we did deploy on a ship for training in Japan, Hong Kong, Thailand, The Philippines, Okinawa and Korea.

I was also a cop (deputy sheriff actually) in San Diego, CA for over 12 years from 1991-2004. The job and the effect it had on my personal life put me under a lot of stress.

I'm 51, but I'm very fit. I generally eat right. I don't smoke and I rarely drink.

I don't dwell on the cause, but I do wonder about things: Did I get exposed to too much radiation with all the xrays I've had? Did the stress of police work cause it?

Did I live somewhere with contaminated water? Was I exposed to certain chemicals?

Or....... Was the cause just "one of those things" - random?

Johan,

Your English is fine. I'm American but my mother was born in Leiden and grew up in Noordwijk and Haarlem. I was born and raised in California, but I've visited the Dutch side of my family in the Netherlands several times.

I was diagnosed with CML April 2nd 2013. So this all new for me. I'm taking Gleevek (Imatinib) which is working fine, but I'm dealing with a lot of fatigue. I also bruise easily.

I don't know what caused my CML. The only thing I can think of is stress.

tot straks

Greg (half-dutch) from the U.S

Hi I am new to this forum and i have joined on behalf of my husband , he was diagnosed in January of this year. It is making very interesting reading as to what causes CML, I cant believe that no one has researched this... It could have been done in conjunction with the trials of the new drug... anyways its interesting that you stopped your cleaning business just incase... My husband and I had a private house cleaning business for 5 years, we cleaned 5 houses per day, for 5 days a week, he usually cleaned the bathrooms and used the most cleaning products.. SO I am very suspicious of this being a trigger....regards Melanie

My partner was diagnosed with CML in May 2008 just after his 50th birthday. He has been on Gleevec ever since. He worked in the Oilfield for over 30 years on the drilling rigs - most of the time as the driller on the floor and breathing benzenes all day long ....12 hour days, 7 days a week for up to 3 weeks with a week off. In 2006 he wasn't feeling overly well and was getting tired easily so took some time off and then in 2007 he wasn't feeling better and was let go by his company for not being able to come to work.....Precision Drilling based out of Calgary, Alberta, Canada. His local office was in Edmonton, Alberta, Canada. He never even received a separation slip from them ....absolutely nothing. Since his diagnosis much more has come to light about benzene contribution. In this case it would appear to to be the only likely cause.