Does anyone have information about eposure to Benzene and the developement of CML?
Benzene exposure and CML
Posted 13 April 2011 - 11:42 PM
I was kind of leading to the same question the other day ( http://community.lls.../10145?tstart=0 ) because I believe I might have exposed myself to Benzene, although i'm still confirming that. It seems that there is no official link, but like Trey said in the thread, it doesn't mean that it isn't a causative factor in CML. We might never know, although, I kind of get the feeling, for me, that maybe, just maybe, it could've been a factor. I'm in the process of finding out if the the inks/cleaning solutions did infact have Benzene. Whether it did, or didn't, it's seems like it is something that might be hard to prove. It's kind of tough not knowing what caused our CML and it could be different for everyone.
Posted 14 April 2011 - 06:55 AM
The same thing has been going through my head. I guess we ALL wonder why we've been "chosen" for this lovely disease. I spent my life in the auto industry for over forty years, first as a mechanic and for the past twenty five years in the auto racing industry. I've lived my life exposed to ALL the fuels and MANY chemicals used for cleaning and propelling vehicles. In the back of my mind I thought I WOULD get asbestosis as in the early days doing brake jobs we'd blow off the drum brakes with compressed air to clean them before starting a brake job with NO mask. It would make a cloud of asbestos dust in the shop so thick the car would disappear for a few minutes, we didn't know any better. As I've never been exposed to radiation outside of many X-rays over the years as most of us have been, my doctor says that's not an issue as it would have to be SERIOUS radiation. So much for the saying "what doesn't kill us makes us stronger", I SURE DON'T feel very strong now! I guess we'd all like at least an explanation for what got us here, I'm just thankful that if I HAD to get cancer it's one that can be dealt with.
Posted 18 April 2011 - 05:43 PM
Thanks for all the replies. I appreciate the help.
My husband has CML and is doing well on Gleevec.
He is currently appealing a WSIB (Canadian) claim as he was highly exposed to Benzene with no protection. His hands were repeatedly submerged in it.
IARC issued a report confirming AML has been linked to Benzene but that CML is not on the list. However, hundreds of other studies/reports state that the results are less conclusive, mostly due to the studies being fewer and many less patients. Many of them state it is no less persuasive for CML than it is for AML.
So we move forward and hope for the best.
I will keep you informed of any changes I am aware of as it may be important to you as well. I am convinced that we are close to including CML in the many diseases Benzene has caused. Of course it is quite political to define it, as this would mean compensation for those suffering and the costs of the drugs alone as you well know, are staggering. We just need to look back at the process of say Mesothelioma or AML, they were also deemed at one point as not being caused by exposure.
Just as you said Steve, we also feel very blessed that my husband has done so well with treatment and that research continues to explore new avenues. My husband has had the best care, we have no complaints.
When my husband was diagnosed, my daughter decided she wanted to help in some way. She began making beautiful bracelets named Love Beads for Leukemia. She sells them and donates the proceeds (about $1.00 per bracelet) to Leukemia Research and a Program named Kids Coping with Cancer. To date she has raised just over $30,000.00. More importantly when she hears of a family suffering of this disease she mails them bracelets. She has given away more bracelets than she has sold. Love Bead bracelets are all over the world now, spreading the message of love and hope. She would be honoured to send any of you bracelets as who knows the trials better fellow CMLer's.
Talk to you soon!!
Posted 20 April 2011 - 12:32 PM
your post triggered a light bulb moment for me - what type of work does your husband do? Your post prompted me to do some research about Benzene and (as many may be aware) it's ubiquitous, it's seemingly in every hydrocarbon. when looking at the compenents of aircraft jet fel, it should not come as a surpise that Benzene is a constituent, albeit in very small quantities.
what makes it intersting for me is that i work in aviation and sepnt many hours climbing around inside aircraft fuel tanks and breathing jet fuel vapor and burnt fumes (I was an engine tech after all).
I know the link with CML is tenuous, (AML is less disputed), but I will be really interested to learn of your outcome.
Posted 20 April 2011 - 02:11 PM
I have done so much research on benzene it is ridiculous and has become too much of an obsession I had to stop. I had to post because it makes me so angry how they say oh, well it is possible to cause AML but not sure of CML, .......I know AML and CML are two different types of leukemia but I just firmly believe that benzene exposure is a cause for MYELOID leukemia and that is it. The gov'ts trying to get away with for paying as little as possible but also not enough research being done puts families in such a suffocated spot. How the cells for that leukemia grow and react do not make a difference in my mind. I believe the whole point is that benzene has damaged the DNA of those myeloid cell lines in some way and it either grows or "functions" at a chronic, unregulated or acute, rapid rate. It is scary because we know it is mtagenic and carcinogenic but yet benzene is in so many things..........in our sodas and coming out of our exhaust and in dyes and inks and plastics and cosmetics. It just seems that there is no chance for our children to grow up with clean air and a healthy life. I understand that there are some who can pinpoint their exposure because 'Hey i worked in Sharpie pen factory" etc (yes, my friend did:) but my identical twin sis was a clinical nutritionist who did everything she was supposed to anw as the pic of health, did not work by the radiology lab, etc. I guess, yes, like what some people say is she got dealt a shitty hand but I think we are walking around in a chemically polluted environment that is changing our DNA. I have clearly read way too much and being someone in the biology field I wish I could get out so I did not have to read anymore. But what is sad is that it is in what our kids drink and it is in what we eat as preservatives and it is in our air we breathe, etc. My identical twin had AML with no possible direct cause.........my friend worked in that factory where they said he breathed in too much fo the benzene fumes....worked making Sharpie pens for over 10 years.....they used it to clean the machines and now my sis in-law has ALL but at first they said CML because of the Philadelphia chromosome and now they are finally sure it is ALL....either way, they think it could benzene exposure because she is a civil engineer and worked around heavy machinery so it could be the exhaust or what was used to clean the machines but they also are saying because she is so close to the Chernobyl incident and that many people in that region of Eastern Europe between the ages of 18-34 are those being affected the most with leukemias and they said it could be after effect....who knows but i am too close to too many leukemias and from what I ahve read, I absolutley think benzene is a #1 enemy and it is in more pleace than we think;( I am just ranting and am sorry but I want to wish everybody strength and hope and thank you for letting me "butt" in!
Posted 20 April 2011 - 02:53 PM
We should start our own internal Poll on this sight to see how many of us have Benzene exposure-- I for one-- owned and operated a service station for over 13 years-- I have always been convinced that Benzene was the culprit of my CML!
Posted 20 April 2011 - 03:45 PM
I live down river from Three Mile Island nuclear plant in PA. In 1978 there was a partial meltdown and my family evacuated to the mountains. Since I was dx in 3/2010 I have been telling my family that I was living proof that it was a bad idea to drive right past the reactors as we evacuated to the mountains
Posted 24 April 2011 - 10:04 AM
I too have cml and am currently appealing a wsib denial on the link between benzene and cml. Could you please respond to this if you have had any further information.. It seems we both were caught in the "chronic" stage of the disease and not the "acute" stage. My question is, if we were unlucky enough to be diagnosed too late and only have 3- 6 months to live with aml , wsib would have easily allowed the claim because of the lesser cost. Now that we can take Gleevec to help with our life expentancy living with myloid leukemia, it seems that simply dying with it would be easier for the wsib to accept. I am going to fight with the wsib to the bitter end. please respond.
Posted 24 April 2011 - 10:08 AM
how can you definitively say that.....they are both myloid leukemias.... you should do your homework before making that statement.
Posted 25 April 2011 - 05:46 AM
I'm not sure I understand your statement, happyhubby. Obviously, AML and CML are both myeloid leukemias, that's the "M"!
I think that mlpastorello was saying that whether it is CML or AML, both leukemias arise from the myeloid cells and that he/she feels there's a great likelihood of a causal connection with benzene for both cancers.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 27 April 2011 - 04:13 AM
The problem with linking it to CML is the proof. They do see direct proof linking it to AML and ALL, but not so with CML (not sure of CLL). Without some sort of epidemiological evidence, any insurer (including govts) will be unlikely to pay a claim based on benzene exposure for CML. Once they start paying claims for it, they would start a legal precedence, right, opening them up to even more claims? It's a total CYA attitude, but there it is. The only way to get it covered is to get the causal evidence. Don't know if anyone is looking at it.
I can give you an example from my own experience at work. I had an employee who came to me with a very bad allergic skin rash, requiring treatment with prednisone, etc. She had gotten a compound on her skin unknowingly a few wks earlier. We know from the literature that this compound falls apart to produce a known sensitizer (which causes allergic rash). We had to file a report with OSHA that we had an occupational injury from it. I tried to get my company to list "sensitizer" in the MSDS, because I wanted to protect customers who might use it. The MSDS dept absolutely refused to add it, because they said we had no direct evidence that the compound caused her rash. So what do they expect me to do? Smear more of it on her on purpose, wait for the rash to appear, and then show them the evidence? Smear it on a couple of other employees and see what happens? It was really frustrating, but they pulled a CYA on me. It's all legal crap, science be damned. Still pisses me off.
Posted 27 April 2011 - 09:59 AM
Hi everyone! I'm new to the L&LSC. I know that hindsight is 20/20, and that you can't reverse time, but the question still lingers with me as to WHY I contracted AML. Maybe it's unhealthy to dwell in it, but for my kids' sake, I don't want them exposed to whatever made me sick. As a child, I lived alongside a gas station, with a U.S. Postal truck mechanic facility directly adjacent to it. Back in the day, they used to dump oil and whatnot in an open shed just across the alley to our house--maybe 10 yards away. Raspsberry bushes used to grow wild alongside the fence of the postal facility, and my friends and I used to pick and eat them. Others possible causes of my AML could have been the chemicals that I worked with when I used to work in a dental office, autoclaving instruments, or perhaps exposure to radiation from the x-ray machine. Paint-stripping chemicals? A defective microwave? Mowing the lawn? I also wonder if the rhogam shots I recieved during and after each of my prenancies contained something. Perhaps its a combination of them all, stress from my pregnancy (I was diagnosed when my youngest was one), or even a genetic predisposition. It's enough to drive a person
crazy. I keep telling myself that it's not good to linger in the "what-ifs", yet from time to time, I keep coming back to it.
Posted 27 April 2011 - 11:51 AM
Hi I would love to get one of the Love bead bracelets for leukemia.I have heard them mentioned on
another site but can't seem to find any here.(Ireland).Having said that I'm actually finding it difficult to
make contact with anyone here with CML.I know they're out there! :-)
Posted 27 April 2011 - 12:26 PM
Hi Kim V.........my identical twin also was diagnosed with AML when her child was one years old and was anemic during pregnancy so who knows if that started it or she had it and we had no clue....... She was a clinical nutritionist and my uncle is a hematologist and nobodsy had any answers but we all did the same thing....question everything she ate, her dog was killed months before and she was attacked by a dog at the same time so was she so depressed it lowered her immunity, was it Red #40, was it microwaves, her shampoo, did she work too close to radiology, was it the chemical preservatives in food like sodium benzoate mixed with citric acid which makes benzene (it si in everything), etc. I still question every day since I am her identical twin and have her two girls and worry for them the most........I completely feel you and understand you. Yes, CML and AML are formed from the same cell lines, myeloid as opposed to from the lymphoid cell lines such as with ALL and CLL like my sis in-law has.
I did not mean to upset you happyhubby........we are all just trying to help each other and communicate as LLS friends. Peace to you all and hope for healing.
Posted 27 April 2011 - 12:48 PM
"how can you definitively say that.....they are both myloid leukemias.... you should do your homework before making that statement."
Emotions can run hot here, but let's all try to play nice together and respect one another. None of this is cut and dry and unfortunately there does not appear to be any definitive proof that Benzene causes CML. I personally am unaware of any exposure I would have had to Benzene. If anything it may be a cause in some people, but certainly not in all.
Best to all....
Posted 19 May 2011 - 06:11 PM
CML is caused by Radiation Exposure. After the bombing of Hiroshima they saw a enormous increase of CML in the Japanese survivors. I had a Radioactive Iodine Treatment in 2003 as a post-thyroid removal treatment of Thyroid Cancer. The last thing the Nuclear Med Tech said, during his disclosure speech to me, before I swallowed that "glowing" pill was "in very rare cases people develop Leukemia." Very rare was defined as 1% of 1%. Lucky me.
I know there was a discussion on the use of the word "cancer" with regards to CML. At first I thought CML was a cancer, but after researching it thoroughly I have come to believe that it is not a cancer. It is a genetic mutation caused by radioactivity; our DNA has been skewed. Chromosomes 9 and 22 have swapped their tails, the mutation, and because of that our body produces a protein that causes an over-production of white blood cells. The daily "chemo" we take stops that protein from being created, thus our white blood cells are controlled.
Cancer is a group of diseases characterized by uncontrolled cell division leading to growth of abnormal tissue. It is believed that cancers arise from both genetic and environmental factors that lead to aberrant growth regulation of a stem cell population, or by the dedifferentiation of more mature cell types. The uncontrolled and often rapid proliferation of cells can lead to either a benign tumor or a malignant tumor (cancer). Benign tumors do not spread to other parts of the body or invade other tissues, and they are rarely a threat to life. Malignant tumors can invade other organs, spread to distant locations (metastasize) and become life threatening.
You can see there is a great difference between CML and a Cancer.
It is also interesting to note that since I was dx in 2006, NO ONE (Drs that is) talks about radioactive exposure.
I hope this helps. Take Care!
Posted 19 May 2011 - 06:44 PM
I was diagnosed Nov of 05 with CML and knew right away where to start looking. I retired from the Air Force in 96 and had worked with a solvent callled PD -680 Type II with Benzene for 20 + years. We were never told it was a carcinogan (sp) and the protective gear requriements were low. I use to wash my hands, arms, and field jackets in that stuff. When I went thru the phase of how I got it, I read about another ex Air Force mechanic who went after the Gov't for the same solvent, but he had AML. Since my dx was after the 1 year deadline from retirement, I was told by VA that I didn't have any avenue to go after the Gov't for my CML.
I am living with it now, and the catch 22 is that Uncle Sam is footing the Spycel bill for the CML they gave me.
Posted 22 May 2011 - 06:58 PM
Well I have posted this before on another thread, but I grew up in a toxic town. In the small town where I was raised, there was a Plutonium accident in the 70's that was hush hush and clean up was a disaster in it's own. The town also has a plastic factory and a rubber co. I worked in the village where those businesses spewed their toxins for years. At the time I was under a lot of work related stress and also had 2 autoimmune diseases. I just think my resistance was low and it was just enough for CML to take over. I have no doubt in my mind, but no proof either, that I got this disease from the combination of pollutants in that town. I know others from the same small town of approximately between 6-7,000 who also have CML. To me...that's pretty concrete. Not to mention all the other strange cancers and lymphomas from the same town.
"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins
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