22 replies to this topic

[CallMeLucky]

It's kind of strange, initially I was told this was a disease that if you re going to get it, it usually happens later in life and I was pretty young to get it (I was 37 at diagnosis last year).  Lately it seems like there are so many newly diagnosed that are in this age range.  As a disease that is thought to be brought on by environmental factors, it makes me wonder what is going on out there that more and more "younger" people are developing CML?

Of course, my perception may be considerablly skewed by this little microcosm we interact in.  You could argue that people of a younger demographic are more likely to seek out support in this type of virtual environment.  And I fully believe if you look at all new cases globally, this year, the ages are probably very varied.  Still it just seems like it is effecting more younger people and I wonder if that is true and if it is then why?

[Samcerly]

I certainly don't have an answer, as I was just diagnosed 3 weeks ago, at age 39.  I also was told the mean age was over 60.  That's why when I came to this board I was surprised at how many young people there were.  Interesting side note though, my sister has a son adopted from Ethiopia and is reading a book by a doctor who was there treating kids in the orphanage when they were there and came across a story of a young boy diagnosed with CML.  She immediately called me, as the timing of it is kinda weird.  And apparently, CML is being diagnosed in many young people in Ethiopia.  I also read that there is a higher rate in young people in developing countries.  I have no idea what that means, but it is interesting.  Here is the link for the doctor and his story of this little boy he treated.   

[Samcerly]

Sorry, here is the link:

http://rickhodes.org...haels-life-600/

[rct]

CallMeLucky wrote:
...As a disease that is thought to be brought on by environmental factors,... 

Who thinks that?  That has not been our experience at all, with a pretty good number of oncs.

rct

[CallMeLucky]

Since I have been reading about it and from what my doctors have told me, they say they don't know what causes it, but it is not generally seen as a hereditary disease.  Chemicals have been linked to leukemia, particularly benzene, although it seems this link isn't that strong with CML.  Radiation has been linked to CML in cases where people had another cancer and were treated with radiation and then developed CML.  The main risk factor I have read is age, as people get older, the risk goes up, but that only emphasizes my question, why so many young people?

Maybe it is not an environmental factor, but it seems in most cases it is not something that is being inherited from a parent.  You can't catch it from someone, so something seems to cause it, unless we go with the notion that it is just a mistake, it happens in everyone and some people's bodies know how to deal with it and other's don't.  But that also too leads to questions about environmental factors.  If it is merely a function of your body not being able to handle it, and it is a replication error that happens from time to time, then you would think it would be more prevalent in younger people.  It would seem that you did have the ability to correct the replication errors at one time and then something happened that lets one get by.

I have no idea, I am just speculating and I should clarify that when I made that comment, it wasn't meant to be a declaritive that the disease is brought on by environmental factors as much as what I was thinking the opposite was, that the diseae is not a hereditary one.

It seems to me that there is little focus that I have heard about on what causes CML.  I understand that, better to figure out how to treat it.  But I wonder sometimes if the cure lies with the cause.  Understand what causes it and maybe you figure out how to cure it.

[rct]

By the time you are 50 years old, most of the cells you are walking around with are the result of over one trillion replications each.  It is to be expected that at some point it will go wrong, in some way.  That is pretty much how a major researcher summed it up to us.  Most people would be happy to hear environmental reasons, because we can all try to avoid those, most of the remaining would be happy with "inherited" because then we don't have to worry if nobody in our family ever had that.  Nobody is happy with the Crap Happens Syndrome, but Crap really does Happen.  Your mileage may vary of course, but that was about the most rational explanation we ever got.

rct

[CallMeLucky]

"Nobody is happy with the Crap Happens Syndrome, but Crap really does Happen."

Crap!

[HeatherZ]

I've been thinking the same things as you have Lucky.  I was 37 when I was diagnosed last year.  It seems like we have seen more and more people "our age" posting as newbies here over the last few months.

[Trey]

The documented median age for CML diagnosis is 65 years of age.  See NCI stats below:

http://www.seer.canc.../html/cmyl.html

Why do more young people use all forms of internet "chatting" than older people?  Please phrase your answer in the form of a question. (Music playing in the background -- slowly at first, then picking up speed, and ending abuptly after precisely 30 seconds):

http://www.youtube.c...feature=related

Time's up.  What is "the average age of an internet user is 28.1618 years old"?

[Berkalvee]

I am a firm believer in the possibility of environmental factors causing CML in SOME people and I only say that because I am the only person with CML I know that had a direct blood relative (my older half-brother) that had CML also.  However, we didn't grow up together at all as he lived with his mother and I with my mom and our dad.  He was seven years older than me and died from CML on Memorial Day in 1996, a week before his 27th birthday and I was diagnosed eleven years later, about six months after my 30th birthday.   His CML was detected very late in Blast Phase because he was afraid to go to the dr. because he didn't have health insurance for a long time after he was probably already into Blast Phase. The environmental link that I always refer to is that our dad served in Vietnam and was exposed to Agent Orange, a chemical that has been linked to other types of cancers in the offspring of Vietnam Vets (but not CML, or not recognized by the US Govt. anyway) and considering that all I have ever heard is that CML is not a hereditary disease, then how else can anybody explain my brother and I having the same, super rare type of cancer at a relatively young age when most people are over 50 when diagnosed?  And I too have heard about exposure to chemicals such as benzene as being a possible cause of CML in certain cases, as is exposure to radiation (I believe that survivors of Hiroshima and Nagasaki were disproportionately diagnosed with CML compared to the general public around that time).  Who really knows?  I have asked my Onc several times to check around if he knows of anybody else in a situation similar to mine and he (and his colleagues) has yet to come across anyone like me.  Maybe I should ask everyone on here to ask their own Oncs if they have any (immediate family) related CML patients, a sort of informal poll if you will...  And I certainly agree with Trey on the likelihood that there are more young people on this site with CML than seems normal only because of the fact that there aren't as many 50-60 year olds (my parents included) that use the Internet to the same degree that we do. (our friends on here notwithstanding )

Berk

[Tedsey]

I remember reading an article about an area of Vietnam where the land and water is polluted with a chemical.  I cannot remember which one (not benzene or agent orange).  The majority of the area residents were sick or died of liver cancer.  A very elderly woman was interviewed.  She talked about how the area was plagued with sick and dying over the years, especially young people.  She had watched it all happening around her.  However, she remained untouched by any illness, (I think she was in her 80s).  She must have been born with or acquired some protection the others had not.  Despite being directly exposed to the same substance, her DNA kept copying itself without any lethal errors.  Go figure.  The article was in the Chicago Trib.  I could search for it, but it is 3 a.m. and I am too lazy.

So why do some people never get cancer and live a long life without any deadly condition?  What makes their genes superior?  Basically, what do they got that we clearly do not?

Teds  

[cherylannes]

For what it is worth, I think the cause is multifactorial.  There is some environmental element to it, because almost every paper I have read on the subject always points to the increase of luekemias noted after some disatrous nuclear event.  First awareness of a link was after the two atomic bombs dropped in Japan to end the 2nd world war.  Lately we are all hearing how there is an expected increase in leukemias (probably of all types) in Japan due to the situation with the nuclear reactor.  However, this doesn't necessarily mean that everyone will get leukemia.  We see some cases of people being dxed with CML after having radiation treatment for some other cancer, i.e. breast cancer and thyroid cancer.  Here in Canada I am aware of three patients who all reported that a parent had been dxed with CML.

My thinking is that there is some element of a weakend immune system, because I remember reading a paper on CML where the author who had a very large patient base here in Canada reviewed his patients files and interviewed each of them.  The objective was to determine what other illnesses were in the family and there was a higher incidence of colon cancer.  Our immune system actually starts in our guts and intestines.

Environmental exposure along with our overall health, stress included, just turns out to be the right/wrong mix for some of us et voila - CML.

It makes sense that older people are more prone to this disease because as we get older our bodies are not as good as they used to be at fixing abherent cellular mutations, which by the way, happen all the time. 

What is very intriguing to me is to think about all the things our bodies get right in any given day.  Recent papers published at ASH show that patients being treated on TKI's for CML do not seem to be at any risk to develop other types of cancers than the non CML population.

My thinking is that CML is caused by some epigenetic event.  This could be intriguing because thee has been much advancement in epigenetics.  Follow the links below for some fascinating stuff:

http://www.pbs.org/w...pigenetics.html

http://www.pbs.org/w...netic-mice.html

http://www.pbs.org/w...pigenetics.html

http://www.mcgill.ca...ork-epigenetics

[Stevea]

I was diagnosed at age 19.  It was actually 9 years to the day (4/19/2002)!

[rebecca428]

In '09 our son Chad was dx. at 14, his doctors at Children's Hospital said that his was the earliest case they ever diagnosed CML.

[afireinside]

i was 22, no other family member on either side had it.

[Trey]

CML has been diagnosed in infants as young as 3 months old.  Very rare in infants, but it happens.

http://books.google....epage&q&f=false

See Chapter 17, para 1

[lehrerin]

my daughter was diagnosed last year when she was 11 years old.

[Happycat]

I agree with you on the epigenetics.  Some people have genes that are just more influenced by their environments, and something just clicks on or off, starting the whole problem.

Traci

[Samcerly]

For those of you with children diagnosed, do you mind me asking what medicine they are on?

[lmnorris]

Hi there. My son was diagnosed with CML last November 2010 at the age of 17. He is now 6 months into treatment on Gleevac & doing very well. He has suffered from asthma from the age of one and has always been on symbicord (Localised steriod to prevent asthma) and was almost always on cortisone when he got a virus such as the common cold or flu as it went straight to his chest in most cases.  He was also on rhinocort aqua for sinus allergies. We often wonder if this long term, ongoing use of these drugs for such a long period of time & at such a young age, was the trigger to his CML.