The Leukemia & Lymphoma Society - Fighting Blood Cancers
48 Replies Last post: Nov 2, 2009 12:10 PM by montyscorner   1 2 3 4 Previous Next
momof7   90 posts since
Apr 5, 2009
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Apr 14, 2009 10:42 AM

Epidemiology of childhood cancer??

The forums usually have very concrete questions and answers, so I thought that  I would throw out a more abstract discussion that I have not seen posted anywhere........

 

Since Matthew is at school today, I have a bit of time to post a question that has been absolutely driving me to insanity for the last two years.  Since this is a large forum of parents with children who have cancer, I figured, it's a good place to get a lot of opinions.  Every breathing moment, consciously and subconsciously, I ask myself, how did my child develop this horrible disease (in my sons's case - t-cell ALL)  What happened to the perfect system of cells that all of a sudden decided to go and get so confused and screwed up????  I have researched theories, yet none seem to give me answers to my questions, as every child's case is different.  Yet it is shown that , for example,  ALL has its highest incidence in 3-5 year old BOYS  - Why?  Next time you go to your clinics,  take a look around and notice the amount of small boys, it's incredible.

 

Since I have six other children who are perfectly healthy,  I often analyse what was done differently about the last one.  The only varying factors are that he may have been exposed to more EMF due to a damn portable phone I had close to his crib (which is now in the garbage); a new plastic crib mattress (which really smelled awful of plastic - we all know how bad plastics are); his toddler bed used to back onto a wall which contained a 240volt dryer plug (?- more EMF) and he was the only one of my kids who had a second ultrasound (which I know that more and more mothers are being told to get while pregnant).   The last factor which I also wonder about is that a few weeks before he was conceived, my husband was spraying some fruit trees with regular insecticides - which we don't routinely use  - and during this application, the pump he was using broke, leaving him with a pretty good mist of poisons blowing up in his face, which bothered his lungs for the next few months.  Other than the above, I can think of nothing else as all the other known factors which may/may not influence the incidences of cancer had already been addressed, i.e.  breastfeeding, excellent diet, no vaccinations, no other meds, no electrial tower, cell phone waves, microwaves, etc., no use of harsh household chemicals, no wireless applications in the home whatsoever, etc.,..............or is this all just a random event which occurred with all of our kids??????  And the funny thing to me is that no one at the hospital really seems to care how it comes about as we are never asked any questions about lifestyle, diet, environment, etc. after our kids get diagnosed....

 

Anyone else wonder ????Can we prevent it from coming back??????Or do we just wait out the rest of our lives simply day by day????The fear of the unknown is a terrible way to live.......especially when it comes to our children........

 

Any thoughts, or should I just stop wondering ???

 

]

kimmeebee   267 posts since
Apr 4, 2009
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1. Apr 14, 2009 11:37 AM in response to: momof7
Re: Epidemiology of childhood cancer??

I'm so glad you opened this up for discussion!

 

I worry myself sick over this. Emma is my only child. I failed at breastfeeding, smoked before I knew I was pregnant, got many ultrasounds, nuked her bottles, the list goes on and on and on. I have to remind myself constantly that there are kids out there licking lead paint off their cribs and THEY don't get leukemia. Why Emma? And why doesn't it happen to all the children who live in households similar to mine?

 

My friend emailed me a while back regarding nitrites. I ate bacon or sausage for breakfast EVERY morning during the second and third trimsester (I ended up gaining 55 lbs, but it was worth it! LOL). I freaked out and thought, well that's it! That's how it happened. But then I researched and there is no proven link. So I was back where I started.

 

To be honest, I don't want to know how it happened if it was something I did. The guilt would kill me.

hero4   180 posts since
Apr 4, 2009
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2. Apr 14, 2009 11:54 AM in response to: kimmeebee
Re: Epidemiology of childhood cancer??

I think this is a fair and very common concern for all of us.

 

I do believe though that if they knew, we wouldn't be here right now.  It is something that happens and one thing I was always told by our team is that they basically ruled out one specific cause and believe it is a mixture of causes that unfortunately all happen at the same time to create this very rare occurrence.

 

They do believe some may be genetics, some lifestyle and some viral.  It is something that has happened to one specific cell and for some reason, an immune system that didn't pick up the mistake and thus cancer developed.

 

I think they do know now that many, many babies are born with leukemic cells in their marrow, but they eventually die off and never turn into anything.  For some though, that doesn't happen - why?  We are not sure.  I do belong to a blood cancer research forum that I find extremely helpful.  Almost daily they post news articles about advances being made in treatment of blood diseases and many on leukemia.  The main concern is yes this happens, but when it does, why do 85-90/100 kids get cured and 10-15/100 don't.   Many of those articles are very interesting and even though a lot is over my head, I get the jist of it and strongly believe they are on to something.   I did read once that there were twin baby boys and one developed leukemia.  They did test the other twin that had no symptoms and found a small amount of leukemia cells in his marrow.  They waited a bit and retested him; and when they did, those cells were gone and they continue to be gone.

 

My son had many ultrasounds, but so did others that we know, and they didn't get leukemia.  My son slept on the same plastic crib mattress as our daugther and she's fine.  I do know that many kids are diagnosed in the heart of cold and flu season which almost brings the theory of viruses to some truth.  Some docs believe that the leukemic cells are sitting dormant and then a viral hit will set it off into action.  Someone on this board posted before that it is interesting to know that we all develop cancer cells, probably on a daily basis, but our immune systems recognize them and fight them off.  For people that develop cancer, why isn't this happening?  I think that is one thing that researching are trying desperately to figure out.

 

Recently on that site that I frequent, it did mention that they are looking at a link of leukemia starting from a viral infection - very interesting.

 

Anyway, I hope this helps a bit.  Believe me, its been on my mind now for three years.  I've just learned to think positive and hope and pray for the best always.

King Alex   116 posts since
Apr 6, 2009
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3. Apr 14, 2009 12:01 PM in response to: momof7
Re: Epidemiology of childhood cancer??

I too have spent many moments wondering why. Is it something I did when I was pregnant? Environmental factors? Genetically modified foods? Living too close to a power line? We live in the country and all of our neighbors use pesticides - could it be that? As far as I know Alex hasn't been exposed to any more or less than my other kids. The sh***y fact of it is that we can't protect our kids from everything. I think that when doctors don't know the answer they tend to try to avoid the subject. The thing of it is is that no one knows. For sure our environment, foods and such are factors. I think that I finally came to the realization that there is no way - in todays technology - that I will ever know exactly what caused Alex to have leukemia. The human body is still a mystery - perhaps it was never meant to be figured out completely. Almost every day in the news they find another cause of some sort of cancer.

I am not meaning to sound like I am saying "oh well or there isn't anything I can do about it" nor am I saying that people shouldn't try to figure it out

but quite frankly the the reason WHY robs me of my energy that is better spent elsewhere. Like trying to figure out how to keep my organic garden from being sprayed by the neighbors crop dusters this summer or trying to make changes in our eating habits or..... The list goes on and on.

hero4   180 posts since
Apr 4, 2009
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5. Apr 14, 2009 12:52 PM in response to: momof7
Re: Epidemiology of childhood cancer??

Sure thing:

 

http://http://blood-related.org/community/index.php?board=2.0

 

If it doesn't work - let me know!

Fontenrose   187 posts since
Apr 3, 2009
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6. Apr 14, 2009 1:57 PM in response to: momof7
Re: Epidemiology of childhood cancer??

The huge spike in the incidence of leukemia around age three might be the result of genetic (cytogenic) issues. But I tend to like the 'perfect story' theory, where the body just once misses killing the random cancer cells that it would normally clear out. Once they reach a certain threshold, the body just can't get them all.

 

My son, 16 at diagnosis, was tested on Friday after four days of a bad flu. For my part, I wonder if the flu could have made him unable to clear out the cancer cells. Could it have happened that fast?

StillSarah'sMom   35 posts since
Apr 6, 2009
Currently Being Moderated
7. Apr 14, 2009 2:05 PM in response to: momof7
Re: Epidemiology of childhood cancer??

In our case our daughter was 12 when dx, so I don't worry too much over what I did while pregnant.  I do know that I was much more health conscious during my pregnancy with her than I was with my son, who is 31 and doing just fine

I have seen many children that are dx after being very healthy, which was true in my daughter's case as well.  Except a nasty round of ear infections between her 1st and 2nd birthdays she was incredibly healthy.  No other children in our neighborhood (and few adults) in our neighborhood have been dx w/cancer.  We never used poisons or toxic cleaners, I breast fed and we eat organic, for the most part.

At the risk of sounding like a complete fruitcake,  (and some of the 'oldies' here know this story) her problems seemed to stem from a serious dog bite she got when she was 9.  She was bitten in the lower back by a pit bull and the dog's tooth went into the back of her hip bone right to (and into) the marrow.  Within 6 months she was dx'd with idiopathic hypereosinophilia, a very rare condition where the body's eosinophils go nuts and start attacking the body.  Her white cells were 40% eos, symptoms were high fevers, severe joint and bone pain that moved around-sound familiar?  The docs did a bma to rule out leukemia before they started treating her with high dose steroids, gleevec and interferon alpha.  These drugs were never entirely successful in controlling her condition. About a (very long!) year and a half later she was dx'd with pre-b ALL.  Interestingly enough, the chemo took care of both the ALL and the hypereos. so we were doubly blessed/lucky. 

I realize that this is an extreme and very weird case, and I have no idea if it helps anyone, but I thought I'd put it out here anyway.  If nothing else, it shows that every child's case is unique! 

Patty  mom to Sarah, dx 1/04 hr ALL, OT 8/06 and doing great!

Dave Kaat   9 posts since
Apr 9, 2009
Currently Being Moderated
8. Apr 14, 2009 4:23 PM in response to: StillSarah'sMom
Re: Epidemiology of childhood cancer??

Hello!

 

Thanks mom. I thought we were busy with 5

Here's my technical take on this emotional topic.

 

So I think the topic of Epigenetics has a bearing on childhood cancer.

And the fact that you can pass on an environment conducive to mutations without being the origin of the mutation.  Theoretically the parents or the grandparents could be the origin of the "presentation" of the genes without actually passing on mutated genes.

 

Epigenetics deals with the presentation of genes - which structure is "heritable" from generation to generation even IF there are no mutations.  That means toxicity from an earlier exposure can "degrade" the epigenetic status - resulting in a "signaling environment" that is conducive to the survival of mutations.  Mutations that can themselves direct further epigenetic "modifications" to support their own survival (a downward spiral of malignancy).

 

So the maligancy of cancer is directly related to supporting genetic AND epigenetic problems.

For example - mutations could normally be trying to shut down the cells (apoptosis) but because of epigenetic issues, the cells refuse to listen.

Also - mutations could be driving growth - but because of epigenetic issues, the cells refuse to differentiate.

 

The key word relating to this topic, I think, is "heritable".  Heritable from earlier to later life.  And also theoretically heritable from parents to children.  In other words even if teenage smokers avoided cancer, they could still pass on poor epigenetic structure to their children ...that would increase the risk of mutations surviving and becoming malignant.

 

Could that mean cancer risk would grow over multiple generations of poor diet / toxic environment?  I think so.

 

The good news is, that with epigenetic therapy (things like Green Tea, Curcumin, etc.) the cellular signaling environment that supported the genetic mutations can be adjusted, supporting normal apoptosis and/or differentation, and also sensitising the cells to chemo, radiation, and/or immunology.

 

See studies:

http://www.ncbi.nlm.nih.gov/pubmed/16563357

http://www.ncbi.nlm.nih.gov/pubmed/17570133

http://www.ncbi.nlm.nih.gov/pubmed/18199978

 

Sorry to jump in with a lecture ...couldn't help myself

(the "man" thing you know)

 

In the end - you deal with the genetic (or epigenetic) structure you are born with.  But there are common sense dietary things you can do to guard against cancer.  And that's not some wacko-health-salesman saying that.  See study above.  That's M.D. Anderson.

 

...Dave

Annieo   28 posts since
Apr 9, 2009
Currently Being Moderated
9. Apr 14, 2009 3:42 PM in response to: momof7
Re: Epidemiology of childhood cancer??

My son has Down syndrome and kids with DS are 10 to 20 times more likely to develop leukemia (but less likely to develop solid tumors).  To me this says there is definitely a genetic component.  I have come to the conclusion (after very limited research!!!) that some children are genetically predisposed to leukemia, either through obvious genetice differences like Down syndrome or a less obvious genetic hiccup, that is triggered by a virus or some other environmental factor.  In my son's case he was sick with a virus about four months before diagnosis.  He continued to be sick with various things for that four months and when I asked the onc at diagnosis how long he thought my son had had leukemia he said about four months.  We all had the same virus and my youngest was sick enough that he was hospitalized, but only my son with Down syndrome developed leukemia.

Dave Kaat   9 posts since
Apr 9, 2009
Currently Being Moderated
10. Apr 14, 2009 3:49 PM in response to: Annieo
Re: Epidemiology of childhood cancer??

I wonder if it would be possible when relapse (or first diagnosis) corresponds to an illness

...that your immune system was already (successfully) keeping the cancer at bay until it got overloaded by the illness, and consequently the tumor load became too great for the immune system to handle.

hero4   180 posts since
Apr 4, 2009
Currently Being Moderated
12. Apr 14, 2009 4:37 PM in response to: momof7
Re: Epidemiology of childhood cancer??

My son was not ill at the time of diagnosis, but did present with his symptoms 10 days post his MMR (live) vaccine.  Obviously, that is three major viral illnesses being placed on their bodies at once with a lot of work for the immune system to handle.  Although the docs don't agree, I can't seem to get that out of my mind.  I don't think the MMR vax caused it and I'll stress that over and over again, but I do believe there were dormant leukemic cells in the marrow and with his immune system fighting off the MMR, it gave the leukemic cells a chance to mulitiply.  My opinion, but makes sense!

 

Also, when you mentioned that your child was never sick before, I hear that quite often and that may mean an immature immune system.  I kept my son very protective from germs in his 13 months before diagnosis and this may have something to do with the fact that his immune system was so immature that it couldn't handle both the MMR and the leukemic cells at the same time.  There was a study done that does indicate that kids exposed to more germs from birth on have a less likely chance of developing leukemia (don't know how true that is), and they base that on the fact that their immune systems become more "mature" and are able to handle more things....food for thought!

Brandi2020   45 posts since
Apr 3, 2009
Currently Being Moderated
13. Apr 14, 2009 4:50 PM in response to: momof7
Re: Epidemiology of childhood cancer??

I drive myself batty with this even though every doctor you come in contact with assures you it is not your fault and a cause is unkown.  My daughter was sick at the time of diagnosis with an upper respiratory and ear infection.  She never seemed to get over either infection and then became very pale and didn't play a lot.  I took her back to the doctor to see if the infections weren't responding to medicine and the next thing I remember is a phone call telling us to go straight to the hospital.  Her labs were very wrong.

 

I read somewhere (and I can't remember where now - information overload) that developed countries seem to have a higher rate of leukemia.  This line of thinking seemed to believe that with less of an exposure to germs, the less your immune systems kicks in, which makes it weaker actually.  I wondered about this because my daughter has been on prophylactic antibiotics for most of her 3 1/2 years due to high grade bladder reflux on both sides of her bladder.  Of course that makes me wonder about the regular VCUG's she has had to watch the reflux and what the radiation could have down.  She had her first x-ray at 3 months.  Ah, the things your mind comes up with at three in the morning, huh?

Dave Kaat   9 posts since
Apr 9, 2009
Currently Being Moderated
14. Apr 14, 2009 4:56 PM in response to: hero4
Re: Epidemiology of childhood cancer??

Sure.  Our son Jaymun's relapse last year came shortly after his vaccinations, several ear infections, and bronchitis.

So I think his immune system was overburdened.

 

Also there are studies that show breastfed infants are at less risk for leukemia ...and it's common knowledge that breastfed infants have a boosted immune system.  A good part of that is the enhanced intestinal flora (a good part of your immune system is symbiotic with healthy intestinal flora).

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