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What caused your CML?

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I have only been able to find one known cause of CML - excess exposure to radiation.  It is not hereditary.  I smoked for 25 years, but this has also not been linked to CML from what I have read.

When I was 10 years old in 1963, my family moved to a house outside Philadelphia PA. I lived in that house until I finished college in 1976.  During my teen years, I spent a lot of time in the basement, first remodeling it and then playing pool and ping pong.  When my parents sold this house in 2012, the radon gas inspection was positive (they didn't do this inspection in 1963). Could exposure to this radon gas have caused my CML?  Neither of my parents got CML but neither of them spent much time at all in the basement - my father died of natural causes at age 91 and my mother just celebrated her 99th birthday cancer free her entire life.

If this didn't cause my CML, what did?  What caused your CML?

Chaos Theory. The same thing that will deiced whether the coin
will land head or tails. Why are some people are born pretty and smart
and other people born not pretty or smart. With CML. Like me.

Romo

I agree with Romo.  It's my understanding that the radiation link is based on Nagasaki and Hiroshima, in which the levels of radiation involved would have been orders of magnitude greater than any exposure to Radon in a domestic setting.  Those two events are the only time I believe that any link to any cause has been identified.  Otherwise, it's random change associated with the inherent uncertainties in DNA replication. That's my understanding anyway.  My consultant thinks most people have some level of the PH chromosome somewhere but they don't know why it becomes rather more than that in CML patients. 

I believe radiation (from CT-scans) coupled with very low vitamin D (so I had not defense at the initial stem cell bcr-abl mutation) caused my CML.

http://pubs.rsna.org/doi/full/10.1148/radiol.12121248

https://www.health.harvard.edu/staying-healthy/do-ct-scans-cause-cancer

I will NEVER have a CT-scan taken again. Ever.

About 5 years before my CML diagnosis, I had a series of CT-scans around my hip area (big blood forming area). I have little doubt this triggered start of CML. For healthy immune systems, most people's T-cells simply wipe out the mutation naturally (bcr-abl translocation is common and never progresses or becomes detectable). In my case - since my vitamin D was also very low (unknown to me at the time) , I had no defense. CML left the gate.

That's my theory for myself. I have been spending the last 8 years putting my CML genie back in its box. My vitamin D level is now very strong (kept at the high normal level) and my immune system overall is greatly strengthened. As CML stem cells get whittled away (using fasting as one method), eventually the stem cell population will be below a critical threshold amount needed to maintain T-cell defense (CML cells put out cytokines to tell our immune system to stand down, but many cells are needed for that). In this way, my CML stem cell population will be eradicated naturally. Much of it is probably gone already.

I am currently PCRU while taking only 20 mg Sprycel. I have a year or less to go after which I will go off drug and test "treatment free remission".

It is my hope that I will be off drug for good (functional cure). I will keep you all posted on my journey as I do this.

cmljax - I think your radon theory is eminently plausible.

My CML was caused by my service at Camp Lejeune after enlisting in the Marine Corps. 

I've enclosed an article which explains the issue.

https://www.blogs.va.gov/VAntage/35977/vas-rule-establishes-presumption-...

I really do not believe there was enough publicity around this disaster which covered years between 1953 and 1987, so anyone who served at Camp Lejeune during this period and has had the misfortune of being diagnosed with any of these presumptive illnesses should contact the VA.

We did extensive research after being diagnosed, and most doctors said a cause could not be determined but we came across a Marine Corps Toxic Water Registry at Camp Lejeune which led to a protracted claim process with the VA. Once the new law was passed in March 2017, the VA was extremely helpful.

 

 

Your post triggered a memory bud in my head.
See included article. Very interesting!

http://oc.itgo.com/kitsap/high.htm

 

Romo

I have no idea what caused mine. We also live in a high-radon area but our home has a radon reduction system that seems to work.

We can be very grateful for all the cancer research that has helped us so much, but it would be great if more work could be done on WHY? There must be a lot of data in the US cancer registry, and I assume other countries have similar data. It would not be difficult to crunch the information and find similarities -- would it? If CML could be prevented rather than treated, wouldn't that be something!?

Very informative article. Sad but unfortunately not surprising.  

It wasn't until 2012 that the VA offered free medical to veterans for illnesses caused by the toxic water contamination. Prior to that, various "scientific" studies were issued saying that there was not enough scientific evidence to support a presumptive cause and effect. The contamination started in 1953.

Here'a another looming disaster for veterans.

https://www.publichealth.va.gov/exposures/camp-lejeune/

 

 

From the article: "We were exposed to heavy exhaust fumes. Most vehicles were operated and serviced inside of our building without being connected to the external ventilation system. Another problem like this is the main engineering building (known as Building 850, The Henry Jackson Engineering Building) air intake is from the carport at the front entrance."

 

Perhaps the high incidence of CML was caused by exposure to benzene coupled with low vitamin D levels?

Hi Scuba,

I know this is an old post but I came across this website which can give an idea as to how radiation one would receive using different procedures .

https://www.omnicalculator.com/health/medical-radiation

as well as another site which provides an insight into toxic household cleaning products ...

https://www.cbsnews.com/pictures/ewgs-hall-of-shame-of-toxic-household-c...

May be this will help others reading this post :)

God bless ...