How long does CML linger before showing itself?

That’s a million dollar / pound / euro question!

None of us really know how or when we got CML. Some people have suspicions, but most of us have no idea.

David.

Cancer - all cancer - is a failure of our immune system. We generate cancerous cells all of the time. These very cells are quite capable of rapidly dividing in order to create a metastatic solid tumor or leukemia. The interesting fact is most are killed or die on their own. And the reason this is so is because in order for a cancer to get a foothold there needs to be a lot of them created at one time, which together, put out enough cancer proteins which tell the immune system to 'stand down' and not attack. One or two or a thousand cancer cells are not enough to sustain - the immune system does it's job.

But - when a cancer cell is created in huge numbers at one time - as in radiation exposure (cat scan!) or repeated high exposures of a carcinogenic agent, there may indeed be enough cells mutated into cancer cells at one shot so that the immune system is overwhelmed and cancer becomes established. And then there is always genetic pre-disposition.

It's interesting, however, that even with radiation or carcinogenic exposure, most people still don't get cancer. It is probably because other systems of the body (gene activation and related) are also at work in addition to the immune system to shut the cancer down (cause cancer cell apoptosis or even quiesescence).

For us who developed CML - it probably took many years of 'smoldering' around where cells grow, fall back, grow and fall back before a critical point where the immune system gets overwhelmed and we have breakout. Once established, only drugs can help bring it back into control (our TKI's, thankfully). Unfortunately, our drugs kill offspring cells not the original leukemic stem cell population that is quiescent (non-dividing). Over time, however, there is evidence that the LSC population gets smaller and smaller and when small enough - treatment free remission is indeed possible (functional cure). LSC's are killed by TKI's when they divide (hence my testing of fasting which forces LSC division). When LSC numbers are small enough and they are no longer putting out enough protein to safe-guard them from our immune system to stand down - our immune system may be able to get the upper hand (but only if the immune system no longer remembers that the cancer cell is not "normal")

For me - I feel I had the perfect storm which established CML. My vitamin D level was incredibly low (< 17 ng/ml) which I did not know at the time. I had numerous CT-scans to verify a benign condition. So I had a weakened immune system and I no doubt generated a boat load of new CML cancer stem cells which had a field day. CT-scans done in 2003 - CML diagnosis 2010. Seven years of smoldering before breakout. Makes perfect sense to me. Add to that the bcr-abl translocation is so easy to do (the two chromosomes 9 and 22 are tightly bound around each other right at the breakpoint.)

Keep in mind - your spleen is trying like crazy to keep the extra cells in check. This probably explains two years of me not quite feeling right before diagnosis, but white cell counts not explosive yet.

Thank you, Scuba, what a wonderful posting! This is highly considered and has helped me tremendously. It does indeed seem that the disease can lurk for quite some time and that identifying a CML birth day is near on impossible.

For my part, I cannot really think of the trigger. I did work in my earlier days in a radio laboratory and I sat in an office for some years beneath an enormous microwave radio tower but all of this was long ago. More recently, I have spent some years swimming in a bromine treated pool.

Thank you, David.

As as a newcomer, these postings are all very helpful to me.

Whatever the maturation period is prior to diagnosis, it appears that most CML appearances are very treatable. It may be an earlier diagnosis would not help a great deal.

I was diagnosed in Sept 2016.  I had recently returned home to FL from a 3 month trip through Eastern Canada and NE US.  I noticed a bit of fatigue towards the end of walking 18 holes of golf, but wrote it off to being way from FL's  miserably hot and humid summer season.  And then a swollen lymph node appeared on my left neck and my wife insisted I go see the doc.  He thought it was a localized infection and he prescribed antibiotics and drew blood.  The next day he called me and said I needed to see a hematologist asap.  3 days later I was Dx'ed with CML.  By the way, the swollen lymph node turned out to be benign and had nothing to do with CML or at least that was what I was told.  WBC was 29,000, platelets were 750 and blasts were 4%.

I have had what I would think was typical amount of Xrays over the years and probably 4-5 CT scans, the last being done as part of my CML Dx to rule out lymphoma and any other solid tumors.  I grew up in a house that had excessive radon gas levels in the basement but this was at a time (1960's and 1970's) when basements were not checked for radon, so we had no idea until my parents sold the house in 2012 and the test was done.  I spent countless hours in this basement, so is this where I first acquired the p210 translocation? Like all others have said, who knows, but I'd bet that was the cause.