12 replies to this topic

[SunNsand]

   I know there is no solid answer but I can't help thinking about this. I'm a curious person.  For example, take a person found with 100,000 WBC in chronic stage at dx. Next week the WBC are 2,000 higher. Can this be solved with math? Does the WBC multiply at the same rate in everyone? I don't think I am explaining this very well because I can't really straightened it out in my head (extreme brain fog) and I do have an allergy to difficult math lol, but my hubby is a math wiz. Thank God one of us is. Any thoughts?

SunNsand

[Trey]

Hard to say.  The math is difficult because it is not linear and there are many variables.

In my case, a CBC test showed my platelets were 1 million a year before I was diagnosed with CML, 100K WBC.  The CBC was never read by the doctor (emergency room) so it was missed.  The high platelets are one of the early signs of CML developing for most people.  So the CML had to start much earlier.  Possibly it started a couple or three years before diagnosis.  Others may progress faster to the symptoms that lead to diagnosis.

[SunNsand]

Thank you Trey for your thoughts. I suspect I've had it for a few yrs. also before dx.

I was hoping I could hand my hubby an impressive looking math problem for him to do. He had a cycling accident and is home with a broken pelvis and he is bored to death. Darn! hehe

SunNsand

[les6693]

My onc assumes that I had CML approx a year and 1/2 before I was diagnosed due to the fact my primary care dr. ran a cbc on me March 2009 and at that time my wbc was 18000.00    Long story short, but she didn't do anything about the 18000 count.. Just said my body must have been fighting off an infection of some sort and gave me a prescription.    I had gone in because I had told her that I was getting a headache every single day and that I just didn't feel good.. I felt ran down..      so of course, now the light bulb goes off that I should have had her follow up more, etc..

My WBC at diagnosis was 267000.00   1 year and 2 months later.

So who knows how long it was that it took my WBC to get to 180000 prior to then.  All I know is it took 1 year and 2 month to go from 180000 to 267000 and that is crazy.

[Marnie]

I wish there was a formula.  I'm convinced that I had been walking around with cml for 3 years before diagnosis.  That's when I started having SEVERE night sweats.  I just thought it was early. . .really, really early menopause.  My doc won't even make a guess as to the time of onset.  My counts were 265,000 at diagnosis (actually a little lower than that, and went up to that a couple of weeks later).

I hadn't had any blood tests for quite awhile before diagnosis, so no way of knowing.  Trey's case is pretty interesting. . if I remember right, he was able to go back and almost pinpoint the time of onset due to a fluke in lab reports.

Marnie

[Tedsey]

In February or March of 2009 I had an EKG and a CBC for insurance purposes.  I had just had a baby and a c-section a few months before the insurance CBC and everything came out normal.  In November 2009, my spleen swelled.  Went in for my yearly physical 3 weeks later.  My WBC was 180,000.  I had a lot of CBCs spanning three years before dx because of having 2 babies and 2 c-sections (within 3 years).  If there was a problem, I would have probably heard about it.  I also ran to a gastro doc twice for extreme weightloss.  Otherwise, I had no night sweats, bone pain, felt tired or sick, or any other typical symptoms.  Don't know if this helps.  It is quite possible no one looked at anything.  Who knows?  I am sure the life insurance did.  We should have taken more out on me instead of my husband.

[everonward]

I asked my Onc this question adn he said it was impossible to tell but that I had probably had the CML for around a year and a half. This would tie in with a very nasty virus I had at a stressful time of exams. Whether the CML was kick started by the flu virus coupled with stress who knows.  I tend not to worry about it now - I can't go back and change it - as much as I'd like to.

Marianx

[Tim76]

I was Dx'ed in March, 2006. For 10 years before that, I would have a very good annual physical in July each year with very extensive bloodwork. Everything was always normal. In October, 2004, I developed acute pancreatitus. The surgeon that cared for me was tracking a cyst that developed on my pancreus. While in the hospital, I must have had 4-5 CAT scans in about three weeks. After discharge, I had monthly scans until late 2005. At that time, he decided to go in and resolve the cyst. When they did the pre-surgery CBC, my WBC was over 35K. He canceled the surgery and come immediately to the hospital for a BMB. So, I'm guessing it started after one of the CATscans.

[CallMeLucky]

My first Onc speculated that I was "probably only sick for a few months" before my dx.  I was dx this past June 35K WBC all other counts normal, just happened to go for my annual physical.  I had a CBC last June and everything was fine and I had a lot of blood work done in 2008 when I had Ebstein Barr virus. 

I have a theory that the virus may have caused my CML, but that would mean it stewed for a while before showing any signs so maybe it didn't.  Leading up to Dx my counts were 35k then a week later 55K then a week later 68K, then they dropped to 64K a few days later, platelets stayed normal.  My FISH was 100%.

So who knows how long it was brewing.  A few months before Dx I also started an intensive exercise program.  I would hate to think trying to get myself in shape led to my cancer, my Dr says absolutely not.

Another interesting thing my doctor said was that they had a patient who was diagnosed with CML, I forget the exact circumstances, but in this particular case they had blood stored for the individual from a year earlier when he was going to donate for something.  They went back and checked his blood, his counts at the time were normal but when they did either a FISH or a PCR, they did in fact find PH+.

The fact is they don't know what causes it or how long it builds up before it shows signs.

[ROM1212]

Hey Trey,

Was your WBC count of 100K at the time of the CBC, or at the time of diagnosis?  Just wondering if you were diagnosed in chronic or some other stage.

This discussion is fascinating to me.  If it is proven one can be PH+ without an unusual CBC, is it accurate to say we could be born with this (ahem) defect?  Suppose it lingers around, normally suppressed by its own inherent weakness, until our immune system becomes compromised (virus, radiation, stress, etc.) in a way to promote its growth?

Thanks.

[MJL]

I think we walk around with it for quite some time before we are diagnosed. I was fatigued for several years before diagnosis, but attributed it to my medication, menopause, and the Diabetes and  that was discovered in 1995. I would come home from work at lunch time and set my alarm for an hour long nap. And yes I had annual physicals with a CBC. My white count finally did skyrocket and was discovered when I went to the Doctor for what turned out to be bone pain. I was diagnosed with CML in May of 2009.

MJL.

[Trey]

ROM,

It was at diagnosis.  Practically impossible to have it from birth unless someone is diagnosed at about age 2 - 3.

[td1961]

Poll Qustion: Who on the board had the highest WBC at dianosis? Winner gets a pig in a poke. Har! Mine was over 650K. I was probably sick for several years prior to being diagnosed. Some primary care docs should remember that CBCs are fast, cheap and a very important part of any physical! My retinopathy finally got me recognized. Regards, Tracy