12 replies to this topic

[Goldfinger]

When I was admitted to the hospital in December of 2009, my wbc count was 498,000. I was burning up but hated hospitals so I avoided going until the last minute.

Anyway, I was wondering if someone could tell by looking at the 498,000 wbc count and estimate roughly when I developed CML. How fast does the wbc count go up without treatment on a monthly basis?

Anyone have any opinions?

[ROMO]

It's a rolling snow ball. The longer you go without treatment

or diagnosis the faster the Leukemia cells increases. Because they don't

die a normal white blood cell life span. They live much longer.

I had a CBC about two years before I got my diagnosis and the

numbers were normal. 2 years later I was at 160k.

The interesting thing was I had a blood count about three months

before my 160k count that was missed. In looking back it was at 114K

So it grew 46K in a little over 3 months. It was speeding up.

It was missed because the DR moved to a different state and the practice

was bought by a hospital and I was there for other stuff. So it fell through

the shuffle. No harm done.

 

But if I was a guessing man I would say about 3 years.

I heard of a person that had a count over 700k. That's a lot of blood to

pump through the vaines. They claim you can hear it pumping through

the vaines when it's real high like that. Sounds like somebody is walking

around inside your head in a pair of slippers. I believe the 700K guy lived

and had little symptoms. The Docs wondered why he was still walking and

talking.

 

I'm sure ultimately it is patient specific.

 

Romo

[Trey]

Hard to say, but likely about three years for you.  I had the misfortune of ending up in the Emergency Room (unrelated to CML) a year before CML diagnosis.  That CBC was not read at the time.  One year later I was diagnosed with CML.  Looking back at the CBC from a year earlier it showed 1 million Platelets but normal WBC.  The high PLT is often one of the earliest indicators of CML (but can be other diseases).  So I know by factual information that my diagnosis was one year from having 1 million PLT count, and that likely took about 6 - 12 months to develop (just a guess, maybe longer).  At diagnosis a year later my WBC was 100,000.  Someone with almost 500,000 WBC likely was farther along than I was, but it would not be linear.  So a guess might be three years from the initial t(9;22) translocation until diagnosis for you.  Just guessing.

[r06ue1]

I was diagnosed at 375k, a year earlier my doctor said my WBC count was a little high (routine visit, we thought it was just a cold).  It probably develops at different speeds for different individuals but looks like most cases take a year or longer before it can be diagnosed.  

[rcase13]

So, just curious if your currently PCRU and stopped taking the medicine how long before CML came back and eventually killed us? This assumes the cancer came back and cessation failed.

[garfonzo]

Hello I had a WBC of 550k+ at diagnosis. 2 years prior it was normal. 1 year prior at my yearly exam I wasn't able to get my blood pulled because the tech was out. I was instructed to return the next day. Next day again the tech was out.
Stupid me said screw it, I'm busy, and never returned to get the blood pulled that year.
Oh what I would give to go back in time. I'm sure something would have shown up 1 year prior to a 550k count.
Never ever skip a yearly blood test all you healthy folks.

[Goldfinger]

Thanks for the replies everyone.

It's kind of weird not knowing you were walking around with CML for possibly years without even knowing it. I was burning up and had serious issues breathing which developed in the last two or three months. My hatred of hospitals and no insurance were the two prime reasons I didn't go sooner.

Went into the emergency room where they ran the blood tests. Transferred me to Siteman Cancer Center here in St Louis. Was put on leukapheresis. Don't remember for how long. In hospital for 11 days and was put on Gleevec when I left. On that for about two or three years then switched to Tasigna and have been on that since. Am doing good under the circumstances.

[mlk210]

I had a blood test six months before diagnosis and it was around 15k. The doctor called and said it could be a cold and to come back in a month. Being a working mom with twins and I was indeed suffering from a cold when they originally called, I never went back for more bloodwork. They called me six months later and said it popped up back in their system that I never went back. Asked if I'd go back to make sure. I still delayed it another two or three weeks because I felt fine. My doctor called me that night after I got my blood drawn and asked for me to get it rechecked in the emergency room, wbc was 106k. 

 

Things I remember feeling and noticing during that six months (who knows if they're even related)

I suffered a horrible sickness that pretty much made me pass out in bed for an entire day, but I did recover.

I remember becoming out of breath by just walking up the stairs to our second floor and thinking I was out of shape.

I remember my stool not being normal but chalked it up to an unhealthy diet. 

The day I got the diagnosis, I remember my feet feeling heavy (I have no idea if that was circulation or what.)

 

It scared me how quickly my wbc's went up. FYI - my platelets were in just above normal range at diagnosis.

[Calvink669]

Mine was 550K when I was diagnosed.  My initial PCR IS% was 175.7% I went back and looked at my records and unfortunately even though i had blood drawn at my yearly checkups they only did a chemistry and lipid panel and not a full CBC so I have no idea how long my WBC had been on the rise.  I am very curious of this myself because there was a point at least 3 years prior that I noticed running stamina take a decline when I hadn't missed any training.  I just attributed it to getting old.  Now I'm beginning to wonder.

[Flex]

I was diagnosed 2 years back. after Blood test for knee swelling, otherwise doing ok. Diagnosed at the threshold of blast crisis. Any how at diagnosis my WBC was 94000 and reduced by 10000 on its own prior to treatment. Reduced to 1500 in 3 weeks on treatment. All other blood work and spleen was normal at diagnosis. MMR at 12 months. BMB at 6 months, no blasts in marrow and 3.8 PCR.
Any correlation between WBC and other blood work regarding disease stage? Becoming rather confused about initial diagnosis.

[thatguy]

I was diagnosed 2 years back. after Blood test for knee swelling, otherwise doing ok. Diagnosed at the threshold of blast crisis. Any how at diagnosis my WBC was 94000 and reduced by 10000 on its own prior to treatment. Reduced to 1500 in 3 weeks on treatment. All other blood work and spleen was normal at diagnosis. MMR at 12 months. BMB at 6 months, no blasts in marrow and 3.8 PCR.
Any correlation between WBC and other blood work regarding disease stage? Becoming rather confused about initial diagnosis.

I'm confused too, Flex. Borderline Blast phase at 94k wbc, with a normal sized spleen? What was your blast count?

[Flex]

I never thought about it much before now, was more focused on getting healthy. I was told by the Onc per his discussion with the pathologist. It was a manual count under the microscope from initial BMB at the hospital. My pcp had me admitted ASAP. 2 days later went home on 600 mg gleevec, was told I won't die from this and back to work. First PCR 4 days later at 48. Had side effects for 3 to 4 months, joint pain which went away and things have been otherwise normal as before. Was steady at PCR .2 to .7 for month 7 to 11 and then .026 at month 12. Steady since, month 24 this Dec.Any way that's my story. Otherwise healthy as a horse. This topic got me thinking along with never being a candidate for drug cessation because of disease stage at diagnosis.

[thatguy]

I never thought about it much before now, was more focused on getting healthy. I was told by the Onc per his discussion with the pathologist. It was a manual count under the microscope from initial BMB at the hospital. My pcp had me admitted ASAP. 2 days later went home on 600 mg gleevec, was told I won't die from this and back to work. First PCR 4 days later at 48. Had side effects for 3 to 4 months, joint pain which went away and things have been otherwise normal as before. Was steady at PCR .2 to .7 for month 7 to 11 and then .026 at month 12. Steady since, month 24 this Dec.Any way that's my story. Otherwise healthy as a horse. This topic got me thinking along with never being a candidate for drug cessation because of disease stage at diagnosis.

It sounds like a misunderstanding somewhere along the line. Given just what you've said, they caught yours fairly early in Chronic Phase.