4 replies to this topic

[Taylor]

Does anyone know what blood count is required to cause symptoms at a minimum, or how long it takes for blood counts to get high?

I'm not sure if there is a way to know but I am trying to trace the development of my symptoms.  I was dx in Jan 2011 at 230k WBC.  In late May 2010 I had the first blind spot occur in my eye.  But in something around December 2009 I began to get frequent nosebleeds when I woke up.  All things in my life being equal at that time, I'm really wondering if that was caused by elevated blood counts.

Taylor

[ritan/]

i've heard somewhere that it takes about a year for WBCs to go up 100,000. (i've no idea if that's correct) but i've concluded that i probably starting having symptoms close to 4 years before i was diagnosed with a WBC 360,000. in particular i starting having odd hot flashes and odd infections. i had obvious symptoms for close to year (in particular i lost about 75 pounds in a year--i was trying to lose weight so i didn't really identify it as a symptom). and my spleen was undoubtedly enlarged for months. (i remember sitting up in the bath and seeing this odd line down the middle of my abdomen. eventually i realized that was my spleen--by the time of diagnosis my spleen extended to the bottom of my pelvis and several inches on the right side of my naval.

[Trey]

In my case I had a CBC 1 year prior to diagnosis which showed normal WBC and platelets at 1 million (CBC was not read by the ER doc who ordered it, so this was missed at the time).  High platelets can be an early sign of CML for some, but others can start with low platelets.  So for me the CML began well more than 1 year before my diagnosis.  The incubation process could be many years for some, or a shorter time for others.  We are all different.  But it generally takes a while due to the slow initial divisions at the stem cell level.  Possibly the initial translocated leukemic stem cell could go into an immediate extended quiescence before starting the dividing process, so that could be a year or even much longer if that happens (speculation).  Once the mid-level progenitor cells become populated with leukemic cells the process accelerates rapidly, so WBC is not a good indicator of the timeline.  Once the CML gets going, a person could be 100K WBC then 300K WBC in a rather short time.

In your case, from the Dec 2009 to Jan 2011 is only 14 months, so you very likely had CML in Dec 2009.  At that early point if WBC is normal there could be low level symptoms such as bleeding, easy bruising, petechiae, hot flashes for men and women, and other symptoms that would not immediately cause one to suspect leukemia. 

[Tedsey]

The CML was caught at my yearly exam.  I had a 20lb weight loss out of nowhere  3 years prior.  Went to 3 different docs, had CBCs, nothing came up.  Had a baby and then was on watch the year before dx because of a surgical error made during a c-section.  My CBC 8 months before the dx was normal.  At dx, my WBC were 180,000 and my PLT were just above 600,000.  My spleen had blown up about a couple weeks before my check up, so I tried to get into the doctor quicker.  I did not have any other symptoms, such as, bruising, bleeding, fatigue and night sweats, etc.  I even healed quickly and well from the 4 hour surgery about a year before.  Go figure.  Guess the dastardly stem cell was just waiting for a good time to strike in full (my husband blames it on the surgical error and I like to blame the mutation on being put under a very huge, loud, and prehistoric x-ray machine to check for any surgical instruments left inside me after they closed me up).  Maybe not the cause, but it feels better to have something to blame.  

Take care Taylor.  I hope you are doing great now.  Have a great holiday.

Tedsey 

[janne]

Tedsey,
Prehistoric x-ray machine...hmmmm...I think I will blame that one too....you are right. it does feel better to blame something ...!