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Low WBC after Gleevec?

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#1 dawnhan


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Posted 19 January 2011 - 03:39 AM

I was diagnosed in 6/10, when my WBC was from 30.6 to 21.5 and then 20.1.  After starting Gleevec on 7/16, I've been pancytopenic (RBC, HCT, MCV, MCH all low), although my platelet is now finally within range.  What really bothers me is my WBC: 11.7 (7/27), 2.1 (8/18), 2.0 (9/20), 2.5 (11/13), 1.8 (11/30), and 2.4 (12/23).  I've had all sorts of problems, the latest being mouth swelling, inflamed tonsils, ulcerous mouth corners and mouth pain inside mouth lining near gum area (can't really eat most things without pain) for 1.5+ month.  My hemat/onc thinks my numbers are okay, but my primary doctor thinks my problems are probably due to my low CBC.  I'm somewhat worried now because the mouth problems may be signs of infection (no chills/fever yet).

My hemat/onc doesn't see a connection between many of my (including the current) problems and Gleeven or CML.  My primary doctor's vitamin b shot and anti-virus medication hasn't helped.

Is what I'm going through similar to any of your experience?  Should I change my onc?

#2 scuba


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Posted 19 January 2011 - 06:45 AM

There is a definite connection between your mouth problems and low WBC's - (actually - low Neutrophils (ANC # < 1.0).  I went through this.

Neutrophils attack bacteria in the mouth (and elsewhere) in huge numbers.  When Neutrophils are low, you are at risk for all kinds of mouth problems.

Assuming your Neutrophil numbers are tolerable so you can stay on Gleevec (which I would not do - I would switch TKI) - then you have to keep your mouth very very clean. 

1.  Use Biotene toothpaste & mouthwash

2.  Absolutely brush and clean your mouth prior to sleep as well as after you eat.

3.  rinse your mouth during the day with saltwater

4.  avoid all foods with spice and pointed texture until ulcers heal.  Soups are your friend.

When my neutrophil count, as measured by ANC,  fell to 0.2 my mouth inflamed (canker sore).  I have never had a canker sore in my life until this.  Not until my ANC went above 0.9 did the sores heal.  And once my ANC was over 1.5 every last vestige cleared up - almost overnight.

Neutrophils are a wonderful thing.

Track your neutrophils - not just overall WBC.  And your Onc doesn't know what he is talking about because he doesn't read.

Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein


Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.


2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"

#3 dawnhan


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Posted 19 January 2011 - 08:00 AM

My ANC was 1.2 (8/18) and 1.3 (12/23).

Not sure if I can easily change doctors--my current onc was referred to by my primary dr and he works in the largest local hemat/onc clinic.  I may have to try to see one of his colleagues.

I don't have cankor sores.  I can quickly brush my teeth as long as I use cold water and no toothpaste.  The swelling and pain interferes with my eating because my lips and mouth lining are very sensitive to temperature and texture of food.

Has anyone just stopped taking G for a week to 10 days?

#4 dawnhan


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Posted 21 January 2011 - 05:27 PM

Thank you, LLS.  I went to a good doctor this morning and got the answer and prescription that I needed:


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