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CML & Mouth Problems

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#1 dawnhan


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Posted 17 January 2011 - 11:15 AM

Diagnosed with CML in June; on Gleevec since July, 2010.

I've had a series of side effects, the latest being the swelling of my lips and inside of my mouth.  The corners of my mouth first tore and now are ulcerous.  My tonsils are inflamed.  All these started in early December.  I've been having difficulty putting food in my mouth (temperature and food texture a big concern) and the swelling of one of the cheeks comes with much pain that seemed to be from the glands near my gum.

My hematologist said these have nothing to do with my CML or Gleevec.  My family doctor ran a few tests but couldn't diagnose the problems, so he couldn't refer me to any specialist.

Has anyone had any similar problems?

#2 scuba


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Posted 17 January 2011 - 11:27 AM

Have your Neutrophil level checked.  Neutrophils are the front line defenders along all mucous membranes in the body - especially the mouth.

They are constantly protecting against bacteria and preserve normal cell integrity.

When Neutrophils are low, the body can't defend adequately against mouth bacteria and 'ulcers', rips, and other problems in the mouth develop.  It is an early warning sign you have a problem.  Left unchecked - this can lead to more serious bacterial problems such as Sepsis.

I had to get off Gleevec because of this and developed pretty much what you have now.  It cleared up quickly as my Neutrophils were allowed to recover.

In the mean time, switch to a non-laurel sulphate toothpaste (Biotene) and do not eat anything spicy that will damage the mucous lining.  Avoid alcohol mouth washes (and alcohol in general - which I didn't do because wine is life and paid a short term price - all better now).

If you develop any kind of fever - go to the emergency room.

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 everonward


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Posted 17 January 2011 - 11:35 AM

Hi Dawnha

Has your doctor checked your vitamin B12 levels  cracked lips, sore mouth and tongue are all symptoms of a deficiency.


I have had to have B12 shots in the past as Glivec does affect it.


#4 jrsboo


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Posted 17 January 2011 - 01:01 PM

I don't have the problems that you are having, but have had tongue lesions since day one of TKI (Sprycel).  I finally asked to see an Oral Medicine Dr. at the Cancer Center for a consult, and she was wonderful.  They ran a swab for fungal infections and also gave me a prescription for Magic Mouthwash for deadening the pain. 

If I understood her correctly, the mouth's lining is completely renewed every two weeks, but with the TKI's there may be some areas that do not regenerate properly.

I guess I am saying that you should see an Dentist that has experience with chemotherapy patients to get the best answer......


#5 dawnhan


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Posted 19 January 2011 - 12:27 AM

Thank you, thank you all for your input.  I did get a vitamin B shot, which didn't help at all.  I've stopped using toothpaste when I brush my teeth, and I'm certainly not eating spicy food (eating itself is just a challenge).  Since it's been 1.5+ month, I will talk to my doctor about getting off Gleevec.

I want to let you know how grateful I am for your feedback.  My doctors and loved ones are at a loss over my problems and the pain I've been going through.

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