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Possible CML in teenager

Hi,

I have a couple of questions. My 14 year old son is in the hospital for testing. Today I was told that it is possible that he has a chronic form of leukemia. I had so much info thrown at me that I'm not sure if everything I heard is a fact. He has been sick on and off since August with lung and kidney infections. He is being treated for an infection right now but they are not sure where the infection is coming from. His white count is high. Last time he was sick a couple of months ago it was around 20,000, now it is at 32,000 and they mentioned differrent types of white cells and percentages but I don't know much about that yet and didn't even know there were different kinds of white cells. And they said there were some abnormalities and they were going to do a blood smear.

They are doing a Philadelphia test on him that can rule out the chronic leukemia if he tested negative. I don't know when they are doing the test or if they already have or how long it will take to find out. I was too scared to ask any questions because I'm not sure if I want to know the answers.

So far they have told me not to worry too much but that I should prepare myself just in case. My son only knows that he is really sick but doesn't know anything else yet. They said it is possibly a leukemia reaction that means it isn't cancer and that once they treat what is wrong with him he will go back to normal. For now I'm hoping for that.

Question 1. What is the Philadelphia test and how long does it take to get answers?

Question 2. What is a Leukemia reaction?

Thanks so much,

oasis_black

Hi,

firstly let me say that I totally understand your panic. It is hard to accept that our children might be seriously ill. I hope that the tests your hospital is doing on your son's blood samples prove that there is nothing more serious than a number of infections and that is why his is blood count is higher than normal.

The normal white cell count is between 2.5 and 12. when our body is fighting an infection certain white cells involved in the immune response increase. 

The Philadelphia test you speak of is as follows:

In CML or chronic myeloid leukaemia there is a specific abnormal chromosome called the Philadelphia Chromosome. If the lab finds this in his white cells then they can say for certain that the reason for his raised white cell count is that he has developed CML. 

The raised white cell count is probably what they mean by 'leukaemic reaction'...i.e in all leukaemias cause the white cell count to rise, but the options for therapy depends on what kind of leukaemia it is  i.e Acute (ALL or AML) or Chronic (CML or CLL). 

You have said that the clinic have told you that it might be a chronic form of leukaemia and if so then it will be CML rather than CLL. 

CML is rare.... and in children is ultra rare.

If this is the case then DO NOT PANIC. CML can be treated and very effectively controled by taking a drug in the form of a pill every day.

In fact there are several drugs that all work in the same way to control the disease over the long term and they are highly effective. These drugs are called tyrosine kinase inhibitors or TKi for short. I am not sure where you are based and/or the centre where your son in being treated, but if the test for PH chromosome is positive then it is highly likely that he will be given one of three drugs curently available. 

Glivec (or Gleevec in the US)

Tasigna

Sprycel

Please try not to worry- although I know what a shock this must be for you. If your son has CML then please let us know and we will help you get to grips with all the relevant information and there is an excellent chance that he will respond to therapy.

Sandy