8 replies to this topic

[missjoy]

Hi,

 

During TKI treatment, if the WBC and Plt are normal, HGB dropped below the normal range, Uric acid was up slight above the normal range, should I be concerned? Although the doctor didn't say it was a problem, I still wonder if they are side effects of TKI or something else?

[Trey]

From that small amount of information, no.

[Trey]

We are all very interested in your child's progress and we will help all we can.  Most information relevant to adults applies also to children.  The exception is children should generally take lower dosage until they reach teenage years. 

 

Almost all CML patients experience high and low blood counts of various types.  A good rule is that if they are barely high or low, then that is usually OK.  Children also have different "normal" counts than adults.  Uric acid may be higher since children are usually far more active and change over cells of all types more quickly.  Uric acid is mostly dying cells, which is normal since all people expend billions and billions of cells every day, but children usually expend more per body weight. 

 

Low and high blood counts are often caused by the TKI drugs.  The drugs are not perfect, so they have some unintended side effects.  Low HGB is a problem for many CML patients.  Overall if the issues you cited are the most significant then there is no reason to worry. 

[gerry]

Hi Trey

Missjoy's boy might be a bit older than you're expecting, I think he is now married.

Your children are always your children no matter how old they get.

[gerry]

Hi missjoy,

 

Hopefully as your son progresses and his CML gets under control, he becomes more positive and his wedding is only postponed. 

[mlk210]

Hi Missjoy,

 

It's hard being a family member too, especially a parent. Although, I'm 38, my mom comes to almost every appointment with me along with my husband. I always joke that I have an entourage with me because sometimes my dad will come too. I see my parent's faces and know they wish they could take this disease from me, and I understand because I'm a mother and would feel the same way.  I think it's great that you are on this forum, asking questions and reading things to help your son through this. I'm just shy of 6 months into this diagnosis, and it's nice to have such a support system behind me.  

[Trey]

Many patients here take various dosage of all the drugs, so the dosage certainly can be adjusted.  Often this is to reduce side effects.  A steady, lower dosage is often better than continuous interruptions of higher dosage.  Over a period of many years some patients reduce the dosage, and some have tried stopping the drugs after about 2 years PCRU with mixed success. 

[hannibellemo]

Mlk210 and missjoy,

 

My mom died almost 30 years ago and I am a competent adult in most areas of my life, yet when I was diagnosed at 58 my first thought was, "Damn, I wish my mother was here, she'd know what to do".

 

missjoy, your child is lucky to have you, and yes, they are always our "children" no matter how old they get. I know I don't need to tell you how lucky you are, mlk210, to have your entourage. I'd give almost anything to have mine back!  

[Trey]

MJ

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