Jump to content


Photo

My 11 year old son has CML

Cml child

  • Please log in to reply
6 replies to this topic

#1 CMLmom

CMLmom

    New Member

  • Members
  • Pip
  • 1 posts

Posted 22 July 2014 - 08:32 PM

Hello

My child was diagnosed about two months ago with CML.
He is currently in the phase II trial of Dasatinib and is doing well so far. I think. His blood counts have normalized. He is having a bone marrow biopsy in three weeks which I guess is when they see if the drug is working .
The doctors keep saying he will probably take this for the rest of his life.
I have a couple of questions:
I don't understand what they get from the bone marrow test?
I need a non technical explanation.

I also am finding it really hard to find children with CML. It is very rare in children so it is hard for me to find specific information regarding children, what happens when they turn into adults. The doctors keep reassuring me that he will keep seeing them long into when he wants to have kids.
I would love to hear from a person who had CML as a child or teen and how they are doing?

I am having a hard time with helping him since I don't know of any other families with this.

I would love to hear from someone who has experienced this, might be on dasatinib, etc.

Sincerely
Liz

#2 SunNsand

SunNsand

    Member

  • Members
  • PipPip
  • 21 posts

Posted 22 July 2014 - 10:38 PM

I know of a few on Facebook in CML support groups.

#3 NotJack?

NotJack?

    New Member

  • Members
  • Pip
  • 3 posts

Posted 23 July 2014 - 01:34 PM

Hi Liz.  Most of us become familiar with our CML through Trey's blog: 

http://treyscml.blogspot.com/ 

The biopsy is generally done at diagnosis.  This defines the depth of the CML and the mutations present.  I have several mutations, and this is relatively common.  I believe that it is important to have a specialist in CML verify the diagnosis and the follow up protocol.  Trey disagrees (and he is the expert on this site).  I have just heard too many problems that could have been avoided by having an oncologist who specializes in CML work in tandem with an onc that is a generalist.  These are not life threatening problems, but they do delay proper treatment.  Trey's blog will help you with most questions, and the rest of us can give you our perspectives based on our personal experiences.

Rest assured that CML is treatable through the use of smart drugs,  and there is mounting evidence that CML will probably be the first leukemia to be cured, and that we may be able to wean ourselves of the TKIs in time.  There are a few on this blog that are currently self-trialing this option with some success.  

I have found great support and current info (very important because the TKIs have changed the course of CML radically since 2000) from this blog and the members here, as I am sure that you will as well.  

Try to become familiar with the blood tests.  Insist on FISH tests initially.  PCR test are more accurate, but are not as informative as the counts are high.

Many general oncs will go directly with the PCR because of the precision,  missing the forest for the trees.  The delay for the biopsy assumes that certain mutations that determine the correct TKI will not be present.  To me, it would seem to be prudent to find out the exact dx(diagnosis) before launching the protocol.  Mostly because your child would have to go through adapting to the side effects if any, fewer times.  Every time you change TKIs, your body has to work through the side effects.

I  am sure that you will get much more advice from the other members from their experiences.  It will help to get copies of all tests.  The members here will help you interpret the numbers.

Take care, and check out Trey's blog.    


Jack


#4 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 23 July 2014 - 02:53 PM

Liz,

CML is somewhat rare in children, but there are several Mom's on here with kids who have CML.  All of their kids are doing well.  The website changes have upset normal posting to some degree, so try to hang in there for a while. 

 

Overall your son should do very well, should live a normal lifespan, and should have a mostly normal quality of life.  Although females taking CML drugs are told to avoid pregnancy, and males are also told to avoid fathering a child, it is unclear whether this prohibition should actually apply to males.  There is no real data on the issue except that males taking CML drugs have indeed fathered children, and there are no known incidences where this was a problem for the baby.  Over time I would expect this prohibition may be less restrictive.  If nothing else, stopping the CML TKI drug for a time to father a child would certainly be possible in his future.  And as stated above, there is mounting evidence that patients who take these drugs for many years may be able to stop at some point.

 

The Bone Marrow Biopsy test is the most accurate measure of early drug response.  It actually looks at approximately 20 white blood cells under a microscope and counts leukemic cells, resulting in a percentage.  He should have had one done at diagnosis, so the next one would be compared to the first one.  The BMB is not a pleasant experience, so it is not done very often -- usually at diagnosis, and again at 6 months, and maybe at 12 months; then they usually are no longer needed.  I assume he is having a BMB at 3 months since he is in a clinical trial.  That must be a clinical trial requirement which is more stringent than normal procedures. 

 

One of the best things you can do for your son is to treat him as though he is completely normal, and for practical purposes he is.  There is no reason why he cannot just be a normal boy without any significant restrictions.  The exception would be if he experiences very, very low blood counts, but most of us live with moderately low blood counts without restrictions, so don't worry if he experiences some moderately low blood counts.

 

For further information about CML testing including BMB you can look at this:

http://community.lls...ting +explained

 

Here is information I put together to help newly diagnosed patients, and it has a section about children with CML:

http://treyscml.blogspot.com/


Edited by Trey, 23 July 2014 - 02:55 PM.


#5 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 10 August 2014 - 08:21 PM

Hi CMLmom,

Just came across a Blog being kept by an Aussie girl, she was 12 when she was diagnosed, she is now 17.

http://maddisonsmind.../diagnosis-day/



#6 MichelleH

MichelleH

    New Member

  • Members
  • Pip
  • 1 posts

Posted 12 August 2014 - 11:42 PM

Hi cmlmom, my son was diagnosed with cml when he was 2 years old, almost 7 years ago. There is a closed facebook group with over 100 kids with cml/parents of kids with cml that a lot of us use for support too https://www.facebook...s/207664421574/

#7 rebecca428

rebecca428

    New Member

  • Members
  • Pip
  • 2 posts

Posted 18 September 2014 - 02:22 PM

Hi Liz,

   My son was Dx. at the age of 14, he is now 19 and has been in remission for almost five years.  :)






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users