RE: ALL Leukemia with the Philadelphia Chromosome

[Guest guest]

This is from someone I know here in Maine:

 

Jayne,

I have never heard of this...My daughter, Maddie, has Down Syndrome and has ALL

in remission.  She completed treatment in March of 2007.  My husband also has

leukemia.  His is called Chronic Myelogenous Leukemia (CML).  CML is a

translocation of the Philadelphia chromosome (I think maybe chromosome 18, but I

am not sure).  For his CML, Mark takes a drug called Gleevec.  It is relatively

new (less then 10 years) and is unique among cancer treatments because it

targets only the cancer cells (not all cells like chemo and radiation do).  So I

had no idea there was any such thing as ALL with the Philadelphia chromosome,

but I would want to ask if treatment with Gleevec might be a possibility.

[Guest guest]

I am sorry to hear about your daughter's friend. My daughter was diagnosed

with ALL in May of this year (she is 4/DS) and is getting her treatment

through the Dana Farber Cancer Institute in Boston. We are going this

Thursday for treatment, and I will ask the medical professionals there about

ALL with the Philadelphia Chromosome and see where they recommend for

treatment. Have you tried The Leukemia and Lymphoma Society at

www.leukemia-lymphoma.org or Pediatric Oncology Rosource Center at

www.acor.org/ped-onc? I'll post what I learn on Thursday in case any one

else is interested too. Although I do not know about the Philadelphia

Chromosome, I would be happy to discuss ALL in more detail if you or they

would like to e-mail me off-list. Good luck - we'll keep him in our

prayers.

Jeannie (Mom to Amina, 4 DS, and her 2 brothers, 11 and 13

ALL Leukemia with the Philadelphia Chromosome

> Urgent request!=A0 I received this email from a mother on the Ds/Autism

> Lis=

> t-serv.=A0 She has asked for help so I am sending this to the Ds lists I

> am=

> on.

> If you have any information about this type of leukemia, please email me

> ba=

> ck as soon as possible.

> Thank you for your help,

> Jayne

> =A0

> =A0

> My daughters friend who is a 9 year old boy with Down syndrome has

> been diagnosed with ALL leukemia with the Philadelphia Chromosome. I

> do not know much about it except that have not ever had a child with

> ALL with the Philadelphia chromosome and are in unchartered territory

> as to how to treat. The family and doctors are searching for any

> child with Down syndrome who has been treated for this and what the

> treatment was and the outcome good or bad. If people could post the

> question to any Down syndrome groups you may be involved with the

> family would greatly appreciate it.

>

>

> check out the view from my shoes at

> www.wickedbusymomto3.wordpress.com

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>