I would love to hear from any other parents with a child that is diagnosed with PH+ALL. I know this is a rare subtype of ALL, but I can't find anyone else to chat with about the treatment and side effects.

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Hello, I just joined this website and notice your request. I am here also to find people that have children with ALL PH+. My son Robert was diagnosed on 3-12-2007 at the age of 5 1/2. He had a stem cell transplant on 7-18-2007.  If you would like to talk please let me know.

 

Sincerely,

 

Bob Caulfield

My son was diagnosed @ 14 years old with BAL (biphenotypic Acute leukemia) +PH, and leukemia in the CNS  in 2/2006, rare, rare, rare.... he had a double umbilical cord transplant in 8/2006 ( no live match in the bone marrow bank). He is now a sophomore in college and doing well. if you want to talk, let me know.
Hello Patricia, I would love to talk to you. Thank you for responding to my message. My email is b.caulfield@ymail.com. If you could email me your phone number,  I would like to ask you some question's. Thank You for your time, and I wish  your son all the best.

Hi Amanda, Patricia and Bob!

My son was diagnosed with Ph+ALL in March 2010 at the age of 5. He did 10 months on an experimental Dasatinib (Sprycel) protocol but because he relapsed while receiving treatment he had a bone marrow transplant from an unrelated donor in Feb. 2011. We are now 9 months post transplant & he is doing great!

I started a group on facebook & we do exactly what you said you are looking for. We chat about treatment options, tests, side effects, various protocols, and generally just support each other.

We are not doctors, oncologists or medical professionals. You can not substitute any advice given for advice from your own child's hemonc doctor but through sharing we are able to sometimes figure out the right questions to ask. 

There are almost 50 people in this group from the U.S., Canada and the U.K. If you are interested, we would love to get to know your families!

-Jenica 

 

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