ON 07/28/08 By Amber Yost (Volunteer, General public)

Children's Neuroblastoma Cancer Foundation -   ( CNCF)  Conference
for Families in Chicago, July 18, 19, 2008

A friend and NB Family member attended this conference to see what new techniques and research is being conducted on Neuroblastoma at other institutions.  All major institutions and some of their key personnel were represented:  Sloan Kettering,
St. Jude, Children's Hospital of Philadelphia ( CHOP), Texas Children's Hospital ( Part of Baylor Medical University), City of Hope  (California), and Texas Tech.

Dr. Cheung ( Sloan) was present, and I was able to spend most of day
one with him and his wife ( also a Sloan NB researcher) at our table
and at dinner.  I was most impressed with Dr. Cheung; his logic, his
thinking, and his dedication.   All researchers were very informal,
approachable and easy to speak with.   Overall a very good session
with roughly 100 families present.

On Saturday night I was invited to have dinner with the group that
organized the event, Mark Dungan and Pat Tallungan (CNCF staff) along
with Dr. Darrell Yamashiro ( New York Columbia Presbyterian
Hospital).  This was a fun informal and mostly small talk evening.  I
was most impressed with Mark and Pat, both NB parents.

Many presentations were very technical and given quickly, not having
a medical background was a bit of a handicap although I am quickly
coming up to speed on the lingo and abbreviations.  My notes and
insight here is therefore limited. The following are some of my key
items I picked up:

-    There are genetic markers in some families which can help
explain a small percentage of the NB cases ( 2%). Most do not appear
to have family history.
-    Of particular interest is a mutation of the ALK gene which
seems to pre-dispose kids to NB.  ALK fusion to other genes is seen
in other cancers such as small cell lung cancer and esophageal cancer.
-    Constipation and Hirschsprung disease seem to run together
with some NB cases.
-    GCSF has allowed increasing the Chemo therapy intensity.
While Chemo intensity has increased over 400% in the last 20 yrs,
survival rates have only increased 50%.  Chemo intensity is now seen
at max level for toxicity.
-    The only real change in survival prognosis will come from
efforts regarding the immune system.  Antibody treatments (e.g.  3F8,
CH14.18), Stem cell treatments, vaccines and similar technology.
-    A big discussion -  re. Bone Marrow transplants.  All
institutions and COG standard call for these except Sloan
Kettering.   As Dr. Cheung put it, a few years ago bone marrow
transplants was the standard of care for Breast Cancer, but it has
been dropped as we developed more effective less toxic technology.
He feels the same holds for NB, where antibody treatment can be as
powerful or better than transplants with none of the Chemo side
effects.  He presented data for kids who had transplants and 3F8 and
those who only had 3F8.  Although the sample size was small, overall
survival rate was very similar.
-    3F8 combined with GCSF (stimulates the immune system) has a
better outcome than 3F8 by itself.
-    Increased dosage of 3F8 has better outcome.
-    GCSF has the ability to feed NB tumors, therefore the
approach is  Start Late -Stop early.
-    Relapse in first 12 months is difficult to deal with.  Brain
(CNS) relapse is manageable.  Single site- can get it back in control.
-    Disease at relapse may not be the same as original diagnosis.
-    N-Myc amplified cases have poorer prognosis.
-    Tumor histology changes after a round of chemo.
-    There were 2 adults at the conference who were diagnosed in
their teens ( Very rare).  In late teens and adults NB tends to be
slower growing and not as aggressive and is viewed as controllable.
Tumors in kids under age 15 months are very treatable and have
excellent prognosis.  Dr. Cheung made a very interesting comment
here -  " Same Seed, different Soil".  Reasons for the difference in
soil are not understood.
-    Harvested stem cells are not useful after 5 years, kids
weight is now 2X and more cell volume is required.
-    ABT-751 + Fenretimide has given some promising results, now
in COG phase 1 study.
-    T-cell therapy ( vaccine) at Texas Children's Hospital.  Uses
a tumor based vaccine ( autologous) + IL-2 + LTN and are starting
Phase 1 trials.  Contact is Ellen Shohnet at 833-822-1526.
-    Dr. Darrell Yamashiro reported on a novel transplant process
at Columbia Presbyterian ( NY) using a tandem transplant where the
first is autologous (standard) and the second is Allogenic from a
family member "a Perfect Mismatch".  The concept is to reset the
Immune system by getting donor t-cells established in the patient..
-    City of Hope and St. Jude presented an overview of very new
and exciting work which has not been published yet, based on Neural
Stem cell therapy.  Concept is to take progenitor cells ( immature
not-differentiated stem cells) and deliver markers to tumor sites
using the "tropism" property of these cells ( ability to home-in on
specific systems). Then use the body immune system to kill the marked
tumor cells.  Lab results with mice were very impressive.  Adult
Brain cancer Phase 1 trials will start this fall, Pediatric cancers
will follow mid- 2009.   They feel they will demonstrate this
technique to be useful for a number of cancers.  This is one we need
to monitor!
on Zachary was diagnosed w. Neuroblastoma Cancer at age 2.5 which has turned our lives upside down ever since. Life in treatment for him at a young age has proved very trying for him!

We have since found HOPE with an organization of our choice http://www.bandofparents.org and hope we can do our share to support the organizations efforts and ask you do the same!

Many families are faced to endure the same pain we have however in more serious degrees and stages. This disease comes and goes! A child is diagnosed and treated per protocol, goes in remission, and in many cases the disease comes back with less chances of cure!

We have seen many children earn their wings which is very hard to swallow for us because it hits very close to our hearts and home! (God Bless All of Our ANGELS, look over our Heroes still among Us PLEASE)

We have met some WONDERFUL, CARING, and DEAR people throughout our travels most of which are fighting the same disease, and some who are fighting other pediatric diseases.

Please Help Us!
Together We Can Make A Difference!

Amber Yost

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