1. CNCF Conference Summary (July 18. 19 2008)

   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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2. Removing the Money Barrier

   By Aaron Horn (Individual Donor)

   The doctors get frustrated because they have great ideas on how to treat our kids better than using chemotherapy alone, which often times does not work, but they don't have the funds to get the drugs through testing, approval and production.  The Band of Parents is dedicated to not letting a little thing like "money" get in the way of finding a way to save more kids from this disease.  They have consistently surprised the doctors by providing this money so that the testing, approval and production CAN be done to offer hope.
   
   This is a very worthwhile cause and has real tangible outcomes.  Thank you for contributing and helping remove the "money barrier" for these kids!
   
   Aaron
   http://www.change.org/myfundraising/hornit

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