DIPG/DIPT Discussion

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A searchable blog on DIPG research, DIPG news, recent publications, DIPG Foundations, DIPG researchers, clinical trials as well as other issues relating to Diffuse Intrinsic Pontine Tumors- both Diffuse Intrinsic Pontine Gliomas (DIPGs) and Atypical Pontine Lesions (APLs).

For parents, family and friends of children with DIPG looking for information and connection to others dealing with DIPG please check the buttons on the right hand side for resources.

Monday, February 23, 2009

Angel Food Ministries

Even at the very best of times, having a child diagnosed with a life-threatening disease is devastating. Many families are forced to have one parent give up a job due to the demands associated with medical treatment and care for their ill child. The terrible turn with the economy has made the situation even more frightening. Thus, we look for new resources to help families get through the hard times. Today we found an outreach mission which is new to us- Angel Food Ministries.

Angel Food Ministries is a non-denominational, non profit organization dedicated to grocery relief. This ministry was started in Georgia in 1994 by a husband and wife, from their back porch, after a local plant closing affected many families. The idea was to buy high quality food at a discounted wholesale price and pass it on to those in need. The food is always ‘restaurant quality’ and never ‘seconds’ or ‘day old’. The ministry has spread to more than 35 states and feeds more than a half million people a month.

This is not free food; it is food at a discount. However, there are no applications or requirements. Anyone can participate. The recipient is charged about $30.00 for a box of food, which Angel Food estimates will feed a family of four for a week. One can order more than one box. March’s menu is at http://www.angelfoodministries.com/menu_0903en.asp

The way this works is that one signs up with a local host site, which usually takes orders at the beginning of the month. Then, on a pre-determined date later in the month, the food boxes can be picked up at the host site.

Often faith-based organizations try to bridge the gap for those in need. Angel Food is a faith-based organization and a magazine called “The Servant” is included in each box of food. This publication provides information about Angel Food Ministries, inspirational stories, the upcoming menu, recipes, and more.

We have never used the organization but thought it might be helpful to many of us during these difficult times.
http://www.angelfoodministries.com/

Sunday, February 22, 2009

Getting into the brain: approaches to enhance brain drug delivery

A major difficulty in treating brain tumors is overcoming the blood-brain barrier. This is no less true with diffuse intrinsic pontine gliomas.

Unlike other areas of the body where substances can pass freely from the blood into the tissue because there are some space between the cells lining the blood vessels, in the brain movement of substances is significantly limited. This barrier between the blood and the brain is formed by the lining cells of the vessels as well as projections from nearby astrocytes. These two types of cells are knitted together by proteins to form what is called ‘tight junctions’. The entire structure is called the Blood Brain Barrier (BBB). The result is that chemicals, toxins, bacterial and other substances are often kept from getting into the brain. Thus, it serves a daily protective function preventing substances to get to the brain. However with disease such as brain tumors the BBB also can prevent diagnostic and therapeutic agents from reaching their target in the central nervous system.

Researchers and clinicians have developed ways to try to overcome the blood brain barrier. Here are some examples:

  • Intrathecal/Intraventricular Administration - This is chemotherapy directed injected into the cerebral spinal fluid either through a lumbar puncture or a surgically implanted catheter.

  • Intracerebral Implants - Formation of a cavity surgically within a tumor allows the potential to place chemotherapy wafers- such as gliadel wafers. Several of these dime sized wafers can be placed at the time of surgery and will release the chemotherapy slowly over time (carmustine). The advantages include a much higher concentration of chemotherapy in the brain than can be obtained over intravenous administration as well as less systemic side effects. Gliadel is an FDA approved indication at initial and subsequent surgeries for malignant gliomas. This is not an option for those patients who do not have surgically resectable tumor so is not available for DIPGs.

    Video: http://www.gliadel.com/consumer/about/moa_video.aspx

  • Osmotic Blood Brain Barrier Disruption (BBBD) - With BBBD the cells of the BBB are shrunk by a concentrated sugar solution (mannitol). This allows the barrier to open up and ten to hundred fold increase of chemotherapy to enter the brain. A catheter is placed into one of the big arteries (usually the one in the groin called the femoral artery) and a catheter threaded up to the carotid or vertebral vessels. The hypertonic mannitol is injected and afterwards a chemotherapeutic agent is injected. Patients spend a few days in the hospital for each administration. This has been attempted with DIPG tumors.

    Reference: Osmotic blood-brain barrier - disruption chemotherapy for diffuse pontine gliomasJ Neurooncol. 2006 May;77(3):279-84. Epub 2005 Nov 29

  • Convection Enhanced Delivery - Convection-enhanced delivery allows for chemotherapy to get to the tumor by a surgically implanted catheter under a pressure gradient to achieve more distribution than with diffusion alone. There has been limited experimental experience with brain tumors and one article with a DIPG.

    Reference: Real-time image-guided direct convection perfusion of intrinsic brainstem lesions.J Neurosurg. 2007 Jul;107(1):190-7.

  • Drug Carriers - Trojan horses, liposomes and nanoparticles - Most of this is in an investigational level and is not clinical relevant to brain tumors treatment at this time. The hope is that a drug can be combined with another agent which will allow it to cross in a protected manner into the brain. Drugs can be linked to agents that normally cross into the brain.

Reference: Getting into the Brain: Approaches to enhance brain drug delivery CNS Drugs 2009;23(1):35-58.

Copyrignt 2008-2009 Just One More Day for Love, Hope & a Cure, Inc. All rights reserved. The materials and links provided on this site have been prepared for information purposes only and should not be construed as advice or opinions on any specific facts or circumstances. Medical research concerning disease and treatments is an ongoing process. Readers should not act upon this information, but should obtain advice from physicians, medical institutions or other professionals, as appropriate.

Friday, February 20, 2009

DIPG Digest

DIPG News brought to you by:
Just One More Day for Love, Hope & a Cure
http://www.justonemoreday.org/

February 20, 2009


Medical News -- Convection Enhanced Delivery

New Article:
http://www.ncbi.nlm.nih.gov/pubmed/19212774?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum : Interstitial continuous infusion therapy in a malignant glioma model in rats.

Background Information:
http://www.ncbi.nlm.nih.gov/pubmed/18952590?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum : Convection-enhanced delivery for the treatment of pediatric neurologic disorders.

http://www.ncbi.nlm.nih.gov/pubmed/17639894?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum : Real-time image-guided direct convective perfusion of intrinsic brainstem lesions.

http://www.ncbi.nlm.nih.gov/pubmed/18076322?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=5&log$=relatedreviews&logdbfrom=pubmed :Convection-enhanced delivery for treatment of brain tumors.


Medical News

http://www.ncbi.nlm.nih.gov/pubmed/18784279?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum : Experience with irinotecan for the treatment of malignant glioma.

http://www.plosgenetics.org/article/info:doi/10.1371/journal.pgen.1000374 : A Drosophila Model for EGFR-Ras and PI3K-Dependent Human Glioma

http://www.newswise.com/articles/view/549216/ : Two Gene Mutations Linked to Most Common Brain Cancers - and Longer Survival


Foundations News

http://www.caringbridge.org/visit/gunnergillespie : Gunner's Magic Train is trying to "BOUNCE OUT PEDIATRIC BRAIN TUMORS" We are hosting the fundraiser to raise funds and awareness for brain tumors in hopes of helping to find a cure. WE CHALLENGE your school or organization to try and raise the most money.

http://dipg.blogspot.com/ : DIPG Discussion -- brought to you by Just One More Day for Love, Hope & a Cure. A place to discuss and stay up to date on the diagnosis and treatment of Diffuse Intrinsic Pontine Gliomas and the DIPG community.



For past issues of DIPG Digest please visit http://www.justonemoreday.org/ParentPointers/DIPGDigest.html

Please submit information you feel will be helpful to DIPG families to JustOneMoreDay@cfl.rr.com subject: DIPG Digest


Copyright 2008 - 2009 Just One More Day for Love, Hope & a Cure, Inc. All rights reserved. The materials and links provided on this site have been prepared for information purposes only and should not be construed as advice or opinions on any specific facts or circumstances. Medical research concerning disease and treatments is an ongoing process. Readers should not act upon this information, but should obtain advice from physicians, medical institutions or other professionals, as appropriate.

Saturday, February 14, 2009

Tumor Tissue Analysis for DIPGs

Just One More Day is committed to finding a cure for DIPGs. Many researchers believe in order to find a cure we must begin with tumor tissue analysis. To help these researchers succeed, a fund has been established to support research and logistics for molecular analysis of diffuse intrinsic pontine gliomas. Donations can be made at JustOneMoreDay.org or by clicking the donate button on this page.

Just One More Day has been in contact with many of these researchers and has received detailed information about the studies being conducted. Please take a look at the information provided.

Children’s National Medical Center, Washington DC
National Institutes Of Health
The Hospital for Sick Children, Toronto, Canada

Our website will continue to be updated as we receive more information.