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DIPG Treatment: What Are The Options Available?

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No cure has been found for Diffuse Intrinsic Pontine Glioma (DIPG) yet but efforts are being made to find a cure. However, there are steps that can be taken to ensure that your child goes through less pain. Let’s understand what is the current scenario and why certain conventional treatment options do not work permanently.

Why brain surgery is not possible:

  • Unlike other tumors, DIPG cannot be removed through surgery. DIPG occurs in the pons of the brain stem. A medical professional cannot conduct surgery in that part without damaging the brain tissue surrounding it, making surgery highly dangerous.
  • DIPG is not a well-defined tumor. It spreads between brain cells and has no definite boundaries. It also grows rapidly. This is another reason why surgery is not possible.
  • However, sometimes, when MRI scan results are atypical, a medical professional may need to perform a biopsy and extract a small part of the tumor for diagnosis. Also, surgery may be performed in case of hydrocephalus (build-up of pressure in the brain due to DIPG). Endoscopic third ventriculostomy (ETV) is performed to treat this condition. When this is not possible surgery may be performed to place permanent shunts in the brain.
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Until a cure is found, we at Marc Jr Foundation will not rest.

About DIPG and radiation therapy:

  • Radiation therapy is only a temporary form of treatment and the only one that can make the DIPG tumor shrink.
  • Radiation therapy can help provide relief from various symptoms of DIPG like nausea, fatigue, imbalance, loss of muscle movement, blurry vision etc.
  • After a short span of time, the tumor will begin to grow again. On average, radiation therapy increases the survival time of a DIPG patient by three months.

Experimental chemotherapy and its impact:

  • Around 250 trials have been conducted in the last three decades where chemotherapy drugs have been used on DIPG patients. However, they haven’t proven useful. Studies are being conducted even today in this field.

Alternative therapy:

  • Depending upon personal beliefs, alternative therapy options like acupressure, acupuncture, massage, use of herbs etc. can help in managing the pain that arises because of the growth of DIPG tumor or due to the side effects of radiation therapy and experimental therapy.

To know more about DIPG, you can read our other blogs and educational resources. Marc Jr Foundation is always there for you.

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Sources: 1, 2, 3

Read more:

5 Things About DIPG That Will Help Us Understand It

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Knowing More About The Diagnosis Of DIPG

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In Marc Jr Foundation’s DIPG awareness series, we have written about what is DIPG and its symptoms. In this article, we are going to understand more about the diagnosis of DIPG. We know that DIPG is a rare glial tumor, a cure for which hasn’t been found yet. As this tumor occurs in the pons of the brain stem, usually a biopsy is not possible.

A patient’s symptoms clinical history along with a Magnetic Image Resonance (MRI) scan can help diagnose DIPG. Through MRI detailed brain scans are created which allows medical professionals to check whether a tumor is present in the pontine segment of the brain.

A Magnetic Resonance Imaging (MRI) Machine

The margins of a DIPG tumor are not well-defined like other tumors. Sometimes a contrast agent is used before an MRI scan but it may not enhance a DIPG tumor. Once the presence of the tumor is ascertained, its position in the pons, its size, the way it presses on the brain tissue etc. are some of the things that help the doctors diagnose DIPG.

In rare cases, when the results of the MRI scan and the symptoms of the child are atypical, surgical biopsy may be performed. This procedure is considered to be very risky by medical professionals. According to The Childhood Brain Tumor Foundation, France used biopsies to diagnose DIPG.

Location of DIPG tumor in the brain | Source: medicpassion.com

 

Like DIPG, the diagnosis of the tumor is a taxing procedure that can take a toll on the family and the child. We request you to join our movement to raise awareness about DIPG and to generate funding for research to find a cure. It is a shocking reality that only 4% of the United States’ federal funding is dedicated for childhood cancer research, according to St. Baldrick’s Foundation.

You can volunteer, donate, or sponsor our events. Thank you, in advance.

 

Sources:

https://www.childhoodbraintumor.org/medical-information/diagnostics-and-epidemiology/item/272-dipg-2014

http://weillcornellbrainandspine.org/condition/diffuse-intrinsic-pontine-glioma-dipg/diagnosing-and-treating-dipg

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The Symptoms of DIPG You Should Be Aware Of

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Awareness about the not-much-talked-about Diffuse Intrinsic Pontine Glioma (DIPG) can help in the diagnosis and pain-relieving treatment of the disease. These glial tumors, that are found at the base of the brain are most common in children. A related condition called “hydrocephalus” wherein fluid builds-up in the brain also causes pressure in the brain.

These are the major symptoms of DIPG:

Problems with eye movement, vision, and control:
 
DIPG occurs in the “pons” of the brainstem, causing pressure on the cranial nerves that originate from that part of our brain. These nerves control the facial muscles that are used to move the eyes. Other symptoms of DIPG related to the eyes are double vision, drooping of the eyelids and inability to completely shut the eyes.

Difficulty in swallowing and chewing:

The cranial nerves that originate from the pons, also control the facial muscles which are used to chew and swallow food. Difficulty in performing these two functions are one of the first red flags.

Problems in balance:

The balance system of the human body works when the inner ear, brain, muscles, joints and the eyes function unimpaired together. DIPG hampers their functioning.

Headaches:
 
It causes headaches, especially in the morning. As the tumor enlarges, it causes pressure and pain in the brain.

Nausea and vomiting:

Both these symptoms are a result of the increased pressure inside the brain.

Other symptoms like fatigue, anxiety, deafness, difficulty in urinating, problems in walking, weakness in the limbs, clumsiness, difficulty in sleeping are also present. Symptoms can get intense a month before diagnosis but can also appear up to six months before. As DIPG is a rapidly-growing tumor the symptoms can get worse quickly. It is advisable to seek medical help as soon as possible.

The Marc Junior Foundation has been dedicated to spreading awareness about DIPG, funding research for its cure and encouraging the participation of the people in helping those facing DIPG. Join our movement. You can also donate to the cause.

Sources:

  1. https://dipg.org/dipg-facts/symptoms-of-dipg/
  2. https://dipgregistry.org/medical-professionals/dipg-symptom-management-and-end-of-life-care/
  3. http://weillcornellbrainandspine.org/condition/diffuse-intrinsic-pontine-glioma-dipg/symptoms-dipg
  4. https://www.hopkinsmedicine.org/health/articles-and-answers/ask-the-expert/brain-tumors-in-children-8-warning-signs-you-should-know
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5 Things About DIPG That Will Help Us Understand It

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Famous philosopher Voltaire said, “God gave us the gift of life; it is up to us to give ourselves the gift of living well.” It is difficult to have a positive outlook when your child is facing a rare tumor-like DIPG (Diffuse Intrinsic Pontine Glioma) but it is necessary. It is the quality of life that matters the most, no matter how long it is. When facing DIPG, one of the greatest challenges we face is the lack of knowledge about it. These seven things will help us understand it better.

1. DIPG affects children majorly, it is uncommon in adults.

About 300-350 cases of DIPG are diagnosed every year in the United States, out of which most are in children aged below ten. Both boys and girls are equally affected. (source)

2. The disease occurs in a delicate area of the brainstem that controls critical body functions.

DIPG occurs in the “pons” of the brainstem of a person. The pons is a structure located in the upper part of the brainstem that controls functions like breathing, senses like hearing and taste, body balance, communication between different sections of the brain etc.

3. The symptoms of DIPG can appear suddenly.

Typical MRI appearance of diffuse intrinsic pontine glioma (DIPG) | Katherine E. Warren (2012) [CC BY 3.0]
A pontine glioma, DIPG grows rapidly. Some of the early symptoms include sudden hearing problems, nausea, headache, vomiting, problems with movements of the eyes and eyelids, weakness in the face and the limbs, loss of balance, problems in chewing and swallowing food among others.

4. A cure has not been found for DIPG yet.

 

Treatments like radiotherapy help with the symptoms of DIPG by shrinking the tumor but they do not cure it. Despite ongoing research, no definite cure has been found. Research conducted by Dr. Mark Souweidane of St. Baldrick has come close to finding a cure through injecting a high concentration of cancer-fighting drug directly into the tumor. (reference)

5. Awareness, acceptance and comforting can go a long way in helping to deal with DIPG.

As the awareness of this rare tumor is scarce, it is difficult for families facing DIPG to understand and face the disease. Accepting that your child is facing DIPG will help you comfort them and make it a little easier. Simple comforting techniques like giving them their favorite soft toys, cuddling with them under a blanket like Quility, or watching a superhero movie with them will help.

Quility Premium Kids Weighted Blanket & Removable Cover
Quility Premium Kids Weighted Blanket & Removable Cover

The Marc Junior Foundation has been helping families dealing with DIPG by offering educational and financial assistance, along with making efforts to fund research to find a cure. Get in touch with us for more information, donate today to make a difference.

You can also follow us on Facebook.

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Diffuse Intrinsic Pontine Glioma (DIPG)

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What is a Diffuse Intrinsic Pontine Glioma (DIPG)?

DIPG stands for Diffuse Intrinsic Pontine Glioma. It is commonly referred to as diffuse pontine glioma, diffusely infiltrative brainstem glioma, and brainstem glioma. The Marc Jr Foundation, and most of the organizations that we collaborate with use the name diffuse intrinsic pontine glioma (DIPG).

In simple words, DIPG is a rare brain tumor that occurs in the Pons, the most delicate area of the human brain. The brain and the spinal cord are connected with a brainstem. The three distinct parts of the brainstem are Mid brain, Pons and Medulla oblongata. DIPG is a cancer of the Pons which serves as the message system between several areas of the brain and controls many critical functions such as breathing and blood pressure.

DIPG - Structures of the brainstem
Structures of the brainstem. Credit: Wikipedia.

DIPG is considered one of the most dreaded forms of childhood cancer mainly because of the location of the brain that it affects and due to the way it infiltrates the normal brain tissue. It affects approximately 500 children each year in the United States with a peak incidence in children around 3 to 9 years of age. It affects girls and boys equally and spans across all social, racial, and religious groups.

There is no known cause of the DIPG and it is a hard pill to swallow. This cancer hasn’t received enough research funding to find a cure and it comes with a zero survival rate that has not improved over the years because of the lack of new research funding. The Marc Jr Foundation is committed to funding this work.

If you would like to join the fight for a cure to defeat DIPG and help families dealing with it, please Donate for a cure today!

Read more about Marc Jr Foundation at marcjr.org and follow our Facebook page.