CRF learned yesterday that Lisha’s follow up was “Thumbs Up” her next MRI is 4/18. She is living proof that we will find “A CURE”!
In a new milestone in the fight against DIPG, Dr. Mark Souweidane this week performed a direct infusion of a cancer-fighting drug into the brain of a young patient — for the third time. The child was the first ever to receive three infusions, all at the highest dose level in the trial.
The six–year–old, who was diagnosed with DIPG in January of this year, joined Dr. Souweidane´s clinical trial in June, when he was treated with an interstitial infusion (also called convection–enhanced delivery, or CED) of a drug intended to stop DIPG´s usual relentless progression. By delivering the drug directly into the tumor site, Dr. Souweidane avoids the difficulty of getting that drug across the defensive blood-brain barrier. (See more about the trial.) The child received a second infusion in July, and then was treated for a third time this week.
“He´s recovering beautifully,” said Dr. Souweidane of the patient. “An MRI immediately after the infusion showed excellent drug distribution in the brain stem and no unexpected findings. More importantly, he is himself. When I spoke to him the day after his treatment and asked what he wanted to be for Halloween, he told me he wanted to be Darth Sidious.”
Several children have been treated twice in the trial, but Dr. Souweidane says this child was doing very well, with no disease progression, which boded well for a third treatment. The patient’s parents were also persistent in their drive to have their child treated again.
“They´re already asking about a fourth treatment,” says Dr. Souweidane. The first phase of the trial ended this summer, when the 27th and final patient was infused for the first time, but the FDA has approved repeated treatments as an extension of the trial.
It´s too soon yet to tell whether and how the repeated infusions will affect the ultimate course of this uniformly fatal disease. But Dr. Souweidane says there’s no reason why other children who were treated already, even at the maximum dose level, can´t be treated again. He´’s energized by these latest treatments, and is already looking ahead to the future.
“Each of the three infusions contained the seventh and highest dose level tested in this trial,” says Dr. Souweidane. “The ability to tolerate three infusions in such a short time, and of the maximum dose, paves the way for one of the possible next steps in this avenue of investigation, which could be to implant an infusion system to deliver the drug without repeated surgery.”
Whatever the next steps are, Dr. Souweidane promises to be at the forefront of the research.
Read the blog of Three-Time Winner: Dr. Souweidane Extends His Fight Against DIPG, click the link belowweillcornellbrainandspine.org/in-the-news/three-time-winner-dr-souweidane-extends-his-fight-against-dipg
Dr. Mark Souweidane today treated the final patient in his Phase I clinical trial of convection-enhanced delivery (CED) for diffuse intrinsic pontine glioma (DIPG). The trial, which had enrolled 31 patients over the past four years, was designed to test the safety of CED as a means of delivering a cancer-fighting drug directly to the site of a DIPG tumor. (More about the DIPG trial.)
The trial received FDA approval in late 2011, and the first patient was treated in May 2012. (Read “Cheering for Caitlin,” a profile of the first patient.) Since then, 30 children have received infusions of a therapeutic agent called 124I-8H9, which consists of the 8H9 antibody (produced by mice and effective against many kinds of tumors) combined with the radioactive substance 124I. The dosage of the drug was increased over the course of the trial, also testing safety, but no dose-limiting side effects occurred in any patient.
The infusions, which were done at Memorial Sloan Kettering Cancer Center, were able to deliver the drug directly to the brain stem tumor and were not blocked by the body’s protective blood-brain barrier, which normally prevents chemotherapy drugs from crossing from the bloodstream into the brain in sufficient concentrations to attack a tumor. In this trial, Dr. Souweidane was able to achieve concentrations of 1,000 times or more than what can be achieved with IV chemotherapy. He was also able to design and test new ways to measure those concentrations at the tumor site and monitor how long the drug stayed in the tumor.
Dr. Souweidane and his team will spend the next several months evaluating the data and preparing the results for publication. In the meantime, researchers in the Children’s Brain Tumor Project laboratory have been working to pave the road for the next stages of the trial. Other drugs and drug combinations are being tested to determine what the best agents are to infuse, and at what dose levels. DIPG cell lines are also being grown in the lab, providing a rich source of information about how the tumor mutates over time and responds to different treatments in vitro as well as in animal models. (More about the Children’s Brain Tumor Project.)
Read the blog post written by Dr. Souweidane after he treated the final patient in the trial, click the link below www.weillcornellbrainandspine.org/dipg-new-beginning
Minnesota Boy with D.I.P.G. meets his favorite
At The Cristian Rivera Foundation, our primary goal is to assist in finding a cure for Diffuse Intrinsic Pontine Glioma. Our Foundation also plays a critical role in supporting families that are impacted by D.I.P.G. By pulling together all of our resources to make dreams come true.
Such is the case when the founder of the Cristian Rivera Foundation,
Allen is an 8 year old boy who was diagnosed with D.I.P.G. Just like most children his age, he loves The Power Rangers and his dream was to meet his favorite Power Ranger- the Blue Power Ranger. John contacted the CEO of The Little Kernel Popcorn Company, Andy Epstein. He also contacted Craig Serra who also serves as a board of directors for The Cristian Rivera Foundation & “JOINED FORCES” with Robert Vazquez, a Cristian Rivera committee member, and Like the Power Rangers, they all “JUMPED INTO ACTION” and started the process of making Allen’s wish come true.
This past weekend The Cristian Rivera Foundation and
After Allen met his favorite Blue Power Ranger here is what his family said- “Thank you CRF… Allen was sooo happy today when he met with Yoshi the Blue Dino Power Ranger… It made him speechless… He didn´t know how to speak anymore lol he was so shy and nervous that he forgot how to talk or move lol… We saw him yesterday at the Q & A but didn´t meet him yet… I didn´t know who Yoshi is until Allen point him out and say mom he´s the blue Dino power ranger.. I asked him how he know? He´s not him his costume? Allen response was that you got to be a big fan to know lol… This boy is too smart for me… Thank you from the bottom of our heart for making this dream come true.. Love Allen and family ♥♥♥”
We at The Cristain Rivera Foundation & The Little Kernel Popcorn Company are “Full Steam Ahead” in finding a cure and fulfilling dreams! Spread the word, support & help us get closer to a cure.
Learn more at CristianRiveraFoundation.org
What is DIPG (Diffuse Intrinsic Pontine Glioma)?
Who is The Cristian Rivera Foundation?
How Can You Help:
Thank You again and may this be the year we say goodbye to DIPG, (Diffuse Intrinsic Pontine Glioma), FOREVER!
John “Gungie” Rivera
Board of Directors of the Cristian Rivera Foundation:
Committee Members of the Cristian Rivera Foundation:
Committee Friends of the Cristian Rivera Foundation:
Follow the Cristian Rivera Foundation:
Humans of NY has been doing a 2–week series on pediatric cancer (patients, families, providers) at Memorial Sloan Kettering. Mark Souweidane was interviewed for the series on Tuesday and his segments were posted on Wednesday. It has been an amazing phenomenon for two straight days now – literally hundreds of thousands of comments, likes, shares, and a veritable outpouring of support and love for Mark and his work. You really have to see it to believe it – and it’s truly amazing to read the comments and see the project through the eyes of people hearing about it for the first time.
To Read About it, click the link below www.humansofnewyork.com/post/144608280536/44-my-childhood-was-building-things-model
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Everyone at the Cristian Rivera Foundation would like to express our condolences to the family of Caitlin Downing, who earned her wings on Sunday November 11 surrounded by family and embraced in the loving arms of her parents. Caitlin not only fought bravely in her battle against DIPG but she was a pioneer in the DIPG community as she became the first patient in Dr. Mark Souweidane’s clinical trial in May of this year. Caitlin was a beautiful girl who loved to smile, go to school and put bows in her hair, her mother Denise wrote on her website. Caitlin and Denise were guests of honor at this year’s Fourth Annual Cristian Rivera Foundation Celebrity Gala, where they shared their story about Caitlin’s surgery and subsequent struggle. Caitlin was an inspiration to us all and our thoughts and prayers go out to her entire family.