Here you’ll get to know several children from around the world who’ve come to Monterrey
Monterrey
Monterrey is the capital and largest city of the northeastern state of Nuevo León, Mexico. The city is anchor to the Monterrey metropolitan area, the second most productive in Mexico with a GDP of US$ 123 billion and the third largest with an estimated population of 4,689,601 people as of 2…
What is the treatment for DIPG?
Aug 31, 2020 · Radiation is part of the standard course of treatment for DIPG patients, as it is the only form of treatment that has proven benefits. For roughly 70% of DIPG patients, radiation causes the tumor to shrink, which provides relief from many of …
Does chemotherapy work for DIPG?
Jun 25, 2018 · Drs. Alberto Siller and Alberto Garcia run Clínica 0-19 in Monterrey, Mexico, which has become a magnet for patients with diffuse intrinsic pontine glioma (DIPG), a deadly brain cancer. Unfortunately, their treatment is an unproven combination of 11 chemotherapy drugs injected into an artery feeding the brainstem, plus an unknown and unproven "immunotherapy."
How effective is radiation treatment for DIPG?
Jul 31, 2019 · Radiation is part of the standard course of treatment for DIPG patients, as it is the only form of treatment that has proven benefits. For roughly 70% of DIPG patients, radiation causes the tumor to shrink, which provides relief from many of …
How many clinical trials have there been for DIPG?
Sometimes, children with DIPG and their families can travel to a hospital with a specialized brain tumor program for diagnosis and expert advice but receive ongoing care at a hospital closer to home. Radiation Therapy. Chemotherapy. Surgery.
What is the best treatment for DIPG?
What happens in the final stages of DIPG?
How long has someone lived with DIPG?
Are there any survivors of DIPG?
What are the first signs of DIPG?
- Balance and walking problems.
- Trouble chewing or swallowing food.
- Speech problems.
- Eye problems like control of eye movement, double vision, or droopy eyelids.
- Quick loss of hearing or deafness.
- Nausea and vomiting.
- Headaches in the morning or after they vomit.
How fast does DIPG progression?
The time to tumor progression was 7 months from diagnosis. Only 10% of patients lived more than 2 years with DIPG, and the survival rate was less than 2% at 5 years.
What happens to a child with DIPG?
Is Kaleigh Lau still alive?
Why can't DIPG be treated?
Camron Cozzi
Two years ago today, on December 22 nd, 2015, 15-year-old Camron Cozzi and his family received life-altering news: Camron had an inoperable brainstem tumor called DIPG.
Zoé Donneaud
We met with Zoé our last evening in Monterrey. Her family had just moved into their new apartment, where Zoé was quick to absorb my daughter Lily into her inner circle, cuddling her, presenting her with a handmade gift, working together on a puzzle, and watching one of Zoé’s favorite Disney movies (in French!).
Alan Vasquez
Alan and his mom Midy and tia Michele were staying on the outskirts of central Monterrey. We met them the afternoon of the last full day of our trip in their new construction apartment, which Mariana Gutierrez—who Midy calls “Alan’s angel”—helped find them at a discounted rate for the week.
Luke Stewart
We got to meet 7-year-old Luke and his brothers Lewis (5) and Lochlin (1) when his parents were looking into hyperbaric oxygen therapy on the first day of our trip.
Kira Brown-Augdal
The first time I met Kira in person, she was visiting Rhode Island with her family—her Mama (my cousin, Jeni) and Pappa (Trond), and Kira’s brothers, August and Jasper.
Kaleigh Lau
If “pink” could name someone’s personality, surely it would be Kaleigh’s. With her sights set on someday becoming a princess, Kaleigh gets in lots of practice for her future position. She’s straightforward, yet gracious; determined, but considerate.
Ronil Mehta
Ronil’s story is one of the hardest for me to write, maybe because I so clearly remember being 13, but more likely because of how he lives his life—with devastating beauty.
Addy Joy Sooter versus DIPG
In October 2016, Addy Joy Scooter was a healthy, happy two-year-old living with her parents in Arkansas. That’s when, during a trip to the Silver Dollar theme park in Missouri, the parents noticed something very wrong:
Clínica 0-19
I observed at the beginning of this post how the lack of mention of the name of the clinic in Mexico where Addy Joy Sooter was treated in so many news stories was one of the things that first got my skeptical antennae twitching (well, that and the $200,000—and counting—bill for the treatments).
Drs. Alberto Siller and Alberto García and the Instituto de Oncología Intervencionista
So what is this “experimental treatment” at Clínica 0-19 that attracted Addy Joy Sooter’s family as the last resort to try to save their daughter? It all boils down to Drs.
The Australian connection
It didn’t take me long to discover that there is a direct pipeline between Clínica 0-19 and Australia, because multiple stories came up of children from Australia being treated at this clinic.
Author
Dr. Gorski's full information can be found here, along with information for patients. David H.
What is proton beam therapy?
Proton beam therapy is a specific type of radiation therapy that uses proton particles for treatment rather than the photons (x-rays) that are used for most radiotherapy . Protons have an anti-tumor effect that is very similar to conventional photon radiotherapy.
Can chemotherapy cause diarrhea?
Some chemotherapy drugs can cause side effects such as diarrhea, constipation, fatigue, and headache. Usually these side effects can be controlled with additional medications. Surgery. DIPG grows in a way that makes surgical removal (often called “resection”) impossible.
What is the best treatment for a child with a DIPG?
In summary, photon radiation is currently the most effective treatment for children with a DIPG. With more clinical trials and studies on these emerging methods, treatment options may expand.
Is radiation used for gliomas?
Radiation is currently the standard of care for children with diffuse intrinsic pontine gliomas (DIPGs). There are new and upcoming treatment methods on the rise, some are in the early phases of being used for DIPGs, while others need more clinical trials and studies before being herald as the new standard.
What is a CED in cancer?
CED is a way to bypass the BBB and deliver drugs at high concentrations into the DIPG tumor. While CED is a way to administer drugs directly to the tumor, it is not a full treatment plan. Doctors and scientist still need to discover which drug (s) will work best with the CED method. Learn More About CED.
What is intra-arterial chemo?
Intra-arterial is a method that delivers chemotherapy to the DIPG through a small catheter that is inserted into an artery of the brain. This specific technique is used in other types of tumors, especially retinoblastoma, tumors of the eye.
Can immunotherapy kill a tumor?
For DIPG patients, this can effectively cause inflammation and swelling in the pons that may need to be treated with steroids. The swelling and immune response can be so overwhelming that is can be worse than the tumor and have poor outcomes. Because of this, oncologists need a better understanding of the immune response and how it can be modulated before immunotherapies are used in DIPG and the pediatric population. There are high hopes that within the next few years immunotherapies will be an option for treating DIPG because, in theory, the body’s immune system should be able to bypass the BBB to help fight tumors but the side effects from that are still a very real issue.
What is proton beam?
Proton Beam Radiation is a form of radiation that uses high-energy beams to focus on tumors. It is a newer type of radiation therapy that limits damage to critical structures near the tumor that’s being treated. It also yields fewer long-term side effects than traditional radiation treatments since doctors are able to better control where the proton beams hit.
What is the treatment for dipg?
New and upcoming treatment methods for DIPG include, Proton Beam Radiation, Intra-Arterial Chemotherapy, and Immunotherapy. With more clinical trials and studies on these emerging methods, DIPG treatment options may expand.
What is the best treatment for a child with a DIPG?
Radiation therapy is the standard treatment for children with DIPGs. It is an effective palliative treatment that improves symptoms in about 80% of children with DIPGs, prolonging their survival by 2-3 months. A common complication of radiation therapy in children with a DIPG is radiation necrosis—cell death of brain tissue.
What are the side effects of steroid treatment?
Side effects from steroids can include hyperphagia—a feeling of extreme excessive hunger, immunosuppression, anxiety, insomnia, irritability, steroid myopathy, gastrointestinal issues, and fluid retention.
What is the purpose of steroid treatment?
Steroid treatment aims to improve neurological symptoms, reduce the edema surrounding the tumor that may sometimes impact the flow of the cerebrospinal fluid (CSF ), and prevent or minimize the edema induced by the initiation of the radiation treatment.
What is the treatment for radiation necrosis?
Steroids are typically used for the symptomatic treatment of radiation necrosis. Medical professionals are exploring the use of radiosensitizers, which are agents that may be given along with radiation to improve the effects of this therapy. Learn More.
What is CED in a syringe?
Convection Enhanced Delivery (CED) is a technique of inserting a small catheter directly into the DIPG, the pontine tumor, to deliver drugs. CED is a way to bypass the Blood Brain Barrier and deliver drugs at high concentrations into the DIPG tumor.
What is the purpose of clinical trials?
Clinical Trials. Clinical trials are used to test new possible treatments for cancer and to find out whether a treatment is safe; whether a treatment has the effects on cancer cells that scientists think it will; and whether it is effective at shrinking tumors, delaying growth of tumors, or making people live longer.
18-year-old new mother with terminal brain cancer flies to Mexico for experimental treatment in desperate bid to save her life
Dana Scatton, 18, was diagnosed with DIPG, an inoperable brain tumor, while seven months pregnant and was given three to nine months to live
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Diffuse intrinsic pontine glioma (DIPG) is a rare type of brain tumor that can't be operated on because of it's location within a crucial part of the brain, called the pons.