In the jungle of treatments DIPG : guide for families
The resources :
We recommend https://dipg.org which provides valuable information and helps in finding trials for DIPG.
https://www.drugs.com/drug_interactions.html also helped us to check for drug interactions.
Clinical trials :
– AMXT + DFMO : Dr. Ziegler’s trial combining DFMO and AMXT1501 is currently not available for teenagers over 12 years old and weighing more than 40 kg (at MD Anderson Hospital in Houston).
Currently given intravenously. I heard that the children’s process will be available in the second half of 2022 and managed by the Connect Consortium; here is the link to the process:
https://clinicaltrials.gov/ct2/show/NCT05500508
This trial was tested on animals, then on adults and now on adolescents. The results of the laboratories show that it is the most promising but there is not yet much hindsight. Here is the email of the trial coordinator: jren1@mdanderson.org
⁃ CAR T CEL L: several trials have this target : Stanford, Seattle, Texas Children at Houston.
https://clinicaltrials.gov/ct2/show/NCT04196413
https://www.seattlechildrens.org/research/
And the Texas Children’s one is led by Dr. Patricia Baxter. This can be a good solution. Lisa Ward’s son, Jace, participated in this process which extended his life for a long time. She is a very committed mother to the DIPG cause and you can read more about her son’s story and his struggle to contribute to research.
– ONC206 + ONC201 : If your child’s tumor is in the thalamus, you may be able to try ONC206 which is believed to stay in the brain longer and be more effective than ONC201, although it has not yet his proofs. You can email glioma@kispi.Yahoo.ch and they will tell you how to register for the trial: https://clinicaltrials.gov/ct2/show/NCT04732065
Dr. Arnold in Frankfurt also offers it outside of the trial and in combination with ONC201 (for a fee); his email: assistenz@dr-arnhold.com
– ONC201 : There is also ONC201 which has been working on some children for many years and is available. ONC201 is available in France at the Gustave Roussy Institute. He showed improvement in the treatment of tumors located in the thalamus, children more than 3, 4 or 5 years after diagnosis are still alive. Like for example Anatole (http://tousavecanatole.com).
– ONC201 and Paxalisib: https://clinicaltrials.gov/ct2/show/NCT05009992, also very promising treatment, there were spectacular tumor reductions in some children. This works best when the child has the PIK3CA mutation because Paxalisib’s therapeutic pathway is PI3K. Here are the emails of the people who take care of admissions for this process.
For the trial, newly diagnosed children are eligible. Relapsers are only eligible if they have not yet had their second radiotherapy. These people have to do it on the spot.
We hadn’t been able to get Paxalisib from Kazia Therapeutics, but maybe their advice has changed.
– EVEROLIMUS + RIBOCICLIB: if your child’s tumor is located in the brainstem (bridge or other), the combination of Everolimus and Ribociclib seems to be a good choice. There are survivors with this treatment for several years (it does not work on everyone but on some children yes, they are stable for more than 3, 4 or 5 years) like this child (https://www.facebook .com/heidi.varns) and this one too (https://www.facebook.com/bigmiraclelittlegirl). Note that the combination may work but everolimus alone did not save any children. It works best if the tumor is RB+. The trial is currently complete, it exists in compassionate access in the United States. There, American oncologists prescribe it to children because the drugs are FDA-approved and the cost is covered either by insurance or directly by families. In France, I don’t think an oncologist would be ready to prescribe it, but he can seek advice from specialists at the Cincinnati hospital. They will give indications on the doses to prescribe as well as the steps to follow. Here is the link to the process: https://clinicaltrials.gov/ct2/show/NCT03387020
We tried this combination and it shrunk our child’s tumor. Unfortunately the tumor became resistant to the treatment and it no longer worked. Maybe it will work for your child. For Enguerrand, this allowed him to regain his physical faculties and he had no side effects with this treatment. We believe the lack of side effects was also due to him taking high doses of CBD and THC which increased the body’s tolerance to the drug and prevented vomiting. We had managed to get it with a foreign prescription (from any country) but had to pay for the drugs at the pharmacy.
This guide explains the trial, treatment options, side effects and everything there is to know about this combination; https://www.clinicaltrials.gov/ProvidedDocs/20/NCT03387020/Prot_SAP_000.pdf
and the doses are as follows:
– Dosage of Ribociclib (Kisqali): 170mg/m2 for 21 days then a break of 7 days. Each cycle lasts 28 days.
– Dose of everolimus (Afinitor): 1.5 mg/m2 per day
The m2 is your child’s BSA, which appears on their medical documents or it can also be calculated simply according to your child’s weight and height. To find each child’s dosage, multiply the dosages below by the child’s BSA. These assays are from the Cincinnati process.
Supplements:
Here is the list of supplements we ordered from https://pickvitamin.com and received from the United States. He took them every day. These are supplements and brands recommended by a research center specializing in DIPG.
– Pro-butyric acid targets histone mutations, specifically the H3K27m mutation.
– Berberine and the mixture of 17 mushrooms reduce the survival of DIPG cells.
– DHA and EPA are solvents. It was recently proven by an American DIPG laboratory that necrosis produces a substance that feeds the tumor and accelerates relapse. So ProDHA slows down relapse.
– Feverfew also fights DIPG cells. This discovery was made by Dr. Ziegler who formulated into the drug ACT001 which is administered in the United States, Australia and Canada.
– Boswellia extract reduces the glucose supply of glioma cancer cells and therefore limits their food intake.
Site that talks about the best supplements for gliomas:
https://www.glioblastomamultiforme.it/en/
For cannabis, more and more information points to the beneficial effects of cannabinoids in brain tumors, with CBD, legal, and THC, still illegal in France. More and more scientific articles are looking at the subject: https://pubmed.ncbi.nlm.nih.gov/?term=thc+glioma
Some children with DIPG in the USA, and in New Zealand for the most publicized, have impressive results. Little Elyse diagnosed in 2016 lives only thanks to cannabis and other natural remedies.
https://www.facebook.com/SupportingElyse/about/?ref=page_internal
https://supportingelyse.weebly.com
New studies are beginning to mention CBG, which would be more interesting than THC, therefore legal and without the psychotropic effects. Another very interesting track. DIPG specialists Dr. Carl Koschmann and Dr. Matt Dun have done research on DPG cells in vitro and in Vivo that cannabis kills DIPG cells. It starts working well when you are at 180mg/m2/day of CBD. CBD boosts THC and helps relax muscles, fight seizures, and relieve symptoms.
There is the experimentation of therapeutic cannabis in France which allows to have some good medical and free treatments.
Diet :
For the diet, after reading a lot of interesting things on this subject and testing the ketogenic diet for a few weeks, we stopped because on the one hand it is quite complex to implement but above all certain studies show a possible negative effect on certain brain tumors with multiplied progression. When in doubt, we abstained and chose a diet that mixes the following different approaches:
– the low GI diet (low glycemic index), a complicated name which translates the simple idea which consists in limiting the peaks of glycemia induced by the consumption of sugars. This does not mean no sugar, fruits are a good source of carbohydrates, but to limit certain others, in particular the carbohydrates of white pasta for example.
https://www.passionnutrition.com/ig-bas-cest-quoi/tableaux-des-ig/
– the so-called Mediterranean or Cretan diet, which has proven anticancer properties, with an abundance of plants, quality fats and whole grains.
https://www.passeportsante.net/fr/Nutrition/Regimes/Fiche.aspx?doc=mediterraneen_reg
No industrial foods, low in nutrients, harmful to the immune system, the microbiota and metabolism in general. Scientific evidence is mounting but regulation will take decades.
The objective is to use as much organic food as possible to avoid pesticides and preserve all the nutritional qualities of the products. The purpose of implementing this diet, which is already beneficial for a healthy person, is even better for a person whose body must draw on all its resources to fight cancer.
Image source (Pixabay)
