Dear Stephen, dear all,
Anatole, my 8 year-old son has been diagnosed in May 2018 with a diffuse midline glioma on the right thalamus. We are French and based in Stockholm, Sweden. We followed the proposed protocol with the local medical team who works in partnership with Gustave Roussy institute in France but we want to go further now, and we need your advice. The local medical team is not very aware of alternative medication but is willing to help.
Molecular status of the tumour:
BRAFV600E and H3K27M mutation
NF1 and MLH1 mutation
We have little chance to find new targetable alterations by a deeper sequencing. It is possible now that the V600E BRAF mutation is lost in the resistant cells but anyway we do not think it is wise to treat with a V600E BRAF inhibitor which in our experience could speed up tumor growth.
18/05/09 Diagnosis: MRI tumour size 3.3x3.7x3.7cm, unusual calcification
18/05/16 Biopsy, leading to light hemiparesis
Proton-therapy 18/07/02-18/08/13, 1.8Gy x 30 = 54Gy. Almost fully recovered from hemiparesis
18/09/07 MRI tumour size about 4cm
18/09/19 Beginning og Dasatinib (100+70mg/day), after 18/11/06 alternating with Everolimus (5mg/day) every 2 weeks (Biomede protocol)
18/09/22 Beginning of hemiparesis
18/10/03 Wheelchair for walks more than 20m
18/10/12 MRI tumour size 5 to 6cm unsure if pseudoprogession
18/10/22 Beginning of Bevacizumab then once every 2 weeks
18/11/06 Beginning of Everolimus
18/12/03 MRI tumour size 4 to 5cm unsure if pseudoprogession
18/12/17 Crook for walks less than 20m
19/01/14 MRI tumour size 5x6x5cm
19/01/22 Stop all current chemo (Dasatinib and Everolimus, last Bevacizumab 19/01/02)
24/01/24 PET scan (methyonine)
New plan established by Gustave Roussy Institute: Mebendazol, investigation for debulking of calcification before re-irradiation, eventually ONC201
Any comment on this plan?
Any comment on this plan?
Anatole is 30kg 132cm
D3 vitamin since 18/12/24: escalading from 40µg/d to 100µg/d now
Fish oil since 18/12/24: 1g
Melatonin since 19/01/10: escalading from 2mg/d to 5mg/d now
Turkey tail since 19/01/25: 500mg/d
We plan to add soon:
Longvida Curcumin: 800mg/d
Milk thistle: which dose would you recommend?
Green tea extract: which dose would you recommend?
Broccoli sprouts: which dose would you recommend?
Metformin: Is it worth considering for a child?
Anything else you would find suitable considering his condition (celebrex, chloroquine, clomipramine, berberine, selenium, probiotics, etc?
We follow a light low carb diet now (no refined sugar or flour, very limited sugar, no processed food, only bio food). We are planning to begin a ketogenic diet soon, we are ready to change all our habits. We will contact a dietetician specialist in this diet. Anybody else with an experience of ketogenic diet with children?
Thanks to all of you for your precious help, any contribution could help.