Thanks to everyone for contributing to this great resource. First a profile of our daughter's condition and then a question at the end.
Our 5 year old:
DOB 9/2/2011Brooklyn, NY9/9/2013 admission to:Weill-Cornell Medical CenterRight neck abscess lanced and drainedMarch 18th, 2016 admission to:Weill-Cornell Medical CenterMass discovered in head after experiencing headaches for a few weeksLeft occipital/parietal brain tumorOperated 3/19/2016"Full Gross Resection"Pathology determines Glioblastoma Multiforme "methylated"
Transferred to Memorial Sloan KetteringPhoton Radiation treatment for 33 days (Dr. Suzanne Wolden)Temozolomide chemotherapy for 43 daysMRI on 7/8/2016 'clear'
'Maintenance' regime of temozolomide prescribed for 12 cycles (5 days chemo/23 days off)Currently in 5th? cycle
MRI on 10/5/2016 'clear'
Genetic sequencing/testing• Cornell _ Precision Medicine• MSK _ Methylation array• MSK _ Impact Testing• Caris TestOther Diagnosis via 3rd party (non-MSK) bloodwork• Positive (via Plasma test) for CMV antibodies• Positive (via DNA test) for Herpes-6 active caseOther Treatments• Cronaxal (cronaxal.com)• Cannibas oils (THC/THCa/CBD)• Chinese Herbs (prescription pending)• Supplements- Vitamin B, C, D, L-Lysine, Curcumin, sodium selenite, paw paw, cayenne pepper w/garlic, green tea extract, etc.• Ketogenic diet since appx. June 2016
We are so grateful that our daughter is NED to-date but are considering engaging in an off-label customized peptide vaccine treatment coming out of Tubingen Germany via CeGaT. Has anyone in this community had any experiences with this?
Treatment description from their literature:
Our personalized peptide vaccination approach aims to train the immune system to recognize
specific “non-self” antigens (neoantigens) which are predicted to be specifically presented by the
patient’s tumor cells. In order to identify tumor-specific mutations, the patient’s tumor and normal
tissue sample (mostly blood) are analyzed using the modern next-generation sequencing technology.
Many of the identified tumor-specific mutations lead to alterations in proteins. Bioinformatic
prediction algorithms are subsequently applied to select those mutated peptides which are most
probably presented on the surface of the tumor cells by the patient-specific HLA molecules and
which have the potential to elicit a strong immune response. These selected peptides are synthesized
and injected as a vaccine in order to stimulate the immune system and to enhance the propagation
and activation of immune cells that specifically attack tumor cells presenting the mutated peptides.
In order to further boost the vaccine specific immune response, an immune stimulatory adjuvant (Leukine) is
co-applied at the injection site.
1) The logic of this treatment approach
3) Peptides in children
4) Experiences with FDA Personal Use Exemption program / importing off-label drugs from overseas
Again, thanks to everyone for help!