Hi Stephen,
I finally have medical data back for my dad and we had our first meeting with his oncology teams yesterday. I have summarized his medical data as well as our treatment plan below.
A couple of notes and questions upfront:
-
I didn't see anything on my dad's medical records about MGMT
-
Would greatly appreciate your feedback on the proposed drug cocktail and supplements
-
Are we missing anything?/ Dosages?
-
I would like to supplement COC protocol with some additional re-purposed drugs (particularly the first 4 in the table below. Do you have any information on dosage and how others go about getting prescriptions for these?
-
Many thanks again for your continued help.
Silvia
MEDICAL DATA:
-
Clinical synopsis
-
64M p/w expressive dyphasia and headache with likely malignant transformation of L) temporal LGG
-
2018 June generalised seizure diagnosed with left temporal mass likely LGG
-
Monitored as outpatient
-
Started on keppra and phenytoin for seizure control (self ceased keppra in
January due to rash)
-
Last seizure in April
-
July 2019 clinical synopsis
-
Presented with headaches and expressive dyphasia
-
Treatment
-
Stereotactic left temporal craniotomy and debulking of glioma (3 July)
-
Good postoperative course
-
Discharged 11 July
-
Medications
-
Histopathology results
-
Final Diagnosis: Left insula lesion: Glioblastoma. Features in keeping with IDH wild type (WHO grade IV)
-
GFAP positive
-
IDH-1 R132H negative (not mutated)
-
ATRX positive (not mutated)
-
P53 positive
-
P16 CDKN2A negative
-
Topoisomerase - approximately 20%
-
Post operative MRI
-
Small focus of residual enhancing tumour at the posterosuperior resection margin. Extensive oedema with midline shift measuring 9mm to the right and left uncal herniation has slightly improved
-
Recommending SOC treatment
-
Radiation / chemo to begin in ~3 weeks (~12 August)
-
Combined radiation & TMZ
-
Confirming targeted cavity and margin, not whole brain
-
Starting with 3 week course as patient is over 60
-
If patient is fit will recommend more aggressive 6 week treatment (TBD)
-
Followed by TMZ maintenance schedule
OUR CURRENT PLAN
-
Commence SOC protocol as prescribed by medical team in ~3 weeks
-
Complement with
-
(1) Ketogenic Diet
-
Strict 4:1 ratio, targeting Glucose / Ketone Index of 1:2 or lower (ideally 1:1 at 3mmol/ L each)
-
Calorie restricted ~900kcal/ day
-
Intermittent fasting (work towards target 2 - 8pm eating window)
-
Supplemented with Exogenous ketones (Caprilic acid and BHB salts during fasting window and can also be consumed during eating window)
-
(2) Repurposed drugs cocktail per Care Oncology Clinic (submitted info, waiting for treatment plan)
-
-
(3) Supplements
-
I didn't see anything on my dad's medical records about MGMT
Would greatly appreciate your feedback on the proposed drug cocktail and supplements
- Are we missing anything?/ Dosages?
- I would like to supplement COC protocol with some additional re-purposed drugs (particularly the first 4 in the table below. Do you have any information on dosage and how others go about getting prescriptions for these?
Clinical synopsis
- 64M p/w expressive dyphasia and headache with likely malignant transformation of L) temporal LGG
- 2018 June generalised seizure diagnosed with left temporal mass likely LGG
- Monitored as outpatient
- Started on keppra and phenytoin for seizure control (self ceased keppra in
- Last seizure in April
- July 2019 clinical synopsis
- Presented with headaches and expressive dyphasia
- Treatment
- Stereotactic left temporal craniotomy and debulking of glioma (3 July)
- Good postoperative course
- Discharged 11 July
- Medications
Histopathology results
- Final Diagnosis: Left insula lesion: Glioblastoma. Features in keeping with IDH wild type (WHO grade IV)
- GFAP positive
- IDH-1 R132H negative (not mutated)
- ATRX positive (not mutated)
- P53 positive
- P16 CDKN2A negative
- Topoisomerase - approximately 20%
Post operative MRI
- Small focus of residual enhancing tumour at the posterosuperior resection margin. Extensive oedema with midline shift measuring 9mm to the right and left uncal herniation has slightly improved
Recommending SOC treatment
- Radiation / chemo to begin in ~3 weeks (~12 August)
- Combined radiation & TMZ
- Confirming targeted cavity and margin, not whole brain
- Starting with 3 week course as patient is over 60
- If patient is fit will recommend more aggressive 6 week treatment (TBD)
- Followed by TMZ maintenance schedule
Commence SOC protocol as prescribed by medical team in ~3 weeks
Complement with
- (1) Ketogenic Diet
- Strict 4:1 ratio, targeting Glucose / Ketone Index of 1:2 or lower (ideally 1:1 at 3mmol/ L each)
- Calorie restricted ~900kcal/ day
- Intermittent fasting (work towards target 2 - 8pm eating window)
- Supplemented with Exogenous ketones (Caprilic acid and BHB salts during fasting window and can also be consumed during eating window)
- (2) Repurposed drugs cocktail per Care Oncology Clinic (submitted info, waiting for treatment plan)
- (3) Supplements
No comments:
Post a Comment