My Medical History

JANUARY 2017
Initial symptom: double vision 

FEBRUARY 2017
Check-up of eye and ear at Jakarta Eye Center, found nothing.
CT-Scan head at Jakarta MMC Hospital, found nothing.

MARCH 2017
MRI at Karlsruhe Vincentius Augenklinik, showed a lesion in brainstem.

APRIL 2017
PET-Scan at Tübingen Klinikum showed high-grade midline pontine glioblastoma/ DIPG
Doctor suggested immediate radiotherapy and chemo

MAY 2017
Underwent Robotic Stereotactic Biopsy in Frankfurt Klinikum.
Result confirmed midline pontine glioblastoma/DIPG Grade IV, with mutation H3K27M.
Installed NG-Tube.
Severe side effects after biopsy due to bleeding in to biopsy canal. Can’t walk, talk, swallow. Long term side effects: tingling pain on my left side, can’t swallow, can’t direct left arm to nose.

JUNE 2017
6 weeks radiotherapy started.
Administered with high dose dexamethasone.
NG-Tube replaced with PEG-tube.
End of June started Temodal oral chemo as my swallow ability recovered.
Side effects & symptoms: double vision worsened, tingling pain on left side, temperature sensing affected (felt cold in hot summer), sensitive to sunlight.

JULY 2017
Radiotherapy still on going.
High-dose dexamethasone.
Temodal oral chemo.
Side effects & symptoms: double vision, tingling pain on left side, temperature sensing affected (felt cold in hot summer), sensitive to sunlight, can’t walk because of leg muscles gone, cushing syndrome.

AUGUST 2017
Tapered dexamethasone.
Temodal oral chemo.
Symptoms: double vision, tingling pain on left side. Developed cushing syndrome with full moon face. Temperature sensing and sensitive to sunlight recovered. Physiotherapy trained me to walk again.

SEPTEMBER 2017
No more dexamethasone.
Temodal oral chemo.
Symptoms: double vision, tingling pain on left side. Hair loss. Cushing syndrome starts fading away. Walking getting better.

OCTOBER 2017
Temodal oral chemo.
Symptoms: double vision, tingling pain on left side, occasional right face sensitive pain. Cushing syndrome fading away. Able to climb stairs again.

NOVEMBER 2017
MRI showed tumor progressing.
Stop Temodal.
Symptoms: double vision, tingling pain on left side, occasional right face sensitive pain. Cushing syndrome fading away.

DECEMBER 2017
CCNU Procarbazine oral chemo
Symptoms: double vision, tingling pain on left side, occasional right face sensitive pain.
Cushing syndrome gone, face back to normal shape. Hair loss stopped.

JANUARY 2018
CCNU Procarbazine oral chemo
Side effects & symptoms: low leukocyte count. Double vision, tingling pain on left side, occasional right face sensitive pain.

FEBRUARY 2018
Stop CCNU Procarbazine.
Side effects & symptoms: low leukocyte count. Double vision, tingling pain on left side, occasional right face sensitive pain. Physiotherapy continues, walking is getting stronger.

MARCH 2018
MRI showed tumor stable.
CCNU oral chemo.
Symptoms: Double vision, tingling pain on left side, occasional right face sensitive pain. Physiotherapy continues.

APRIL 2018
CCNU oral chemo.
Symptoms: Double vision, tingling pain on left side, occasional right face sensitive pain. Physiotherapy continues.

MAY 2018
CCNU oral chemo.
Symptoms: Double vision, tingling pain on left side, occasional right face sensitive pain. Physiotherapy continues.

JUNE 2018
MRI showed tumor stable.
CCNU oral chemo.
Symptoms: Double vision, tingling pain on left side, occasional right face sensitive pain.

JULY 2018
CCNU oral chemo.
Symptoms: Double vision, tingling pain on left side, occasional right face sensitive pain.

AUGUST 2018
CCNU oral chemo.
Symptoms: Double vision, tingling pain on left side, occasional right face sensitive pain.

SEPTEMBER 2018
MRI showed tumor stable.
CCNU oral chemo.
Symptoms: Double vision, tingling pain on left side, occasional right face sensitive pain.

OCTOBER 2018
CCNU oral chemo.
Symptoms: Double vision, tingling pain on left side, occasional right face sensitive pain.

NOVEMBER 2018
CCNU oral chemo.
Symptoms: Double vision, tingling pain on left side, occasional right face sensitive pain. Feel weaker in walking, tired easily, speech a bit mumbling, fits of laughter, right arm feels sour.

DECEMBER 2018
MRI showed tumor progressing.
Stop CCNU.
Re-irradiation after Christmas.
Dexamethasone 8mg.
Physically deteriorating fast.
Symptoms: Double vision, tingling pain on left side, occasional right face sensitive pain, head pressure, right arm weakness, balance problem, fits of laughter, speech mumbling. 

JANUARY 2019
Re-irradiation on going.
Dexamethasone 8mg/day.
No major side effects from radiation. 
Side effects and symptoms: cushing syndrome like weight gain and full moon face start appearing. Double vision, tingling pain on left side, occasional right face sensitive pain, head pressure, right arm weakness, balance problems, fits of laughter.

FEBRUARY 2019
Avastin chemo (drips)
Dexamethasone 2mg/day
Symptoms: cushing syndrome like weight gain and full moon face. Double vision, tingling pain on left side, occasional right face sensitive pain, head pressure, right arm weakness, balance problem, fits of laughter. Speech slightly better, not so mumbled.

MARCH 2019
Avastin chemo (3rd and 4th round)
Dexamethasone 2mg/day
Symptoms: same like last month. Not getting better, not getting worse.
MRI results showed that the tumour is stable!
It is the same size as in the last MRI from December 2018 before re-irradiation, but it takes up less contrast, which indicates less blood supply to tumour cells. Probably an effect of Avastin.

APRIL 2019
Avastin chemo (5th and 6th round)
Dexamethasone 1mg/day
Symptoms: more or less same. But speech a bit more mumbling. Keep gaining weight.