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

MAY 2019
Avastin immunotherapy (7th and 8th round)
Dexamethasone 0.5 mg/day
Symptoms: speech more mumbling, face sensitive pain, right arm feels more weak. I’m not sure this progression of symptoms is caused by the tumor or if they are side effects from steroid withdrawal. I will wait and observe for this week. If it’s not getting better, then I go back taking dexamethasone again.

JUNE 2019
MRI showed that the tumor is stable. Avastin immunotherapy (9th and 10th round)
Dexamethasone 0 mg/day
Symptoms: speech a bit mumbling, nasal voice, right face sensitive pain, right arm feels weak, left arm tingling pain, double vision, walk limping. Bowel movement weak. Gum bleeds when I brush my teeth. End of this month, I fell sick. Sore throat and my lower back wisdom tooth was inflamed badly. I was on antibiotics, my dentist plans to pull it out next week.

JULY 2019
Avastin immunotherapy (11th round)
Dexamethasone 0 mg/day
Symptoms: more or less same. One round of Avastin was canceled due to my dental condition (Avastin could delay wound healing). I had my wisdom teeth pulled, a week later I received the 11th round of chemo.

AUGUST 2019
Avastin immunotherapy (12th and 13th and 14th round)
Dexamethasone 0 mg/day
Symptoms: The same, but intensity is increasing. However, have no new symptoms developed. Current symptoms are double vision, fatigue, head pressure, weak right arm, pain in my left arm, weak legs, sensitive pain on my face.

SEPTEMBER 2019
MRI showed that the tumor is stable. Avastin immunotherapy (15th and 16th round)
Dexamethasone 0 mg/day
Symptoms: pretty much the same. (Speech a bit mumbling, nasal voice, right face sensitive pain, right arm feels weak, left arm tingling pain, double vision, walk limping, bowel movement weak, head pressure, neck and back stiffness, balance issue, fatigue).

OCTOBER 2019
Avastin immunotherapy (17th and 18th round)
Dexamethasone 0 mg/day
Symptoms: pretty much the same. (Difficult to speak/mumbling speech, nasal voice, right face sensitive pain, right eye sensitive pain, right arm feels weak, left arm tingling pain, double vision, walk limping, bowel movement weak, head pressure, neck and back stiffness, balance issue, fatigue).

NOVEMBER 2019
Avastin immunotherapy (19th and 20th round)
Dexamethasone 0 mg/day
Symptoms: pretty much the same. (Difficult to speak/mumbling speech, nasal voice, right face sensitive pain, right eye sensitive pain, right arm feels weak, left arm tingling pain, double vision, walk limping, bowel movement weak, head pressure, neck and back stiffness, balance issue, fatigue).

DECEMBER 2019
Avastin immunotherapy (21st and 22nd round)
Dexamethasone 0 mg/day
Symptoms: pretty much the same. (Difficult to speak/mumbling speech, nasal voice, right face sensitive pain, right eye sensitive pain, right arm feels weak, left arm tingling pain, double vision, walk limping, bowel movement weak, head pressure, neck and back stiffness, balance issue, fatigue).

JANUARY 2020
MRI showed that the tumor is stable. But it showed also there’s a lesion in my cerebellum. It could be a pseudo progression, or it could be a real tumor. So I’m scheduled to do an additional MRI in February. Avastin immunotherapy (23rd and 24th round)
Dexamethasone 0 mg/day
Symptoms: the same, but intenser. (Difficult to speak/mumbling speech, nasal voice, right face sensitive pain, right eye sensitive pain, right arm feels weak, left arm tingling pain, double vision, walk limping, bowel movement weak, head pressure, neck and back stiffness, balance issue, fatigue).

FEBRUARY 2020
MRI showed that the tumor in brainstem is stable. But it showed also a lesion in my cerebellum grow bigger. However doctor said it looks like a necrosis (dead cells from the treatments). To confirm it I need to do FED PET scan. Avastin immunotherapy (25th and 26th round)
Dexamethasone 2 mg/day
Symptoms: the same, but intenser than last month. (Difficult to speak/mumbling speech, nasal voice, right face sensitive pain, right eye sensitive pain, right arm feels weak, left arm tingling pain, double vision, walk limping, bowel movement weak, head pressure, neck and back stiffness, balance issue, fatigue). So I take steroid again and it eases my discomfort.

MARCH 2020
Avastin immunotherapy (27th and 28th round)
Dexamethasone 2 mg/day
Symptoms: the same, but intenser than last month. Every movement feels heavy. I have difficulty speaking, my voice sounds nasal, I have difficulty walking, head pressure, double vision, balance issues, bowel issues to the point where I can’t control my bowel, tingling pain on my left arm, weakness of my right arm and many fits of laughter.

APRIL 2020
Avastin immunotherapy (29th and 30th round)
Dexamethasone 6 mg/day
Symptoms: I am getting worse pretty rapidly, day by day. Dexamethasone doesn’t slow down my symptoms from worsening. There are no new symptoms, but all my symptoms get more intense. It pretty much limits everything I want to do. Every movement feels heavy. I have difficulty speaking, my voice sounds nasal, I have difficulty walking even with a rollator at home, I have severe head pressure, double vision, balance issues, bowel issues to the point where I can’t control my bowel anymore, tingling pain on my left arm and on my face, weakness of my right arm, and many fits of laughter. I need to be in a wheelchair when leaving my flat.

MAY 2020
Avastin immunotherapy (31th and 32nd and final 33rd round)
Dexamethasone 14 mg/day

PET scan showed progression in brainstem, cannot do re-irradiation.

Doctor will stop the Avastin. It no longer works. So now there’s no treatment available anymore. I am now getting palliative care towards the end.
Symptoms: I am getting worse pretty rapidly, day by day. Dexamethasone doesn’t slow down my symptoms from worsening. There are no new symptoms, but all my symptoms get more intense. It pretty much limits everything I want to do. Every movement feels heavy. I have difficulty speaking, my voice sounds nasal, I have difficulty walking even with a rollator at home, I have difficulty moving out from sofa/bed, I have severe head pressure, double vision, balance issues, bowel issues to the point where I can’t control my bowel anymore, tingling pain on my left arm and on my face, weakness of my right arm, and many fits of laughter. I need to be in a wheelchair when leaving my flat.

JUNE 2020
Now, I have palliative care. 
No further treatment is available for me.
I have anxiety drugs in case I come to difficulty with breathing. 
A palliative care nurse came to visit and will assist us with what we need at home.

I’m not able to see my oncologist anymore. 
We didn’t have contact for almost a month. After another email, she finally got back to us.
She was apparently transferred to another department, no more in oncology department.
That’s why we didn’t hear from her.
I have no oncologist taking care of me now.
But my resident doctor doctor will come to visit us on Monday.

I am getting worse rapidly, day by day. 
For now, I increased dexamethasone to 20!mg daily. 8 mg after breakfast (9 am) , 6 mg after lunch (12 pm ) 6 mg after coffee (3pm)

It doesn’t slow down my symptoms from worsening. 

Everyday I have to deal with feeling as if my head is in a cloud,
I no longer can speak,
I need eye drops all the time,
I communicate with Tobias mostly by typing on my phone or by pointing fingers.
I no longer can walk even with a rollator at home, 
I need help to go to the toilet,
I need help with showering,
I no longer can get out of bed alone,
I no longer can move my body, 
I have severe head pressure, 
I have a very blurred vision, 
I have balance issues,
I no longer can get up from the sofa by myself, even thought Tobias elevated it with two bricks from the DIY store.
I no longer can sit straight on sofa,
I have bowel issues to the point where I can’t control my bowel anymore, 
I have tingling pain on my left arm and on my face 24/7,
I have weakness on my right arm,
I have many fits of laughter. 
I need help with everything.
I lost all my functions.