Hi everyone,
Hope all of you and your beloved ones are doing well.
Here's an update of my fiance's situation.
Minjung's been very ill for the last few weeks. She had finished radiation about a month ago, but she started to have minor but constant seizures and some problems with body coordination. She's been and still is being treated with steroids but things are just getting worse... and now she is unable to open her eyes (she still can see if we force open her eyelids).
3 days ago, she had another surgery because the doctor thought her shunt wasn't working properly. When she woke up, she could open her eyes and we all thought things were going in the right direction.. until the next day when she went back to how she was before the surgery.
Also, the current anti-seizure med (Keppra) is clearly not working at all.
So we asked the staff to tell the doctor to prescribe valproic acid as her anti-seizure med today. We'll see how the doctor responds to our request...
We want her to start Temodal and cocktail therapy as soon as possible, but every time we bring that up, the doctor keeps saying she's not ready at all for chemotherapy. We're even considering switching to other hospital. My worst fear is that Minjung may not even have a fair chance of battling this disease, which to me was the cocktail approach.
Best,
Hyunsun
So sorry to hear things aren't going well Hyunsun.
ReplyDeleteYou may want to start with an anti-seizure cocktail. Is cannabidiol (CBD) available in Korea?
There has been one case report of minocycline being effective for seizures in an astrocytoma patient with drug-resistant epilepsy.
http://www.ncbi.nlm.nih.gov/pubmed/22265576
Sulfasalazine (1 gram every day) also has some clinical evidence for potentially reducing seizure activity in GBM patients:
http://stm.sciencemag.org/content/7/289/289ra86
Also, ketone bodies are known to inhibit seizure activity:
http://www.ncbi.nlm.nih.gov/pubmed/25899847
Diet is a big quality of life issue, but if she was willing and able, a very low carb diet (10-20% of calories), plus lots of medium chain triglycerides (derived from coconut oil) could be a shortcut to increasing blood ketone levels without actually doing a ketogenic diet. (there is mouse evidence for this but currently no human evidence).
I hope and wish that her situation improves. Many kind regards,
Stephen
All these studies and more were just uploaded to the Brain Tumor Library on Google Drive. If anyone would like access to the library, please email me. (see the User Information page at top for my email address)
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