Posted on behalf of a caregiver:
My sister (aged 42) has glioblastoma grade IV, IDH mutated.
Previously diagnosed with an infiltrating astrocytoma (WHO grade II) in 2015 in the left inferior front temporal region, now transformed to glioblastoma.
She had 2 surgeries in 2016 to take out as much of the tumour as possible, and followed up with radio and chemo. She has been taking the following medication:
Her MRI has been coming back ok (I.e. tumour size remains d same, not increasing nor reducing), most recent MRI being in Feb.
However since late last year, she has been losing her balance and falling.
Previously diagnosed with an infiltrating astrocytoma (WHO grade II) in 2015 in the left inferior front temporal region, now transformed to glioblastoma.
She had 2 surgeries in 2016 to take out as much of the tumour as possible, and followed up with radio and chemo. She has been taking the following medication:
Anti-seizure
Levetiracetam – 1000mg/morning and night
Apo-clobazam – 10mg/ night
Vimpat (Lacosamide) – 10mg/morning and night
Anti-cancer
Disulfiram – 500mg/morning
Copper (Bisglycinate) – 10mg/morning
Disulfiram – 500mg/morning
Copper (Bisglycinate) – 10mg/morning
Niacin (No Flush) – 500mg/morning
Anti-"pup" medications
Metamucil fibre therapy
RestotaLax
Supplements
Boswellia – 307mg (115 mg Boswellic acids)
Turmeric / Curcumin (Anti-inflamatory) – 500mg twice daily
Mushroom Complex 2-3 pills twice daily
Melatonin – 10 mg
Green Tea Extract – 300mg
OMEGA 3 FATTY ACID (FISH OIL) 3000mg daily
COENZYME Q-10 -100mg once daily
Repurposed Meds for brain tumor
Metformin – 500mg X 2 tables
Mebendazole – 100mg X 2 tables
Atorvastatin – 40mg X 2 tables
Doxycycline - 100mg (alternantes monthly)
Her MRI has been coming back ok (I.e. tumour size remains d same, not increasing nor reducing), most recent MRI being in Feb.
However since late last year, she has been losing her balance and falling.
My question for this group is if anyone here has experienced something similar? I’m seeking some insight on why MRI is clean but balance is worsening.
@Stephen, I’d appreciate if you have any comments on this.
Any help will be appreciated.
Also if you have any advice on something else we can try kindly let me know.
Many thanks
Vertigo/dizziness and balance issues can be a side effect of some drugs:
ReplyDeletehttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3853661/
Minocycline is one drug that can cause such symptoms, but I have not seen the same reported for doxycycline.
What treatments has she had (besides the cocktail) since the tumor came back as a glioblastoma?
Very often, low grade IDH-mutant astrocytomas treated with temozolomide will recur later as hypermutated grade IV glioblastomas (this happened to a friend of mine). The only way to find out if the tumor is hypermutated is to pay for DNA sequencing and/or test for mismatch repair defects. Foundation Medicine can do this (USA-based company), or Caris, or other companies depending on your location. The testing costs several thousand dollars. We felt it was important to have such testing done because if the tumor is indeed hypermutated, further temozolomide treatment will likely be ineffective, and may even be counterproductive, whereas a nitrosourea such as lomustine (CCNU) may be effective, as it was in my friend's case. Also, in the USA, the PD-1 inhibiting antibody pembrolizumab (Keytruda) is approved by the FDA for any recurrent solid tumor with mismatch repair deficiency (which is typically the cause of hypermutated recurrences in TMZ-treated gliomas).
I haven't posted for so long that I can't remember if this is where to put this post. Anyway, I have 4 months worth or TMZ that has not been opened. Downside is it expired 2/2020. Not real sure that matters since recent. If anyone is in need, I will be happy to mail in US at no cost for items or mail.
ReplyDeleteStay safe.
Candy
Hello, please tell me, do you still have TMZ? in what dosage and in what quantity?
DeleteThanks you
I'll send Candy an email to look into this for you.
DeleteOK, thanks!
DeleteI have a similar cocktail for a g3 oligo am still doing tmz cycles. 3 months ago I had added on Disulfiram and then 2 months ago had a significant increase in seizures and balance problems. I took out the disulfiram and COC meds and had another MRI but was still was having more issues.
ReplyDeleteI had done Keto diet last year with radiation and so a few weeks ago I pulled out my glucose tester and found that I was going hypoglycemic with readings as low as 60! So I just modified my diet, monitored a bunch and at more food and it my readings stabilized and I'm feeling way better.
So I don't know if it was caused by one of the meds or not, but tracking glucose might be worth a try.