Hi,
My father (67 years) was recently diagnosed with GBM in the cerebellum after a sub-total resection. The neurosurgeon said they were able to remove almost all of the tumor mass except for some minor residue.
There were two tumors, one in the middle of the cerebellum (vermis area) and one in the left hemisphere.
The result from the histopathology says:
* High staining of Ki67 marker.
* EGFR positive staining (but doesn't say how much nor whether EGFRvIII mutated or not)
* GFAP positive staining
* Vimentin positive staining
* Mainly cytoplasmic staining of MAP II.
* No staining of IDH1 R132H mutation.
* Only few cells show staining of p53 and NSE.
* No loss of 1p36 or 19q13.
* MGMT unmethylated (9% methylation as measured with pyro sequencing)
Father has just finished 6 weeks of radio+TMZ therapy and we're scheduled to meet the oncologist on Thursday to plan the next step. I recon she will order the standard 5/23 schedule TMZ chemotherapy per the Stupp protocol.
I have tried to read up on GBM and the treatment options available. However if I understand correctly, my father's unmethylated MGMT means the 5/23 TMZ schedule is likely not effective, but maybe a metronomic TMZ schedule would be.
I have put together a cocktail of supplements:
* Curcumin (Longvida) 1000 mg/day
* Zinc 30 mg/day
* Vitamin D3 5000 IU/day
* Silibinin 800 mg/day
* Berberine 1000 mg/day
* Garlic (AGE extract) 600 mg/day
* Lycopene 20 mg/day
* Selenium (as L-selenomethionine) 200 mcg/day
I'm also looking at adding PSK/PSP as well as Pterostilbene, but haven't yet found a good supplier that delivers to Sweden.
I'm thankful to any input or advice you can give me on how to proceed.
A few questions/thoughts:
1. Would you add or remove anything from the supplement cocktail, or change the dosage?
I read that some supplements could have both negative or positive effect depending on the dosage, i.e. Quercetin. Is there a list somewhere on known/suspected supplements to avoid?
2. My father is reluctant to do anything outside of the doctor's recommendation, so I have to try to keep the supplement cocktail as simple as possible. If I understand correctly curcumin and vitamin D are considered to be two of the most promising supplements. If I have to prioritize, which of the supplements should I keep (or exchange for something else)?
3. I've noticed that many of the supplement cocktails contain three different mushrooms - Reishi, Maitake, Corioulus versicolor. Are the mushrooms basically the same (i.e. source of PSK/PSP) or do they contain completely different agents?
4. When meeting the oncologist on Thursday, should I press for some alternative to the 5/23 TMZ schedule? I.e. addition of Keppra or some other MGMT "sensitizing" drugs or should I try to press for a metronomic TMZ schedule (or both)?
5. Should I try to press for additional meds (i.e Celebrex or others) when meeting the onc? Which ones would be most important?
6. Does the pathology report give any additional useful information to help treat this or meds that I should press for/supplements to add? I'm not able to make much out of it except for the MGMT status.
7. Should I ask for any additional (selective) gene testing done on the tumor sample? If I understand the pathological report correctly, the sample is a paraffin fixed type (not frozen) so that makes it inelligible for immunovaccine samples.
8. Anything else I should think of or that you would do/recommend? As we live in Sweden, the possibility of entering trials may be limited, but I'll nevertheless ask the onc about Optune etc.
Thanks,
Peter
