I'm reposting Daninha21's recent comment here, as it deserves its own thread.
It was all very confusing to us but Dana Farber after reading and seeing the pathology report decided to cancel surgery for a second biopsy as they consider his tumor a grade 4 glioma. We decided to try TMZ again and I'm trying to learn about the cocktail approach but I'm not sure we are doing it right because of all the different components of this tumor. I'm not sure what to go by but his tumor reoccurrence is really big and it went from left frontal lobe to right frontal lobe. This is what he takes:
Vit D 5000 u once daily
Genistein 125mg every other day
Milk Thistle 250mg twice daily
Fish oil 5000mg divided in 2 doses daily
Lycopene 20mg daily
Green tea Extract 850mg twice daily
Resveratrol 250mg twice daily (will be switching to a 500mg cap once daily)
CoQ10 200mg twice daily
Garlic 600mg daily
Boswellia 400 mg twice daily
Curcumin 400mg twice daily
Quercetin 200 mg twice daily
Bromelain 200mg twice daily (to help absorb curcumin)
Anti Fatigue complex daily (w/ vit D, Mag, Selenium, ALC, ALA)
Multivitamin daily
Coriolus versicolor 1800mg nightly
Melatonin 20mg nightly
TMZ 460mg 5 days on/ 23 days off
Keppra 500mg twice daily
Metformin ER 1000mg daily
Omeprazole 20 mg daily (40mg twice daily 3 days before TMZ until 2 days after)
Simvastatin 20mg daily (not sure about this one)
Celebrex 200mg daily (just stopped since there was a drop on WBC from 4.9 to 3.6) might add again, not sure.
Is there anything you recommend? His oncologist was opposed to anything even the supplements, so now we have a different doctor that is working with us behind the scenes but we both dont know enough and are trying to learn as we go which sometimes it makes her uncomfortable with certain meds
Given everything you've said, I think the most important thing to find out in terms of pathology is IDH1 status. I would ask whether this testing has been done, and if not, request it. It is a relatively simple test, performed on a tumor tissue sample.
ReplyDeleteRecent evidence suggests most so-called oligoastrocytomas can be re-classified as either oligodendroglioma or astrocytoma on the basis of genetic alterations in the tumor.
IDH1 mutation, loss of ATRX expresssion, p53 mutation or high expression of p53 -> astrocytoma (IDH1-mutant) diagnosis
IDH1 mutation, codeletion of a single copy of BOTH chromosome arm 1p and 19q, TERT promoter mutation, CIC mutation, FUBP1 mutation -> oligodendroglioma diagnosis
IDH1/2 wild type (no mutation), EGFR amplification/mutation, TERT promoter mutation, gains of chromosome 7, loss of chromosome 10, PTEN mutations -> glioblastoma diagnosis, or "glioblastoma-type" tumors of lower grades.
It is easier to strategize and plan a cocktail if we know what sort of tumor we're dealing with (most likely one of the three types above).
I would recommend immunohistochemical (IHC) testing of the tumor tissue for IDH1 R132H, ATRX, and p53. These may or may not have been done already. Always request copies of all pathology reports.
I did request the testing and was told that one testing couldn't be done due to technical issues, and was told we can talk to his doctor about in the next appointment in December. To be honest, I just get very discouraged at times. Since his doctor left the hospital, I feel things are just not the same. I know they are all busy now with only one doctor attending all brain tumor patients and also working in the inpatient neurology department but for us its my husbands life on the line. The little things they mess up makes me upset, like wanting us to maybe delay TMZ cycle 6-7 days because the doctor can't see him until them. I feel like we are on our own and we need to figure things out by ourselves.
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