Stephen W edit:
this info was taken from page 2 of the Glioblastoma...Our Cocktail & Story thread at Cancer Compass. The post is dated November 13, 2013. The "if I were to do this again" part at the bottom is therefore not necessarily accurate today, but we will let Rich make changes as he sees fit.
- Temodar (temozolomide), 80mg/day (calculated by 40mg/m**2/day)
- Avastin (bevacizumab), 10mg/kg at 21 day intervals
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Chloroquine Phosphate, 250mg/day
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Celebrex (Celecoxib), 600mg/day
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Verapamil, 480mg/day
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Accutane (13-cis-retinoic-acid), 160 mg/day, 14 days on, 7 days off
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Tagamet (cimetidine), 800mg/day
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Melatonin, 20mg/day
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Coriolus versicolor extract PSK/PSP, 3g/day
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Maitake-D mushroom extract, 1200mg per day
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Reishi mushroom extract, 2.5g per day
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Resveratrol, 20mg per day
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Green Tea Extract, 4g per day
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Selenium, 200mcg per day
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Soy Extract, 5g per day
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Fermented Papaya Extract, 1000mg/day
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Silibinin extract, 2g/day
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Curcumin/tumeric extract: 800mg/day
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Gamma-Linolenic Acid (GLA) Extract, 3g per day
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Omega-3 Fish Oil Extract, 3gm per day
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Fresh aloe vera (drink/mixed aloe, water, honey and grappa),1 cup/day
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Standard multivitamin capsules, time-release
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Vitamin D, 10,000 IU/day
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Aspirin, 200mg per day
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Brewed Green Tea, aprox. 2 liters per day
But
if I were to do this again, I would now also consider adding (at
least) the following:
-
Metformin, which regulates uptake of glucose
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Disulfiram, which inhibits p-glycoprotein extrusion pump and block
glioma cell signal pathways
-
DCA, which inhibits glycolysis
-
Valproic acid (depakote), a known HDAC inhibitor, and potentially
reactivates p53
-
Chlorimipramine, which selectively blocks glioma mitochondrial
function
How would this cocktail list change if the tumors are methylated tumors?
ReplyDeleteMost of these agents are not dependent on MGMT status. The exception being that standard-dose TMZ is far more likely to be effective with methylated MGMT.
ReplyDeleteDo you have a cocktail list for the MGMT tumors?
DeleteWelcome! If you send me an email (my address is on the user information page), I'll add your name to the list so you can start a new post (if you like).
DeleteThe only drugs that I would consider including or not including based on MGMT status would be DNA-alkylating chemotherapies such as Temodar, CCNU (lomustine), and BCNU.
There are some drugs that we include in the hopes of inhibiting MGMT (for unmethylated cases) such as disulfiram, fluoxetine, Keppra, although these drugs have other mechanisms of action as well and I would not exclude them on the basis of MGMT status.
Thanks Stephen! This brain cancer is so complicated, its hard to know where to even begin understanding it. I only have my husband taking a few meds (metformin, celebrex (which Im worried about it) simvastatin and keppra) and supplements as I've been going by other people's list but now Im wondering if Im doing it wrong because my husband GBM is MGMT and also 19p 1p depletion (whatever that means). Is there an area here where people post their GBM status (MGMT, IDH, etc) together with their cocktail approach and how long they had it?
DeleteThe fact that your husband has the 1p/19q codeletion is a good thing. This means the tumor should probably be classified as an oligodendroglioma, regardless of the grade, and is likely IDH1 mutated. Was the tumor ever tested for IDH1 status? This type of tumor is quite responsive to chemotherapy, such as TMZ or the PCV regimen (though I have suspicions that the vincristine may do more harm than good).
DeleteYou may be interested in the case of Anders Ferry, as his tumor was also initially diagnosed as a grade III oligodendroglioma, with 1p/19q codeletion. For information on his cocktail from a few years ago, click on his name in the labels section on the right side panel.
This is what it says on the pathology report: Mixed Anaplastic oligoastrocytoma (grade 3-this was 4 years ago) if it were not for the prominent oligodendrogial component it would be diagnosed as glioblastoma (again, that was 4 years ago). Now Dana Farber looked at the sample and pathology report and said it was a grade 4 all along (very confusing!) this happened when we were thinking about clinical trials. Methylation score is 7.0. FISH analysis showed loss of 19q but NOT 1p (so more astrocytoma behavior) IDH status Im not sure, going by the what the doctor wrote on a piece of paper this is my interpretation -> decrease mutation (IDH 1/2)
DeleteIt 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
MGMT is an enzyme that repairs DNA-damage caused by DNA alkylating agents. The only such agent on this list is temozolomide. Methylation of the MGMT gene causes it to be "silenced" or inactivated, meaning that it is not copied and translated into the MGMT protein/enzyme.
ReplyDeleteStephen, may I ask what your IDH1 status was? My husband is unmethylated and IDH1 not mutated.
ReplyDeleteHana, I have not been diagnosed with brain cancer. My research started on behalf of a close friend who was diagnosed 3.5 years ago with an IDH1-mutant anaplastic astrocytoma. She is still doing well, fortunately.
DeleteI see Stephen, thank you.
DeleteDo you know about some GBM survivor that was unmethylated and IDH1 not mutated? (worst genetics, I know)
Rich's tumor was completely unmethylated for MGMT, but was not tested for IDH1. At the time, the IDH1 mutation had not yet been discovered in glioma.
DeleteIt depends what your definition of long-term survivor is. Anything over 10 years would certainly qualify for GBM.
Cheryl Broyle's (diagnosis 2000) GBM was apparently MGMT unmethylated and "IDH1 negative" although it's possible there was a rare alternative IDH1 mutation or an IDH2 mutation that was not tested for.
These are the two cases I'm aware of, although I'm sure there's more, especially for those who've joined the better clinical trials. However until very recently clinical trials were neither testing for, nor reporting IDH1 status.