Tuesday, 29 December 2015

Matjaz's cocktail - grade 2 Oligodendroglioma

Hello all!

Ok, so here is my cocktail and a little backstory:

because of mild headaches at back of the head/in the neck that started in February 2015 I was sent to MRI (neurologist was suspecting some kind of vertebrae deformation) in May 2015. It unexpectedly showed tumor in right temporal lobe (premotor cortex, some of it in insula) - while I was waiting to get the MRI the headaches went away, so it was kinda incindental discovery.

Underwent awake surgery with 100% resection with small safety margin of healthy tissue around the tumor. Tumor volume around 8,5 cm^3, pathology showed "grade 2 oligodendroglioma, IDH mutated, cells do not express GFAP , Neu N, internexin a and p53. The expression of ATRX is retained. Absence of overexpression of cMet . The Ki67 proliferation index is estimated at 1%. 1p/19q codeletion and no EGFR overexpression"

Surgery and following MRIs:

1st December 2015 - Complete Resection which is also confirmed with MRI ~30 hours after surgery
March 2016 - Clear MRI, small area of scar tissue
September 2016 - No change

My cocktail (for long term maintenance) at the moment is:

5x 600mg Mushroom Science Coriolus Super Strength
1x 4,5mg LDN
1x 5000 IU Vitamin D3
2x 850mg Metformin

4x 500mg Nutrivene Longvida Curcumin
2x 1000mg Super Omega 3

1x 200 mcg Selenium
1x 10mg Melatonin
17 mg/kg/day DCA (discontinued for 6 months or so because of  neurotoxicity - on Visual Evoked Potentials exam there was significantly lower nerve conductivity as should be, probably because of ~9 months DCA administration).

The post is updated regularly after every MRI (every 6 months for now). Also I am verry happy to receive any suggestions or answer any questions!

Best regards,

Monday, 28 December 2015

Switching Tamox for Letrozole

Hi All!

Since my wife is in process of recovering from her last surgery (3rd) on OCT-19 , she is doing rehab sessions for the secuels (hemiparesia left side), so her ability to move is limitated for now. So we are thinking switch High Dose of Tamoxifen (160mg daily) for Letrozole. The thing here is I'm not able to find any paper with and estimated/recommended dosage for glioma.

If anybody can enlighten us, any comments will be appreciated.


Very interesting and I agree is a potentially productive treatment against GBM.


Sunday, 27 December 2015

Drug Side Effects

Jeremy has been experiencing headaches and double vision for the last month or two.  He just told me about these a few days ago.  Not too concerned about recurrence or progression since his last MRI a month ago showed stability, and possibly some regression of the remaining non enhancing tumor, although I accept this as a possibility.  I suspect it is more drug related.  I have taken him off chloroquine and minocycline, the two drugs that seem most likely to cause this.  Has anyone had problmes with disulfiram or prozac causing these problmes?  The other three meds he is on is Celebrex, cimetidine and metformin.  Seems unlikely these would be responsible for double vision, but possibly headaches.  He is also on DCA and Artemether, but I have not found double vision or headache associated with these.

Anyone with any thoughts on this?  He will be going to an ophthalmologist soon and will contact his NO next week.  Thanks for the input.

Wednesday, 23 December 2015


I've just added auranofin to my top 10 GBM drug list.  It is a thioredoxin reductase inhibitor (an enzyme which is strongly overexpressed in GBM), and a broad inhibitor of the PI3K/Akt/mTOR pathway in lung cancer cells, and an inhibitor of phosphofructokinase, one of the most important enzymes in the glycolytic pathway.  It has shown synergy with disulfiram in a recent hepatocellular cancer mouse model.

Two clinical drugs deubiquitinase inhibitor auranofin and aldehyde dehydrogenase inhibitor disulfiram trigger synergistic anti-tumor effects in vitro and in vivo.

It is included in the CUSP9 protocol at the dose of 3 mg twice daily (starting dose 3 mg once daily).

Tuesday, 22 December 2015

Nasal drug dont need to worry about blood brain barrier


Interesting article

Coriolus Super Strength vs Coriolus PSP

Can anyone tell me if it makes any difference to use coriolus PSP instead of coriolus super strength? The price difference is double on the mushroom website and the strength difference is only 200mg per capsule.

Friday, 11 December 2015

Methionine and cystine reduction

Any opinions?

Thursday, 10 December 2015

Fasting prior to chemo cycles

Hi everyone,

Has anyone tried this? I read about 48 hour fasts online and I wonder if brain patients have tried it.
Any feedback from your NO's?

Thanks so much!

Society for Neuro-Oncology (SNO) 2015 abstracts - free download

These are already in the Brain Tumor Library, but may also be downloaded for free here.

Tuesday, 8 December 2015

Hi all,

I am half way through my 4 week holiday from treatment and starting 6 months of TMZ on 23rd December. Fortunately things are on a roll with TTF and IOZK as i am aiming to do all 3 approaches (TTF, IOZK, TMZ+Cockatail) concurrently. What im a bit concerned about is continuing my cocktail while i undergo Newcastle Virus and DC immune therapy. I was wondering if anyone has any advice on what drugs i should perhaps stop/start taking in the run up to IOZK which begins on 30th December. I also thought i would use this opportunity to finally share my cocktail.
Thanks, Mark.

Male 54, primary GBM, over 90% resection on 3rd September 2015,MGMT mythelated at 36%, ATRX positive, IDH1 wild type (negative?), no P53 (only very weak focal expression), and no testing for EGFR and other indicators.

This is what im taking (dosages per day):

Vit D - 9000 IU
Longvidia Circumin - 1800mg
Echinacea - 800mg
Astragalus - 800ng
Grapeseed extract - 200mg
Selenium - 400 ug
Omega 3 - 3000mg
Pterostilbene - 250mg
Enhanced Rhodiala complex with Russian Gingseng - 2 tablets = (166mg rhodalia, 250mg ashwangandha, 320mg gingseng )
Cruciferous vegetable extract - 2 tablets
Probiotic complex - 1 tablet
CoQ 10 alpha lipoic acid - 1 tablet
Vit B12 -100 ug
Milk Thistle - 2 times 5mls
Boswellia Serrata - 2 times 5mls
Corioliolus mushroom - 3 grams
Reishi mushrooms - 2 grams
Maitake mushrooms - 9 grams
Melatonin - 20 grams
Vit B1 -500mg
THC/CBD oil -  1gram (not oral)

Metformin - 1500mg
Chloroquine - 250 mg
Celebrex - 600mg
Disulfiram (only on chemo days) - 250 mg
Keppra - 1000mg
Prozac - 20mg
DCA - Up until a week ago 20mg per kilo but experienced slight trembling and numbness , off for a week now and resuming at 10mg per kilo tomorrow

GBM Therapies Defined by Category

Hi Friends,

I came across this article explaining all the various therapies (defined by category) now available for GBM.


Brain Cancer

In the United States, brain cancer accounts for 1 in every 100 cancer diagnoses. There are several types of brain cancer, classified by the type of cell from which they originate. Gliomas, which originate in glial cells that support and protect neurons, account for about 70% of brain cancers. Astrocytomas originate in glial cells called astrocytes, the multitudinous star-shaped cells involved in cell repair and nutrient transport. Meningiomas are tumors that begin in the thin membranes (called meninges) covering the brain and spinal cord. As brain tumors grow, they can cause a wide array of challenging symptoms for patients due to pressure in the brain and/or interference with normal brain function. Most brain cancers are invasive and may crowd out healthy cells and damage normal tissue, although they rarely spread to other parts of the body.
In children, brain cancer is the second most common form of cancer, and accounts for 23% of all pediatric cancers in the United States. It is the most common form of solid tumor and the leading cause of death from cancer among children.


It is estimated that 1 in 161 individuals born today will develop brain or nervous system cancer at some point in their lives. In the U.S., 22,850 men and women are diagnosed with cancer of the brain and nervous system every year, and 15,320 deaths are caused by the disease. Although significant advances have been made in understanding the biology of brain cancers—as well as in tumor diagnosis, treatments, and quality of life of patients with the disease—the mortality rate for brain cancer has remained steady for more than 30 years. The cause of brain tumors is not yet understood.
Glioblastoma (GBM) is the most dangerous and aggressive form of brain cancer. GBM patients typically have short life expectancies; few will live to see three years after diagnosis. For newly diagnosed GBM patients treated with current standard of care, median progression free survival is just 6.9 months, and median overall survival is 14.6 months. Only a quarter of newly diagnosed GBM patients survive for 24 months, and fewer than 10% of patients survive more than 5 years.


In 2005, the chemotherapy temozolomide (Temodar®) was approved to treat newly diagnosed GBM patients based on a randomized phase III clinical study that showed that it added 2.5 months to the median survival of patients. However, over 50% of GBM tumors generate a DNA repair protein called MGMT (methylguanine methyltransferase) that effectively neutralizes temozolomide chemotherapy. These patients derive negligible therapeutic benefit from the addition of temozolomide to their treatment. In 2009, bevacizumab (Avastin®) was granted accelerated approval for the treatment of GBM patients whose cancers had recurred, based on results from two phase II studies. Although 26% of patients who received bevacizumab had partial responses, most lasted less than six months and there was no evidence of improvement in overall survival.


Current immunotherapies for brain cancer fall into six broad categories: cancer vaccines, checkpoint inhibitors, oncolytic virus therapy, adoptive cell therapy, adjuvant immunotherapies, and monoclonal antibodies.

Cancer Vaccines

Cancer vaccines are designed to elicit an immune response against tumor-specific or tumor-associated antigens, encouraging the immune system to attack cancer cells bearing these antigens. Clinical studies include: 
  • Rindopepimut (Rintega®, CDX-110) is a therapeutic vaccine targeting a mutant peptide called EGFRvIII, which is expressed in approximately one-third of glioblastoma tumors. The FDA granted rindopepimut a Breakthrough Therapy Designation—which expedites the process for getting FDA approval—for patients with EGFRvIII-positive glioblastoma, based on a randomized, placebo-controlled phase II trial (ReACT) indicating that rindopepimut has a survival benefit among recurrent patients. An international phase III trial of rindopepimut in newly diagnosed glioblastoma completed its enrollment in December 2014 and is no longer accruing (NCT01480479).
  • A randomized, placebo-controlled phase III trial testing DCVax-L, a dendritic cell vaccine derived from a patient’s own tumor, for newly diagnosed glioma (including glioblastoma/glioblastoma multiforme and astrocytoma) (NCT00045968).
  • A randomized, placebo-controlled phase IIb trial studying ICT-107, a dendritic cell vaccine that targets six different antigens associated with glioblastoma multiforme, in patients with newly diagnosed glioblastoma following resection and chemoradiation (NCT01280552; this study is ongoing, but not recruiting participants).
  • A phase II trial testing the HSPPC-96 vaccine in patients with recurrent glioma that can be removed with surgery (NCT01814813).
  • A phase II trial testing ERC1671, a cancer vaccine composed of a combination of glioblastoma tumor cells, in patients with recurrent or progressive, bevacizumab-na├»ve glioblastoma multiforme or gliosarcoma (NCT01903330).
  • A phase I/II trial testing SL-701, a vaccine comprised of multiple synthetic peptides, in adult patients with glioblastoma multiforme in first recurrence (NCT02078648).
  • A phase I trial testing ICT-121, a dendritic cell vaccine pulsed with CD133, which is expressed on glioblastoma and glial stem cells, in patients with recurrent glioblastoma multiforme (NCT02049489).
  • A phase I trial testing two adenoviral vectors, with one testing HSV1-TK, which is expected to kill brain cells and expose the tumor antigens, and one testing Flt3L, a cytokine known to cause proliferation of dendritic cells, in patients with newly diagnosed high grade glioma (NCT01811992).
  • A phase I trial testing a dendritic cell vaccine administered with imiquimod, a Toll-like receptor 7/8 agonist, in adult and pediatric patients with glioma (NCT01808820) and pediatric patients with brain cancer (NCT01902771).
  • A phase I trial testing a tumor vaccine given with the adjuvant Montanide (ISA 51) in adult patients with newly diagnosed glioblastoma (NCT01702792).
  • A phase I trial testing a tumor vaccine that targets the brain tumor initiating cell (BTIC) line, GBM-6, given along with imiquimod, a Toll-like receptor 7/8 agonist, in pediatric patients with diffuse intrinsic pontine glioma (NCT01400672).
  • A phase I trial testing a personalized cancer vaccine, NeoVax, in adult patients with MGMT-unmethylated, newly diagnosed glioblastoma (NCT02287428).
  • A phase I trial testing ADU-623, a vaccine targeting the EGFRvIII and NY-ESO-1 antigens, in patients with treated and recurrent grade III/IV astrocytomas (NCT01967758).
  • A phase I trial testing a dendritic cell vaccine for patients with newly diagnosed or recurrent glioblastoma (NCT02010606).
  • A phase I trial testing a cytomegalovirus vaccine given along with basiliximab (Simulect®), an antibody that targets an immune-suppressing molecule in tumors, in patients with newly diagnosed glioblastoma multiforme (NCT00626483).
  • A pilot study to test glioma antigen peptides given along with Poly-ICLC (Hiltonol®), a Toll-like receptor 3 agonist, in pediatric patients with glioma (NCT01130077).
  • A pilot study testing glioma antigen peptides given along with imiquimod, a Toll-like receptor 7/8 agonist, in children with recurrent ependymomas (NCT01795313).
  • A pilot study testing a tumor vaccine that targets the brain tumor initiating cell (BTIC) line given along with imiquimod, a Toll-like receptor 7/8 agonist, in adult patients with grade II gliomas (NCT01678352).
  • A pilot study testing a dendritic cell vaccine in patients with newly diagnosed glioblastoma (NCT01957956).

Checkpoint Inhibitors

A promising avenue of clinical research in brain cancer is the use of immune checkpoint inhibitors. These treatments work by targeting molecules that serve as checks and balances on immune responses. By blocking these inhibitory molecules, these treatments are designed to unleash or enhance pre-existing anti-cancer immune responses. The following trials are currently recruiting patients with brain cancer:
  • A phase III trial testing Opdivo® (nivolumab) and Yervoy® (ipilimumab)—anti-PD-1 and anti-CTLA-4 antibodies, respectively—in patients with recurrent glioblastoma (NCT02017717).
  • A phase II trial testing MEDI4736 (durvalumab), an anti-PD-L1 antibody, in patients with glioblastoma (NCT02336165). This trial is sponsored by Ludwig Cancer Research in partnership with the Cancer Research Institute.
  • A phase II trial testing Keytruda® (pembrolizumab), an anti-PD-1 antibody, with or without Avastin® (bevacizumab), in patients with recurrent glioblastoma multiforme (NCT02337491).

Oncolytic Virus Therapies

Oncolytic virus therapy uses a modified virus that can cause tumor cells to self-destruct and generate a greater immune response against the cancer.
  • A phase I trial testing DNX-2401 in patients with recurrent glioblastoma or gliosarcoma (NCT02197169).
  • A phase I trial testing a measles virus that produces carcinoembryonic antigen (CEA) in patients with recurrent glioblastoma multiforme (NCT00390299).
  • A phase I trial testing Toca 511 (vocimagene amiretrorepvec), a retroviral replicating vector that expresses the cytosine deaminase gene, in adult patients undergoing surgery for grade III or IV gliomas (NCT01985256).
  • A phase I trial testing the herpes simplex virus HSV-1716 in pediatric patients with refractory or recurrent high grade gliomas that can be removed with surgery (NCT02031965).
  • A phase I trial testing a genetically engineered poliovirus for adult patients with recurrent glioblastoma multiforme (NCT01491893).

Adoptive Cell Therapy

In this approach, immune cells are removed from a patient, genetically modified or treated with chemicals to enhance their activity, and then re-introduced into the patient with the goal of improving the immune system’s anti-cancer response. Clinical trials include:
  • A phase I/II trial testing anti-EGFRvIII chimeric antigen receptor (CAR) T cells in patients with malignant glioma (NCT01454596).
  • A phase I trial testing anti-EGFRvIII chimeric antigen receptor (CAR) T cells in patients with glioblastoma (NCT02209376).

Adjuvant Immunotherapies

Adjuvants are substances that boost the immune response. They can be used alone or combined with other immunotherapies.
  • A phase II trial testing Poly-ICLC (Hiltonol®), a Toll-like receptor 3 agonist, in patients with recurrent pediatric grade I or II astrocytoma (NCT01188096).
  • A phase I/II trial testing indoximod, an IDO inhibitor, in patients with recurrent glioma (NCT02052648).

Monoclonal Antibodies

Monoclonal antibodies are molecules, generated in the lab, that target specific antigens on tumors.
  • A phase I/II trial testing TRC105, an anti-endoglin antibody, in patients with recurrent glioblastoma multiforme (NCT01648348).
  • A phase I trial testing ABT-414, an antibody-drug conjugate (ADC) that targets EGFR/EGFRvIII, in patients with newly diagnosed glioblastoma (NCT01800695).
- See more at: http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/brain-cancer#sthash.mRGThaU7.dpuf

Phosphoethanolamine / Calcium EAP and Magnesium EAP

Phosphoethanolamine is a big thing on Brazil right now... since they found a way to make it very cheaply on a lab.  Distribution has been forbiden, since it hasn´t passed all the necessary human tests yet.  So, people are importing Calcium EAP and Magnesium EAP from the States, which are supposed to have a high concentration of the substance. People with all kind of cancer seem to be benefiting from phosphoethanolamine.

Has anyone used them on their treatment?


Monday, 7 December 2015

Sunday, 6 December 2015

Non-TMZ related Cocktails?

Approaching the end of my 6 weeks of radiation/TMZ for Class 4 GBM.

The only cocktails I know of that aren't for enhancing TMZ are:

  • the synergistic use of Sildenafil (Viagra) and Celebrex
  • Curcumin/Turmeric
  • Resveratrol/Pterostilbene
  • Fish Oil
  • Milk Thistle
  • Green Tea Extract
Any others that I should be using during the 4 weeks before Chemo starts?

Friday, 4 December 2015

Immune system

What are you all doing/not doing to strengthen the immune system during chemo rounds and in general? I'm trying to increase my mom's WBC counts.

There might be an obvious answer to this question, but do most GBM patients have weak immune systems? My mom's WBC's are borderline low (at a break point now so not on any chemo)

Thanks everyone!


Just saw a post from Anders Ferry where he mentioned it. I think this could be a interesting component to add:


Does anyone has access to the full article? Maybe you Stephen?


To sum things up....when do we start

Gb4- 53yo.(mom) Just finisher her radiaton chemo

When do we start?  Were slowly adding all the drugs to the list  So far we have ( which in Canada is HARD to get)

With the easy ones..

Metformin ( Ben on it for a while )
Keppra. ( off and on due to " I don't like taking prescription pills)

Chloroquine ( I'm currently in EU my paypal isn'tworking but I'll figure it out in a couple of days... If you want it ordered let me know)



......when do we start...??  Wait till 5/23? Or ASAP?

... As soon as we get all of them or work with what we have got ? And slowly add them in ?

They just saw our oncologist other then dr (TH.... If your in the BC area).. And waiting to get the EGFR results scanned over.... Apparently it's quite a few pages..

Thank You

Thursday, 3 December 2015


Have most people here added chloroquine to their cocktails (if you can access it?)
And have any of your NO's said anything negative about it?

I'm just unsure about it's efficacy and safety as my mom's tumor is p53 mutant.


Quick question. Which one should I order - Chloroquine phosphate

Thank you for this blog Stephen...  You are not just saving lives but helping family members know that help is out.. Here...

Could I get a quick answer as to which Chloroquine phosphate do you order off the uk website?

Mifepristone during radiation


Photodynamic therapy

Does anyone know about or have any experience with photodynamic therapy for GBM? My husband is not getting surgery, but he could have photosensitizing agent intravenously injected and then lit by laser.

Progesterone TMZ synergy

Progesterone TMZ synergy

Lidamycin TMZ synergy


Alfacalcidol D3

As part of his cocktail my husband has been taking 1mg of Alafacalcidol (vitamin D3) for almost two months now. Now I am not sure if this is the right dosage? It comes in capsules of 0.25mcg.

Wednesday, 2 December 2015

Canadian Pharmacies accepting US prescriptions?

Does anyone know of a Canadian pharmacy that accepts US prescriptions?  Our Dr. suggested filling the Viagra script in Canada, as it's $1 a pill.  It's currently $60 per pill in the US.  We're in Seattle so BC is an easy trek, though I believe some can accept prescriptions via fax and mail to our home.  Any suggestions before I call around?


Tuesday, 1 December 2015

verapamil and TMZ

. IF I was to take verapamil with temodal do I need to start the verapamil a few days before starting temodal also if that is correct and once that is established can I take both drugs at the same time? Would it effect the absorption of temodal? I wanted to take them so they are both in the system at peak plasma times. From what I've read the  time to peak plasma concentration for temodal is 1 hour, half life 1.8 and Verapamil immediate release is 1 - 2 hours for  and half life is 2.8 to 7.4 hours Verapamil extended release with food is 12hours to peak plasma concentration and without food 7 hours. as per link below.

I have both immediate release and slow release but not sure how Alan will respond so not sure if we'll end up taking the SR or the immediate release. Do you know what the best time frame to maximise  Verapamil's multidrug resistance effect along with Temodal for both slow release and immediate release would be.

What with all the oxygen,ozone and oxygenated water.

Here is some article about extra oxygen.

Sunday, 29 November 2015


Does anyone have information on butyrate and cancer?  Specifically gliomas?  I have not added this to the artemether I have given Jeremy, but professor Singh strongly recommends butyrate be taken with artemisinin and its analogs.

Valcyte and chemo

I have a question for those who took a chance and tried Valcyte for the cmv virus.  Did toy start during chemo? What were your symptoms ?

Saturday, 28 November 2015

Some pharmacy with Disulfiram

I saw on another site that people buy Disulfiram in this pharmacy supposedly without prescription. I don't know if it is a good pharmacy or not.

Friday, 27 November 2015

Longvida study

Here's a new human study with Longvida curcumin (400 mg daily of the formula amounting to ~ 80 mg curcumin content) showing improvements in mood and memory. I've already uploaded to the Library (Quality of Life folder).


This was a randomized, double-blind, placebo-controlled trial, which was nominated for a University Research of the Year award.

Antipsychotics for glioblastoma?


Scutellaria in vivo


Thursday, 26 November 2015

Moringa oleifera some tree

Moringa oleifera some tree but I'm not sure if would be of any help for brain tumors.

How about sea cucumber

Some article about sea cucumber

How about Modified Citrus Pectin

How about Modified Citrus Pectin. Would it get to the brain?

Wednesday, 25 November 2015

Tamoxifen + TMZ + Avastin

i am taking a metronomic dose of TMZ (80 mg per day) and get Avastin every two weeks.
I have recently added Tamoxifen (currently 20 mg bid, will be increasing to 30 bid tomorrow)
Is it ok to take those three together?
Thank you

Monday, 23 November 2015

MRI results... we have shrinkage (!)

Hi - !
Today marks 3 weeks post chemo/radiation and our first post treatment MRI.  The tumor perimeter was visibly smaller.  The NO took a measure of the 9/17 MRI which was 49 (mm? cm?) and then took a measure of today which was 40 of the same measurement.  He also commented that the tumor center looked like it was dying.  I'm not sure how he could tell but my mom is an RN and said she could tell too.  The NO believes this all to be the work of the Avastin - which we have had 2 doses of to date.  When I asked if the Temodar or radiation were also helping he said that it was clear to him that this was the work of Avastin.  I still don't fully understand why he concluded that other than experience.  So now he wants us to stop Temodar (or rather not re-start Temodar) and just keep the Avastin.  Is this wise?  I feel really uneasy about that.  The reason being - Dad is feeling crappy and the NO believes the Temodar exacerbates his symptoms through extreme fatigue, poor appetite, body pain (Dad is in a wheel chair or seated all day - body cramps up).  That's really it.  I thought Dad tolerated the Temodar fairly well (no nausea).  What do you guys think?  Should we stop Temodar?  Dad will keep taking it if it is indeed helping.

Thanks -

Sunday, 22 November 2015

Metformin and autophagy


I was doing a bit of information gathering on AMPK activators, of which metformin is one, and came across information that  metformin is an mTOR inhibitor and and autophagy inducer.  The autophagy inducer information I found interesting.  Any idea how potent this action is and whether it mitigates autophagy inhibition by chloroquine?

Saturday, 21 November 2015

Melatonin in UK without prescription

It is easy to get melatonin without prescription in US but this is so funny in UK they can't sell it as melatonin so they sell it as "natural hormon" ...so funny . I like that pharmacy

Friday, 20 November 2015

Which mutations to test for?

Hello guys!

I have surgery of my low grade glioma scheduled in less than 2 weeks, but the neurosurgeon told me they don't test for many mutations/markers unless I specifically ask them to.

At the moment I know of:

-MGMT methylation

Is there any other mutation/marker I should ask them to test?

Your help is greatly appreciated,

Thursday, 19 November 2015

Fistula post Surgery

Hi, anyone faced a fistula after surgery? Almost one month after her surgery, she started to drain some CSL for a tiny hole in the scar. We were really scared, but NS then explained us that is something that often happen, but is manageable. She is taken now acetazolamide lo decrease CSF production, glue for skin, sticky strips and pressure bandage.

Synthoms she had:

  • Fever.
  • Headache when moving.

Thanks for your comments.

Metronomic TMZ

Hi, just posting this in order to know if someone else is on Metronomic TMZ too. My wife has started 2 weeks ago with this protocol (50mg/m2) also concurrent with Avastin 15 mg/Kg/21d. Since the first infusion she got improvements on her left side, she has to deal with some level of hemiparesia after surgery on Oct-19

Would like to know if someone else is experiencing fatigue, tiredness or lack energy  due to the accumulation of TMZ in this schedule, or maybe the window between Avastin's infusions is too big (21d) and she is not able to keep a stable level in blood and the effect goes off after 10/14 days.


Wednesday, 18 November 2015

Bladder infection while on the cocktail

My brother has a bladder infection and the doctor is recommending cephalosporine before the next round of chemo. Should we stop all the cocktail drugs to take that drug. Anybody knows if there would be any interactions with all the drugs? And some of them stay in the system long.

2015 abstracts from Society for Neuro-Oncology conference

The 2015 abstracts have been published.  I will use this post to summarize the most interesting abstracts, and will continue updating it as I read through them.


 "GBM spheroids were implanted orthotopically in nude rats...

 Our results show that CBD treatment down-regulates HIF 1 alpha under hypoxic conditions in vitro and in vivo. Combination treatment with CBD and bevacizumab decreases tumor growth and intratumoral hypoxia in clinically relevant human GBM xenograft models."

CBD of course refers to cannabidiol, derived from the cannabis plant.  Bevacizumab is the generic name for Avastin.


"We also have compared the therapeutic efficacies of mebendazole and vincristine against GL261 orthotopic [mouse glioma] tumors at their respective maximum tolerated doses (respectively 100 mg/kg/day and 1 mg/kg/week). We found that mebendazole showed a 61% increase in animal survival time, whereas vincristine failed to show any efficacy.However,we did observe significant neuropathy (as measured by sensory allodynia) induced by mebendazole treatment, similar to that caused by vincristine."


"In vivo, duloxetine inhibited S100B production, altered polarization and trafficking of macrophages and abrogated the growth of intracranial GL261 gliomas." 


"HGGs (N = 35) had markedly higher aromatase expression (>50%) relative to LGGs (N = 19). It is important to note that all the GBMs (N = 21) showed high CYP19A1 [aromatase] expression, whereas the normal tissues and meningiomas had negligible expression. Secondly, letrozole, a widely used aromatase inhibitor in the treatment of ER+ breast tumors in post-menopausal women exhibited excellent brain and brain tumoral penetration and anti-tumor efficacy (assessed using mPET/CT) in rats orthotopically implanted C6 malignant glioma cells. Furthermore, glioma-bearing rats (N =10) treated with letrozole (4 mg/Kg;i.p.injections) had long term suppression with overall survival exceeding 65 days and no signs of overt toxicity. In contrast, control untreated rats (N = 6, 2ml/kg vehicle i.p. injections) developed significant morbidity/mortality in 15-20 days. Overall, our studies strongly suggest that aromatase is a new “druggable target” for treatment of HGGs and that letrozole can potentially be readily used for this purpose."

Why does Avastin disqualify from many clinical trials?

I feel like I knew the reason at one point in time but it seems to have been removed from my brain. We held out on Avastin as long as we could but now that my mom has started (1st infustion 11/3/15 2nd infusion 11/17/15) I'm curious why this will exclude her from many clinical trials.

Avastin use would have eliminated her from participating in the Toca 511 Trial (virus injected directly into tumor cavity after tumor was removed) she was/is part of at UCLA in May 2015. However, her recurrence by November 2015 with multiple new lesions made turning to Avastin pretty much a no-brainer as options are running out.

There are a number of trials that are ok with prior or current Avastin use but many of the ones that sound promising require no prior Avastin use. Why is this?

Avastin inhibits growth of the blood vessels that feed tumors. Is it thought that the medicine (chemo, virus, immunotherapy) can now no longer reach the cancer?

Tuesday, 17 November 2015

Cocktail + lomustine&TMZ

Hi everyone,

My mom was recently diagnosed with GBM so I'm trying to catch on the latest and greatest treatments I can get to her. According to the pathologist, her tumor was MGMT methylated.

She's in her last two weeks of radiation now and her meds are
- Temodar
- Chloroquine 250mg/day
- Longvida curcumin (just started that, she was taking regular turmeric capsules until this order came in)
- Boswellia (maybe one capsule a day, not much)
- Vitamin D 2000 iu/day
- Melatonin 10mg HS

As she comes to the end of radiation, I'm discovering that she might not qualify for some of the vaccine trials going on right now so I'm wondering if any of you know much about the trial that combined Lomustine & TMZ and if you have any feedback on that or other combinations for newly diagnosed GBM that she can inquire about.


I'd also appreciate any ideas you have for her and any meds that would be helpful to add to her cocktail.

Thanks so much for reading.



I didn't see a topic about artemisin yet, so I am opening one.

On the following link is a journal regarding antitumor acitivty or artemisin:

It is fairly long, I will just copy paste some parts:

"Artemisinin and its analogs are naturally occurring antimalarials which have shown potent anticancer activity. In primary cancer cultures and cell lines, their antitumor actions were by inhibiting cancer proliferation, metastasis, and angiogenesis. In xenograft models, exposure to artemisinins substantially reduces tumor volume and progression.

One major obstacle for a successful anticancer therapy is the development of resistance over time. Many aggressive tumors become refractory to anticancer therapy with hardly any chemotherapeutic alternatives. A leading cause of drug resistance is the drug efflux generated by overexpression of membrane protein pumps, which results in ineffective low drug concentrations [108]. Anticancer activity of artemisinins has shown to be unaffected in otherwise resistant and multiresistant cancer cells"

I came across artemisin when friend's grandfather got me a tea from artemisia annua ( https://en.wikipedia.org/wiki/Artemisia_annua ), he also said I should take iron supplement when I drink it - folk's medicine like Stephen calls it :)

"In most of the systems, preloading of cancer cells with iron or iron-saturated holotransferrin (diferric transferrin) triggers artemisinin cytotoxicity [32–35] with an increase in artemisinin activity up to 100-fold in some cell lines [36].

Continued proliferation and growth of malignant cells require higher iron metabolism to achieve processes of cell survival [35].  Therefore, cancer cells exhibit an increase in transferrin receptors (TfR) which are responsible for the iron uptake and regulation of intracellular concentrations. Levels of expression of TfR in cancer cells may vary depending on the cell line. However, they differ substantially from normal cells leading to a high selectivity index of artemisinin and its derivatives. Efferth et al. reported that leukemia (CCRF-CEM) and astrocytoma (U373) cells express TfR in 95% and 43% of the cell population, whereas normal monocytes only account for approximately 1% [42, 43]. "

Does anyone have any experience or knowledge on artemisin?

Monday, 16 November 2015

Lomustine, Carboplatin, Irinotecin... which would you pick?

All -

Dad's oncologist believes that given his decline while on Temodar we should try another option for our next round of chemo in a few weeks.  She said that the choices are Lomustine, Carboplatin, and Irinotecin.  Dad is also taking Avastin (started last week).  Our full cocktail is posted to this blog.

If you had the option to 'pick', which would you push for?  We don't have any genetic testing.  Dad's tumor had a biopsy but no surgical resection.  I've been trying to obtain his MGMT methylation status but it has been nearly impossible to request the test.  Lots of back and forth with nothing.

I'm now beginning to research these three options but want your opinions as well.

Thanks as always..

Sunday, 15 November 2015

Low Grade and Stable

I've asked this in multiple places and struggled with this for a while. So forgive me if you've seen and already replied either on the CC board or brain trust email.  I have oligodendroglioma with 1p/19q deletions, IDH1 mutation, CIC mutation, and TP53 mutation (this one is a mystery). I have residual tumor from 2010 surgery. Did radiation and Temodar in 2011 with no visual reduction. I've been stable for 5 years. Over that time I've experimented with Zinc, Curcumin, PSK, Cimitadine, D3, Metformin, low sugar diet, Melatonin, green tea extract, etc. I know many of these are benign, but I'm feeling like cutting back. First, this is a little pricey to do long term when unsure of benefit. Second, though I like to be proactive, I kind of just want to simplify and stop looking for whatever I can do and just enjoy being stable. Third, when/if recurrence happens I don't want to minimize the benefits of some of these because I took them all this time. As far as other meds, I'm taking Lamictal and Vimpat for my auras. Just looking for any feedback.

Saturday, 14 November 2015

Drug could limit spread of deadly brain tumors

Study shows PPF could help treat glioblastomas by sensitizing tumors to chemotherapy, radiation treatments

November 13, 2015
The Translational Genomics Research Institute
In a significant breakthrough, researchers have identified a drug, propentofylline or PPF, that could help treat patients with deadly brain cancer. They report that PPF works to limit the spread of glioblastoma multiforme, or GBM -- the most common primary tumor of the brain and central nervous system -- by targeting a protein called TROY.

Not sure if any one else already posted. Believe it says it's already been FDA approved. So, may be something to consider adding to a cocktail? Thoughts? 
  1. Hope I posted this right as first time trying. :-)

Wednesday, 11 November 2015

We just made MRi, waiting the result

Hi , I am Melinda , Corneliu's wife, He it feels fine already 1 year, We hope the result of the MRI will look exactly like it feels so well. :) Melinda.

DC/NDV + TTF + maintenance TMZ....thoughts?

Hi all,

I'm 54 from Scotland, diagnosed in August with over 90% resection and am on my last stretch of radio/chemo before starting TMZ 5/28 for 6 months in December.

I'm currently in the position of deciding if i should start TTF therapy alongside maintenance, undergo DC&NDV vaccine at IOZK with maintenance, or embark on all three at once?

Any thoughts would be very much appreciated as i hear evidence for both  TTF and DC treatments working well with TMZ, i just don't know if it would be wise to combine them all. If that is the case, which would be more 'worth' it? If TTF doesn't work well with dexamethasone due to its immunosuppressive effects would it be better to support the immune system with the DC vax first?

Thank you for any thoughts on this matter, i aim to join you all and get my cocktail up soon!


Does tamoxifen cause urine incontinence?

Hi everyone this is Sarah wife of Ahmad
We r good still on the cocktail posted earlier..next scan in December.

He is currently suffering from urinary incontinence ..we r suspecting high dose tamoxifen for this..Stephen, and everyone do u have any information??

Monday, 9 November 2015

Stomach acid and cancer.

Just finished watching some video. The doctor was kind of selling supplements but also gave lots of information which  I think might be truth. I will attach the video tomorrow.
So he says that the cause of cancer is oncogenes and cancer suppressor genes being turned off. Stomach acid (Chydrochloric acid) is a source of methyl groups which we need to have to avoid those bad oncogenes being turned on. So what we need is acidic stomach and alkaline body. So according to him some people get worse on gersons diet full of veggies because they already have not enough of that acid and such diet would further decrease the stomach acid production and would make the cancer they have worse because there will not be enough methyl groups. So he says to really know what diet would work for each patient we need to do some testing to determine stomach acid level and body ph. I am wondering how all this fits together with all of us taking PPI's which will shut down stomach acid production.(I just swallowed some omeprazole for my gastritis)

Portable ultrasounds to open the BBB?

So the news today was about ultrasound opening the BBB. There are some portable ultrasounds for $100. Any thoughts?

Micronutrient mix ?

Here are 2 studies on micronutrient mixtures and glioma.

Inhibition of Glioma Cell Line A-172 MMP Activity and Cell Invasion In Vitro by a Nutrient Mixture
M.W. Roomi, V. Ivanov, T. Kalinovsky, A. Niedzwiecki, M. Rath
Medical Oncology 2007, 24(2): 231-238
Standard multimodality therapy of gliomas is associated with poor patient survival and significant toxicity. Abnormal expression of matrix metalloproteinases (MMPS) is associated with tumor growth and invasion. We investigated the effect of a combination of natural compounds (NM), primarily composed of lysine, proline, ascorbic acid and green tea extract in vitro on glioma cell line A-172, by measuring MMP secretion, invasion through Matrigel, and cell proliferation. Glioma cells A-172 (ATCC) were grown in modified Dulbecco�s Eagle medium with10% fetal bovine serum and antibiotics and treated with NM at 0, 10, 50, 100, 500 and 1000 �g/ml concentration in triplicate at each dose. Cell proliferation was assayed by MTT, MMP secretion by zymography, invasion through Matrigel, and morphology by H&E staining. Zymography showed one band corresponding to MMP-2, which was inhibited by NM in a dose dependent fashion, with virtual total inhibition at 500-�g/ml concentration. Invasion through Matrigel was completely inhibited at 1000 �g/ml NM. NM was not toxic to glioma cell line A-172 at lower concentrations and exhibited toxicity of 50 % over the control at 1000 �g/ml. These results are significant as the nutrient mixture significantly inhibited MMP secretion and invasion-important parameters for cancer prevention without toxic effects, suggesting NM as a potential therapeutic agent for treatment of glioma.

perillyl alcohol

does anyone know Where can I get this in Europe or a international website?

Palliative radiation treatment questions and our story

Everything started Aug 20, 2014.  My son has had 3 stable MRIs after two recurrences, two craniotomies, one gamma knife surgery, started using Optune in April 2015 (not as faithfully later on because of quite bad lesions and burns), irinotecan chemo, and avastin every two weeks infusion since March until about Sept 4 when he had to stop chemo because he was going to have to have the Oomaya Shunt surgery -- so he was off chemo a total of about 7+ weeks and then had a new MRI before starting chemo again.  He also had to be out of PT/OT to rest up after the shunt surgery so he became weaker (he is paralyzed on left side of body since his 2nd craniotomy).  So the new MRI showed extreme progression -- new tumor in the other hemisphere - too large for gamma Knife -- also disease attached to the ventricles.  Now it is a matter of time until the inevitable the NO says when asked. He said he is sorry that he had to be off chemo for the shunt -- this is exactly why I initially said no to the shunt process.  I think the NO wasn't quite fully up front with us about this.  He wanted to aspirate spinal fluid through this method rather than spinal taps because spinal taps can lead to infection -- well here we are with full blown new tumor!  I can't say I am happy with our NO right now and have always been in the past.  If feels like he was experimenting with Michael because Michael was/is his worse case of GBM.  Experimenting without stating the facts to us.  I previously told him I knew the GBM would grow even doubling in size every two weeks with no chemo.  I told him also that I had read that Avastin when stopped can cause terrible migration of new tumor and was told not so.

The tumor board recommends 10 doses of radiation at a higher dose than when doing the standard 30 which he had a year ago.

He is unmethylated, has the Tp53 mutation, has the TERT mutation,  and some other mutation (not very good prognosis from the start.  They did not do genetic testing at all until just about the time progression appeared on the first MRI after radiation and temador were completed.  I had to stomp my feet and scream (not literally) to get the testing done.  I had to argue with the NO that temador doesn't work well for unmethylated.  Of course the Gold Standard had to fail before non traditional agents could be tried.

So now we are down to starting radiation again that can certainly do more harm than good but also that could also do more good than harm I'm told.  This is to prolong the inevitable the NO said.  I would just like to know what I should absolutely be sure Michael is taking to help the radiation to do the most good.

Michael is experiencing significant mental confusion, disorientation to time and space, short term memory just not working -- all of this got really bad since last Tuesday when he had the topotecan for the first time through the Oomaya shunt.  But he had been experiencing forgetfulness.   For example: not remembering what city the NO is in and his own street address and such.  But now it's really extreme.  I had tried giving him DCA before the bad memory problems for only a total of about 8 days and because of confusion I felt I could not risk giving it to him.  Though at this time I'd really like to give him the highest safe dose but am afraid to.  I did not give DCA 8 days consecutively but rather 3 days and stopped and then 2 days and 2 days and finally decided it was too risky.

The last craniotomy that caused severe left side paralysis also caused blindness in the left visual fields of both eyes.  But now his vision is getting blurry and he has been on chloroquine and accutane so am stopping those now just in case they are contributing to the blurry vision.  He has a neuro oncologist who says his eyes are not affected by the chloroquine etc.  But he doesn't seem really knowledgeable about these drugs. Since starting this post I received a note from Rich stating Chloroquine and Valproic acid should be used during radiation.

So bottom line is tell me what is important to make the radiation as effective as possible.

Thank you all.