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,
Matjaz


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.
Thanks!!!

CAR T-CELL THERAPY TO FIGHT TUMORS

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

http://www.cityofhope.org/brain-cancer-2016-using-car-t-cell-therapy-to-fight-tumors

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

Auranofin

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

http://www.mdpi.com/2072-6694/5/3/1020/htm


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

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.

Details:
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.

http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/brain-cancer

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.

URGENT NEED

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.

TREATMENT

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.

IMMUNOTHERAPY FOR BRAIN CANCER

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?

Matias.


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!

Pioglitazone

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

http://www.sciencedirect.com/science/article/pii/S0006291X15009742?via%3Dihub

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

Thanks.

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)

Prozak

Viagra

......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

Chloroquine

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.

Thanks!

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

https://www.bruker.com/applications/preclinical-imaging/glioblastoma.html

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
http://www.ncbi.nlm.nih.gov/pubmed/26110872

Lidamycin TMZ synergy

http://link.springer.com/article/10.1007%2Fs11060-014-1477-3

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?

Thanks.
Annie

Tuesday, 1 December 2015

verapamil and TMZ

Stephen,
. 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.
http://www.medsafe.govt.nz/profs/datasheet/v/VerpamilSRtab.pdf

What with all the oxygen,ozone and oxygenated water.

Here is some article about extra oxygen.
http://www.medicaldaily.com/breathing-extra-oxygen-shows-promise-fighting-cancer-and-boosting-immune-system-will-324646