Tuesday, 31 May 2016

Vaccines and Immunotherapy - German Clinics

Stephen, Linda, Annie, David and all on this blogsite -
we would like to start planning ahead for possible vaccines treatment. I have read through the information Stephen has shared on the four German clinics. Also heard about Linda working through a local clinic in Australia to avail of the same. Two quick questions:
1.  Is there a way to avail of the vaccines treatment in USA from these German clinics? Meaning is it possible to administer the injections after importing the vaccines that they prepare there? My mom can not travel in near future and therefore we are looking for options to get vaccines in USA. Has anyone arranged for it before in US?
2.  I have ordered gene testing of her tumor and detailed report on 500 genes should arrive in about 2-3 weeks. Can you please point to additional research to determine right vaccine/clinic selection.


new IRM coming

Hello all.,

I am waiting the new IRM for Corneliu, he is programmed in 7 JUNE , and i will keep you all, posted.

My husband is retired from work ..medical reason, in other country they do the same? retirement  totaly ? i am just curious .


Sunday, 29 May 2016

Dad's Cocktail - maintenance edits. Depakote, Metformin - continue daily?

All -

Dad seems to be about the same, maybe slightly more agitated, since my last post regarding growth.  I'm trying to score some Nivolumab.  If successful I will let you all know.  For now we are sticking with Avastin every 2 weeks + added in Temodar on the 5x day on cycle, as we never did that protocol just the initial dose during radiation last Sept/October.

Now that we're 6+ months post radiation, should I drop the Depakote?  We are new to Temodar 'maintenance mode'.  If I recall my notes, here's my thought on specific meds around Temodar:

7 days Pre-Temodar:

During Temodar:

Plaquenil (it's all we have - I know phosphate is preferred)

If I go this route, we would be reducing the daily Depakote and Metformin - as Dad has taken both constantly since we started late August.  Any need to taper either of these?  Did anyone experience issues when dropping Depakote?

This is only the RX stuff.  I can post my whole cocktail if useful - just condensing for now. 

Thanks all.

Friday, 27 May 2016

Vadym and Tania. Please, help start correctly!

Hello everybody!
Thank you, Stephen, for having added me-)
My name is Tanya, I'm from Ukraine, Kiev. My husband Vadim, 46 years old, has been operated glioblastoma and 28 March 2016. Now he  gets radiotherapy and temozolomide.
Please, help us in the development of a strategy for the further treatment of Vadym.
We have the results of histology and immunohistochemistry:
this is a very cellular glial neoplasm consisting of pleomorphic, atypical gemistocytic astrocytes which diffusely infiltrate the cerebral cortex and subcortical white matter, forming secondary structures of Scherer. Mitotic figures, including atypical forms, are readily recognized, as well as prevascular lymphocytic infiltrates and foci of microvascular proliferation. In addition, there are large areas of confluent necrosis with early organisation and some trombotic blood vessels.
ki-67 ( sp6)- positive tumor expression to 15 %
Bcl-2a Ab-1 (Clone 100/D5)- tumor expression weakly positive,
p53 ( clone Sp5) positive expression to 5 %/
And another part of brain (left temple)/
ki-67- positive expression to 5 %
CD 45/T200/LCA Ab-2 ( clone PD7/26/16 +2B11)- positive expression in abscess,
GFAP glial fibrillary Acidic Protein Ab-6(GFAP) positive expression.

Conclusion :
Pleomorfhic glioblastoma ( ki-67- to 15 %) with a plot of abscecc.
Our protocol:
radiation and TMZ 180 mg 1х per day.
1. Metformin 2,5 mg per day (1+0,5+1)
2.Chlorochine 250 mg х 1 per day,
3. Levetiracetam 1g х 2 per day ( he has no seasures),
4. Dexametaxone 2 mg ( we are going to replace it for boswellia)
1 Boswellia serrata 6 caps. per day ( 1500 mg) http://ua.iherb.com/Himalaya-Herbal-Healthcare-Boswellia-60-Veggie-Caps/3689
2. Boswellia serrata 6 caps. per day ( 600 mg) http://ua.iherb.com/Life-Extension-5-Lox-Inhibitor-with-ApresFlex-100-mg-60-Veggie-Caps/40487
3. Curcumin 2400 mg per day http://www.ourkidsasd.com/products/2510%7CEnhansa%20(enhanced%20absorption%20curcumin)-Lee%20Silsby
4. Milk Thistle 150 mg х 3 times per day http://ua.iherb.com/Jarrow-Formulas-Milk-Thistle-150-mg-200-Capsules/127
5.Maitake 3 pills х 2 times per day ( Maitake body powder 3600 mg, Maitake Fruiting Body Extract PD- Fraction 1440 mg ) http://ua.iherb.com/Grifron-Maitake-Mushroom-Wisdom-Maitake-D-Fraction-Pro-4X-120-Veggie-Tabs/17000
6. EGCg 3 capsules x 2 time per day ( 2400 mg) http://ua.iherb.com/Now-Foods-EGCg-Green-Tea-Extract-400-mg-180-Veggie-Caps/11598
7. Iron 1 capsule 25 mg per day http://ua.iherb.com/Solgar-Gentle-Iron-25-mg-180-Veggie-Caps/10625
8. DHA 500 mg per day ( we are going to increase).

My most important question is, what can i add to protocol during radiotherapy?
Are the supplements, my husband takes, permissible with radiotherapy?

I would be wery gratefull for any your comments!
I wish you all good health! Thank you and especially to Stephen!
PS. Excuse me, please, for my english....it is wooden.

Tuesday, 24 May 2016

Aunt Zelda's CBD & THC

We have helped a few of you and have been helped in return. Thank you. I apologize for a repeat posting however:

I found more Aunt Zelda's CBD oil (10g unopened and 8g opened) & THC (unopened 5g). Please contact me if interested.

 In addition we still freely offer to anyone in need:

  • Dexamethosone (barely used)
  • Atovaquone -PCP Pneumonia prevention while on chemo (unopened)
  • Ondansatron (Both opened and unopened)
  • Keppra (Opened & unopened)
  • Eliquis- Blood thinner (unopened & opened)
  • Midazolam (Unopened & unused) (emergency seizure control- What the ER uses)
  • Hospice medicines (Unopened end-of life comfort care meds)
  • Balsalazide Disodium- used for ulcertive colitis (Both opened and unopened)
  • Carnivora extract (barely used)
  • Ellagic Acid
  • Frankincense Extract
  • Ruta 6C & Calc phos homeopathic (open & unopened)
  • A variety of of Urinary tract supplements....

Costly items we would much appreciate some reimbursement if you can offer it:
  • Helixor Helleborus Niger D12 (4 unopened packs from Europe $75 each) (for inflammation)
  • Helixor Misteltoe Viscosan A 1, 5, 10 strengths ($150 worth)

Needs a good home:
  • Soft Foam helmet- saved my mother so many times when she became prone to falls

Best wishes to you and your family,



Avastin works better with unmethylated tumours phase 2 study


Monday, 23 May 2016

Rindopepimut / Rintega availability

As we know, the very hopeful looking drug Rintega didn't quite make it to Phase IV but to get to that point it obiously had some pretty good success up to that point and even tremendous success with some patients (http://bit.ly/1rXxLnV).  So I checked with maker Celldex to see if it was still available and got this response back --"Ongoing access to rindopepimut has been offered to existing compassionate use recipients, as well as all patients on the rindopepimut arm of the ACT IV study and prior Phase 2 studies. There is a compassionate use program for patients with recurrent glioblastoma based on data previously presented from the Phase 2 ReACT study."

So I'm guessing that new GBM patients like my wife won't have access.  If anyone can shed further light on this type of use I'd appreciate it.  I'm personally of the belief that if one person has had great success -- why not us.

Sunday, 22 May 2016

Newly diagnosed. Need help.

Thank you for adding me to the group.

My father (age 61) was just recently diagnosed with GBM grade 4. He had a small tumor in his left temporal lobe and had an awake surgery at UCSF two weeks ago where they were able to remove all of it. He is very healthy and fit and has been recovering so well from the surgery.

His test results came back and he is unmethylated, IDH-1 negative. 

I have read the Ben Williams book, watched the documentary, read everything I can find on the internet. I realize that being unmethylated means the chemo won't work well, if at all. Is there anyone that can help me to create a cocktail treatment plan for him? Is it still worth doing the chemo even when you are unmethylated? 

Also, the only clinical trial available to him at UCSF right now is the nivolumab one. Not sure if that is the right way to go at the point?

Any advice would be greatly appreciated. Thanks so much!

Targeting Invasion - Fluvoxamine



In March of 2016 a Japanese group published research showing that the cheap, off-patent anti-depressant fluvoxamine inhibits GBM migration and invasion both in vitro, and in vivo in an orthotopic mouse model using human glioma-initiating cells [23].
In this study, 18 antidepressants and antipsychotics were screened in vitro for their ability to inhibit actin polymerization in GBM cell lines, a process essential for cell migration and invasion. Of these, the most potent inhibitor was found to be fluvoxamine. Fluvoxamine treatment of three GBM cell lines inhibited cell migration in a dose-dependent manner. In contrast, fluvoxamine had no effect on cell proliferation in the same three cell lines.
In follow-up studies, the brains of nude mice were injected with human glioma-initiating cells. One week later, fluvoxamine treatment of the mice was initiated by daily intraperitoneal injection. The dosage of fluvoxamine used in the mice had no effect on mouse body weight. At four weeks, tumors were isolated and histologically examined. Untreated tumors showed a disorderly invasion into healthy tissue, while tumors from fluvoxamine-treated mice were significantly smaller with invading cells forming island-like shapes that clumped together at the tumor border. CD133 positive cells (a marker of glioma stem-like cells) were found localized to the small tumor area in the fluvoxamine-treated mice, while CD133+ cells had spread out from the main tumor in untreated control mice. Vascular endothelial cells and proliferative Ki-67-positive cells were also greatly reduced in the fluvoxamine-treated tumors. Survival of mice in the fluvoxamine-treated group was extended.

Inline image 1

ellagic acid



Saturday, 21 May 2016

2016 WHO Classification of Tumours

Hello everyone

I just found a link to this on the brainstrust.org.uk site.  You may well know about it already?  I downloaded the full paper.  Most of it was way over my head, however it seems an important step from the WHO in recognising the importance of genetic factors in brain tumour classification and treatment.


The 2016 World Health Organization Classification of Tumors of the Central Nervous System is both a conceptual and practical advance over its 2007 predecessor. For the first time, the WHO classification of CNS tumors uses molecular parameters in addition to histology to define many tumor entities, thus formulating a concept for how CNS tumor diagnoses should be structured in the molecular era. As such, the 2016 CNS WHO presents major restructuring of the diffuse gliomas, medulloblastomas and other embryonal tumors, and incorporates new entities that are defined by both histology and molecular features, including glioblastoma, IDH-wildtype and glioblastoma, IDH-mutant; diffuse midline glioma, H3 K27M–mutant; RELA fusion–positive ependymoma; medulloblastoma, WNT-activated and medulloblastoma, SHH-activated; and embryonal tumour with multilayered rosettes, C19MC-altered. The 2016 edition has added newly recognized neoplasms, and has deleted some entities, variants and patterns that no longer have diagnostic and/or biological relevance. Other notable changes include the addition of brain invasion as a criterion for atypical meningioma and the introduction of a soft tissue-type grading system for the now combined entity of solitary fibrous tumor / hemangiopericytoma—a departure from the manner by which other CNS tumors are graded. Overall, it is hoped that the 2016 CNS WHO will facilitate clinical, experimental and epidemiological studies that will lead to improvements in the lives of patients with brain tumors.


Hi -

Met with the local oncologist yesterday to go over our MRI results.  He assured me they were very bad.  I'll share with you:

There is interval increased surrounding vasogenic edema.  Abnormal increased FLAIR signal is seen extending to the splenium of the corpus callosum.  There is also further craniocaudad extension of the vasogenic edema.

Current measurement of the ring-enhancing lesion:  5.7 x 4.1 x 3.8 cm in AP, transverse and craniocaudal dimensions (previously 4.3 x 4.4 x 3.1 cm) current measurement of the cerebral edema and abnormal T2-weighted signal 7.3 x 5 by approximately 6 cm (previously 4.5 x 5.0 x 3.5 cm).

You guys...  I'm feeling many things.  We've been on an Avastin alone approach (++ cocktail) since October.  When I was at UCLA last month I spoke with Dr. Liao who asked why we stopped the Temodar if the MRI did not show progression?  (It did not - the decision to halt Temodar was made in response to Dad's weakened condition, which in retrospect may have been due to the impact of radiation to the motion strip of his brain).  We may have stopped Temodar prematurely.  So now, 6-7 months later, I asked the local oncologist - can we revisit Temodar?  He said that sounded like a rational approach and sent us off with a script and with our Avastin for the 2 week interval.

The ONLY change made in the past few months was the addition of Valcyte late March.  Could Valcyte cause false growth?  Could Valcyte cause real growth?  Is the timing more likely coincidental given Dad's at the 6-7 month window of Avastin use?

We're not eligible for the Polio trial as Dad can't walk.  What else should I try...?  Has anyone tried Temodar post Avastin failure?

Thank you all.  You are my friends in this and I appreciate you.
xoxo Annie

Metronomic TMZ with adjunct supplements/chemo for recurrence


Has anyone had good results after a recurrence of a high grade glioma using Temodar on a daily low dose in combination with another agent? I'm looking for an approach that might increase it's effect for my wife who had a recurrence (AA3). Her NS has made the suggestion (just the TMZ alone) and I would assume her oncologist will be advising the same. Given that it appears her tumor didn't respond to TMZ in the first place I'm questioning that it will be the same outcome as before. Perhaps CCNU might be the better choice, or combining them if she tolerates it.

FYI on Clinical Trial

In looking at the locations this is offered in some not so common areas i.e. in Conn at Yale --

A Dose Escalation and Cohort Expansion Study of Anti-CD27 (Varlilumab) and Anti-PD-1 (Nivolumab) in Advanced Refractory Solid Tumors


Dose anyone where to buy Celebrex from ?

Hi all
Dose anyone know where to buy Celebrex from online that is reliable source ?
Thank you

Friday, 20 May 2016


Summary on Astrocytomaoptions.com

Prazosin is an old drug, first approved by the FDA in 1976 (brand name Minipress) to treat hypertension, through antagonism of α1 and α2B adrenergic receptors (adrenoceptors). It is off-patent and cheap, costing as little as $10 (US) for 30 1mg capsules.
In the spring of 2016, a French group published research showing that prazosin could inhibit the growth of recently-resected human GBM xenografts injected into the brains of immunodeficient NOD scid gamma (NSG) mice [63].
In vitro, five different α-adrenergic receptor antagonists were tested for effects on glioma-initiating cell viability. Of these, only prazosin showed significant inhibitory effects on cell viability, also inhibiting sphere-forming ability of the cells. Prazosin also negatively impacted survival of differentiated GBM cells, while having little effect on healthy neural stem cells.
Freshly-resected human GBM cells were sorted for the markers CD133 and EGFR, and injected into the brains of immunodeficient NSG mice. Upon the detection of tumor mass, the mice were then treated by intraperitoneal injection with prazosin twice weekly for 45 days. Prazosin treatment significantly reduced tumor size and increased mouse survival in these models, compared to untreated tumor-bearing mice. Prazosin treated mice also showed a reduction in the proportion of CD133+ cells in the tumors (CD133 is a marker of GBM stem-like cells, with high tumor initiating potential). A 10-fold lower dose of prazosin, comparable to a typical anti-hypertension dose, also significantly reduced tumor size and increased mouse survival. Additionally, prazosin treatment similarly reduced tumor volume and increased mouse survival in a syngeneic GL-261 mouse glioma model using immunocompetent mice.
The specific mechanism responsible for these observations was next investigated. The researchers found that prazosin causes glioma cell death by apoptosis, both in vitro and in vivo, but did not induce apoptosis in non-tumor cells in the mice. The lack of effect of other adrenergic receptor blockers (besides prazosin) on GBM cells suggested its effects were independent of α-adrenergic receptor blocking activity. Instead, they found that the effects of prazosin on GBM cell death were dependent on PKC𝛿 (protein kinase C, delta isoform), as silencing of PKC𝛿 protected the GBM cells from the effects of prazosin. Prazosin also significantly inhibited the activation of AKT (also known as protein kinase B), which is a central hub in GBM pathology, at the center of the PI3K/AKT/mTOR proliferative signaling pathway. However, the silencing of PKC𝛿 in the cells reversed these effects on AKT. In mice, PKC𝛿-silenced tumors were unresponsive to prazosin.
In summary, these observations indicate that prazosin, a cheap off-patent hypertension drug, may have clinical use in GBM, especially those with alterations in the PI3K/Akt pathway.

Thursday, 19 May 2016


Hi all dose anyone have any information about volasertib?
I have been researching it recently and it seams promising 

Is Vasculogenesis the reason for Tumor growth after Radiation?

Stephen and all -

What's your experience or opinion on anti-vasculogenesis following chemo and radiation therapy?

Research below is claiming that Radiation kills the angiogenesis mechanism and the tumor grows back not due to angiogenesis but due to vasculogenesis after standard therapy. So HIF-1 and SDF need to be inhibited. Plerixafor is one such treatment. More articles available on Google search.


Tuesday, 17 May 2016


Well, I guess PVSRIPO is relevant to cocktail approach.  What I thought was the most promising in the CBS report is that when they added chemo later to one the treatment had failed on, it actually had a complete response. The immunotherapy made tumor more vulnerable to chemo. I'm surprised they were all surprised by this. This just confirms the future must be a cocktail approach and not a silver bullet.

Grace and Peace,


Dose anyone know of any drugs targeting vegf?

Hi all
My dad had his scan results last Friday.
Over a month ago we was told that the tumor is growing and it spread to the other side of the brain so they took him of Temodar.
However on Friday we got the result and it was quite different. It hasn't grown atall and the blood supply is slowing to the tumor.
I have my dad on a wide range of repurposed drugs and supplements so it would be hard to say what's working.
Dose anyone know of any that would do this ?

Monday, 16 May 2016

Radiation 60% of Brain

My husband was diagnosed May 1, 2015, with GBM, right frontal-lobe and had 60% of his head radiated under the usual protocol of 30 days + chemo. One year out, and though his tumor(s) are stable, his deficits seem to be more pronounced. I was wondering if there is anyone here with similar, right frontal lobe, lots of brain mass radiated, who could tell me what to except one year out with this level of radiation. I know radiation impacts good brain cells, but is it permanent, and is there anything that could be done to rebuild. So far cognitive therapy hasn't worked much.

Medicine give away

Dear Tender Hearts,
As a result of the medicines we gave, my mother lived a longer life with very high quality. She passed peacefully last week and I have many of these useful supplements, herbals and prescriptions that I do not want to waste. Some unopened, some used. The items include:

We were fortunate that insurance coverage paid for most of these. Will offer freely to anyone in need:
Dexamethosone (barely used)
Atovaquone -PCP Pneumonia prevention while on chemo (unopened)
Ondansatron (Both opened and unopened)
Keppra (Opened & unopened)
Eliquis- Blood thinner (unopened & opened)
Midazolam (Unopened & unused) (emergency seizure control- What the ER uses)
Hospice medicines (Unopened end-of life comfort care meds)
Balsalazide Disodium- used for ulcertive colitis (Both opened and unopened)

We paid out-of-pocket for these- if you are having financial hardship and want them, we offer to you:
Vitamin C Ultra potent (barely used)
Carnivora extract (barely used)
Ruta 6C & Calc phos homeopathic (open & unopened)
A variety of of Urinary tract supplements....

Very costly items we would much appreciate some reimbursement if you can offer it:
Helixor Helleborus Niger D12 (4 unopened packs from Europe $75 each) (for inflammation)
Helixor Misteltoe Viscosan A 1, 5, 10 strengths ($175 worth)

Other item I would happily send to a loved one in need:
Soft helmet- saved my mother so many times when she became prone to falls

Please email me: kusumacreates@gmail.com if you would like all or some of these.

So many honest people in a mess of laws and regulations just trying to save lives. If any of these help another person I will be so happy. Life is so precious. Even if our time comes early, I cannot express the value some of these medicines had in supporting my mom to spend her last months in quality- no headaches despite tumor growth, no more seizures, inflammation control, high neurological function, humor, peacefulness and contentment simply fading into sleep.

Wishing you and yours love and good health,

Surgery after Avastin...?

Posting this question for Jaki and Roger.  Have any of you had surgery after being on Avastin?  Any complications?  Bleeding issues?  Curious if this has been done with any degree of success in our group...

Thanks very much.

Friday, 13 May 2016

Polio/Rhino Virus

I know this isn't cocktail related, but CBS is doing a follow-up this Sunday. There is no question, a single therapy that eradicated recurrent GBM is stunning. I'm just wondering how we should view this? I don't believe there is such a thing as false hope. But, is this more media hype or a breakthrough? http://www.cbsnews.com/news/promising-duke-university-polio-brain-cancer-trial-given-breakthrough-status-60-minutes/

Nivolumab/ Opdivo

Hi everyone,
There's quite a bit of talk on the Inspire forum about Nivolumab. There are trials happening & there are also patients accessing it without cost via the drug company.
We are in Australia and so far Nivolumab is only approved for melanoma and I think it costs about $100,000/ year.
Im wondering if your oncologists in USA/ England etc talk about it at all & if they see it as a promising GBM treatment?
Best wishes to all. Lisa

Thursday, 12 May 2016

Cocktail Schedule

Stephen and all -

Please help me schedule this cocktail (morning, afternoon, night) for beneficial synergy between different drugs and better tolerability. My mom goes to radiation everyday at 2 pm. She currently takes Temodar every night with empty stomach at 10 pm. What are your recommendations for when different medicines should be taken to maximize their collective efficacy while you are on radiation?

Temodar (110 mg every day - 7 days a week)
Chloroquine (250 mg)
Disulfiram (250 mg)
Celebrex (200 mg)
Depakote (1000 mg)
Melatonin  (10 mg)
Minocycline (200 mg)
Prozac (20 mg)
THC/CBD  (100mg / 200 mg)

Wednesday, 11 May 2016

Recent comments

Somehow the Recent comments widget on the sidebar has suddenly stopped working. I  removed it and tried another one, which is also not working.  I hope to have this figured out soon and get it functioning again.

Weight loss

Though my husband's tumor is stable, at least as of last month's MRI, he continues to struggle with weight loss. He barely eats 750 calories a day. He's lost over 25 lbs, mostly muscle mass. I know that this is partly from the side-effects of chemo but some of this pre-dates chemo and must be tied directly with the tumor. His tumor is in the right frontal lobe. A neighbor who is an emergency nurse recommended Megestrol Acetate to increase appetite. It has been used for other cancers and HIV/AIDS patients. Does anyone here grapple with the same issue? The other thing that is compounding the problem is Provigil, which he takes to stay awake but is also an appetite suppressant.

Tuesday, 10 May 2016

TMZ 5/28

Hi everyone,
My brother is 20mths on from GBM diagnosis and doing very well. He has been on TMZ 5/28 for over a year. He tolerates it fairly well but for that week he's pretty much out of action. I'm wondering if he went on to the low dose every day would it be as effective on his tumour and also hopefully not make him as tired. Any thoughts?
Thanks, Lisa

Monday, 9 May 2016

Blocking BCAT1 and or Glutamate

Hi all
Wondering if any1 could help me.
My dad's pathology report stats that he has over expressed BCAT1 and is idh1 wild type.
I have been searching trying to find something that may be able to block this aggressive amino acid.
I have only found one paper paper to suggest that a drug may help it is an anti seizer med called gabapentin, has any1 took or used this before ?
BCAT1 is the reason wild type idh1 are more aggressive.
Also I was wondering if anyone knows of any know ways of blocking glutamate? As this is what fuels these things?


Many thanks all

Friday, 6 May 2016

Several scientific papers from MD Anderson about curcumin have been retracted

I know Pub Med has multiple  articles re Curcumin/cancer, but it's never reassuring when you here that the  integrity of scientific papers are questionable.

There are  articles about the effects of curcumin on human tumour cell lines  now in question. Seven papers (5 curcumin related)have been retracted from a single journal.

 Only one note specifies that the correction does not affect the paper’s conclusions.



Please comment: Our first cocktail

Dear Stephen and all,

Thank you for all your advice and comments so far. Here's the cocktail we have almost finalized and would like final comments from you on any contra-indication or obvious misses or mismatched combinations.  Mom is 62 yrs old and has left side body paralyzed and low blood pressure. Her Ferretin and Glucose remain high in Blood Count. Early gene test reveled IDH1 inactive, MGMT methylated and EGFR amplified. More details will be known only a month from now. We plan to introduce this cocktail slowly to her starting this weekend. Her radiation just started.

Temodar (110 mg every day - 7 days a week)
Chloroquine (250 mg)
Disulfiram ((250 mg)
Celebrex (200 mg)
Depakote (1000 mg)
Melatonin  (10 mg)
Minocycline (200 mg)
Steroids (1 mg a day that I want to remove once the doctor agrees)

Hemp Oil
PSK / PSP Mushroom
Fish Oil
Boswellia Serrate
Shark liver Oil
Ruta 6c
Vitamin D3
Green Tea extract
Broccoli Sprouts Extract

In store for possible swaps or future use:  Metformin, Prilosec, Tagamet, Auronafin.  I had to fight many different options to get these all, but have it now for 2 months supply atleast.

I am no expert - learnt from you all. So please comment if I should consider any swaps or missed out anything.

best, JR

Thursday, 5 May 2016

Curcumin recommended dosage?

Can anyone provide some info on what the recommended dosage is and manufacturer/brand you use? Also, feel free to offer any suggestions/tips for usage/side effects etc. Not sure if it's worth noting but my wife started TMZ this week, plus I have yet to bring this up with our NO. Thank you!

Quick question: PSK and PSP pure extract sources

Hi all,
Need your recommendation for best quality PSK and PSP mushroom extract vendors and what/how should I procure it. thx

Wednesday, 4 May 2016

Hyperbaric Oxygen (HBOT) or Ozone therapy

Does anyone have any observations or experience around the use of hyperbaric oxygen therapy or Ozone therapy to aid the radiation and chemo?  There are some online posting we've seen claiming that it helps the radiation and chemo process with tumor cell oxygenation, radio-sensitivity and lessening radiation side effect.


Two questions:
 -  Any pros or cons comments about HBOT or Ozone with Radiation and Chemo?
 -  How does this work with or against anti-oxidants supplements such as curcumin, CoQ10, etc?


Anyone still taking Rintega?

My wife had a subtotal resection of a GBM tumor on 3/29.  She started TMZ and radiation on Monday but I want to take a more proactive approach as opposed the current reactive SOC approach -- with that said - her tumor shows amplification of the EGFR biomarker.  As we know Rintega (Rindopepimut) vaccine had some good success with EGFR patient but didn't make the cut on the PhaseIII trial. But Rintega HAS worked for some in the past - http://bit.ly/1UzcqMS.  My thinking? -- why can't my wife be one of those winners like those who have used Rintega?  So -- my question is - is anyone still taking and have access to this drug?  Thanks.

Antioxidants and CBD - a warning (?)

Hi Everyone!
I don't post here frequently but I'm an active reader. First of all, thank you Stephen and all good people who share their stories and knowledge about battling GBM and other gliomas. The information gathered here is priceless!

A couple of days ago I came across some information that antioxidants appear to reverse the cancer-inhibiting properties of CBD what leads to a conculsion that extensive supplementation with AOX should be significantly reduced or stopped, e.g. curcumin, CoQ10 etc.
Has anyone got any more detailed info on that?

More details on: http://www.beyondthc.com/antioxidants-and-cbd-a-warning/

Monday, 2 May 2016

Chloropyll for low platelets??

My husband's platelets are in the low 60's and treatment is on hold until levels go up. I've read that chlorophyll is good for that. Anyone taking chlorophyll? What is your experience? What brand do you use?

Moon Shot Cocktail Proposal

Wondering if anyone in this community has submitted a proposal for the cocktail approach to the MoonShot initiative? Here is the link for someone who is able to provide the required information. The deadline is July 1.


Grace and Peace,


Sunday, 1 May 2016

Black Seed Oil / Thymoquinone

Stephen et al;

I was wondering if any of you have heard about Black Seed Oil / Thymoquinone as a supplement to use against GBM? My issue with all of these studies is what type of dosage to safely give but also enough to make an impact.

Someone mentioned it in the comments to my blog:

Here's the NCBI cite for the study: "Thymoquinone inhibits autophagy and induces cathepsin-mediated, caspase-independent cell death in glioblastoma cells."