Monday, 31 October 2016

Gamma Delta

Hi Stephen,

Do you have any information about Gamma Delta therapy in GBM? It was recently brought up but am not sure if it was tried before in GBM- can't find anything that says it was. Also, what would be potential side effects? Could it lead to swelling and edema as those seen with PD-1 inhibitors and CTL4 antibodies?


Sunday, 30 October 2016

Memantine and Radiation

Dear all:

This is to let you know that Memantine (Nameda, an anti-Alzheimer drug) can be used to prevent radiation-induced neurocognitive decline to a certain extent. My sister's radiation oncologist recommends it, it is apparently routinely prescribed for children undergoing brain radiation.
Patients usually take it a few days before radiation, during treatment, and for six months post-treatments. My sister's side effects so far have been headache, body ache, tiredness, and nausea.
But it might be worthwhile to ask for it.
Wishing you all the best,

Tuesday, 25 October 2016

Pilkington interview on clomipramine - partial transcript

Thanks to jo jo for the link to the interview.

I've transcribed some of the more interesting quotes from the interview here:

26:37 a rather large number of patients, there have been some sort of reports over the years, and we've been doing this now, work on this drug since the mid-1990s, and hundreds and hundreds of patients with malignant brain tumours have taken clomipramine, albeit as anecdotal cases and indeed at different dose levels. I think it's very difficult to put your hand on your heart and say that this is something that's working across the board because we don't know the circumstances. When patients are diagnosed with malignant brain tumors increasingly they go onto the internet, and they look for things, and they start self-medicating...

29:05 We need to initiate a properly controlled clinical trial and we need to design that trial appropriately.  We're going to be given a clinical trial, if indeed we're given a trial at all, if we do get permission for a clinical trial, the design of it may not give us the answers that are there to be had.  In other words if we have this tagged on at the end as a sort of a "salvage therapy" for patients who've already undergone a series of other therapeutic approaches, we may end up with a patient there whose cells really are just not going to be responsive to this approach. 

29:56 I think the design of the trial as well as the initiation of the trial is very important in this context. There are a number of patients, a large number of patients out there who I'm absolutely certain have done very well. You have to extrapolate to why they've done very well. Those patients happen to correlate with [those] that were taking clomipramine so you can make up your own mind on this.

Toxicity of DCA + artesunate combination in a GBM patient

A new case report describes a toxic and eventually fatal reaction following DCA + injected artesunate in a GBM patient.  Hematological and liver toxicity began 6 days after DCA + artesunate combination treatment.

"An unknown amount of DCA was administered and ART (2.5 mg/kg bodyweight) was intravenously infused 148 days after surgery".

Note that artesunate was removed from the CUSP9 protocol due to toxicities.  Probably best to avoid the DCA + artesunate/artemisinins combination.  Has anyone been taking this combination now or previously?

Monday, 24 October 2016

Avastin Decision - When to Stop?

I have been battling brain swelling for several weeks now, after accidentally hitting my head several times.  The boswellia I took helped somewhat, but not totally, so I reluctantly went on Avastin which has really been a game changer.  My fog has lifted and I am once again steady on my feet.

In reading about Avastin, I can see that it can help with tumor shrinkage as well but when it is no longer effective, the tumor(s) come back with a vengeance.  I have tried to find out the 'why' of this but the closest I have come to an answer is that when if the Avastin efficiently blocks the tumor's angiogenic pathway, the tumor evolves another way to grow, one that is often better and more efficient than before.  Makes sense, which is why we subscribe to the carpet bombing paradigm promoted by Ben Williams.

And, in reading the publications in Stephen's library, I see that Avastin's anti-angiogenic properties can also possibly interfere with chemo/supplements' efficiency.  Lovely...all the more reason to get off of it as soon as possible.

I have had two infusions so far, with only two side effects:  chills at night after the first infusion only, and neuropathy in two of my toes that is still with me.  I want to be on this medicine for the very shortest time necessary, really, only until I reach a full therapeutic dose of my supplements.  I see it as just buying me time, keeping the swelling down until then.

But at what point do I stop taking it?  There's the rub.  If most of the terrible side effects, i.e., the clots, strokes, etc, occur after X-amount of months, I'll at least have statistical information to help me make my decision.  If the more terrible side effects' timing is all over the place, from the first infusion to the 20th, then my decision will be harder.

Any thoughts?

Saturday, 22 October 2016

An argument against statin use for GBM

A new study by a joint team from UCLA, UCSD etc. has important implications for the use of statins as a repurposed GBM therapy.   The study shows that statins were selectively toxic to Normal Human Astrocytes, and relatively ineffective against two GBM cell lines (U87EGFRvIII, and GBM39 - a patient derived line with EGFR amplification and EGFRvIII expression).

This can be understood by the fact that normal astrocytes rely on de novo cholesterol synthesis, while GBM cells have much less reliance on cholesterol synthesis, but instead import cholesterol from the brain environment via low density lipoprotein receptors (LDLR), in a parasitic manner.  The study showed that GBM clinical samples have increased expression of LDLR and suppressed levels of enzymes involved in cholesterol synthesis.

A different strategy was found to be far more effective, which involved an experimental drug called LXR-623, an LXR-beta agonist.   In an orthotopic GBM mouse model this drug extended mouse survival significantly without toxicity in the healthy brain.  By stimulating LXR-beta, the drug suppresses LDL uptake into cells and increases cholesterol efflux from the cell, selectively depriving the GBM cells of cholesterol.  The drug is brain-penetrant and has already been in phase 1 safety and pharmacokinetic/pharmacodyamic trial with healthy volunteers.

As a non-approved drug, LXR-623 is not generally available to patients, but we hope to see a trial for GBM initiated based on this excellent preclinical work.

Study abstract:  An LXR-Cholesterol Axis Creates a Metabolic Co-Dependency for Brain Cancers  (full study will be uploaded to the Library, folder 2)

Thursday, 20 October 2016

Peptide Vaccine for 5 year old with GBM


Thanks to everyone for contributing to this great resource.  First a profile of our daughter's condition and then a question at the end.


Our 5 year old:

DOB 9/2/2011
Brooklyn, NY

9/9/2013 admission to:
Weill-Cornell Medical Center
Right neck abscess lanced and drained

March 18th, 2016 admission to:
Weill-Cornell Medical Center
Mass discovered in head after experiencing headaches for a few weeks
Left occipital/parietal brain tumor
Operated 3/19/2016
"Full Gross Resection"
Pathology determines Glioblastoma Multiforme "methylated" 

Transferred to Memorial Sloan Kettering
Photon Radiation treatment for 33 days (Dr. Suzanne Wolden)
Temozolomide chemotherapy for 43 days
MRI on 7/8/2016 'clear' 

'Maintenance' regime of temozolomide prescribed for 12 cycles (5 days chemo/23 days off)
Currently in 5th? cycle 
MRI on 10/5/2016 'clear'
Genetic sequencing/testing
• Cornell _ Precision Medicine
• MSK _ Methylation array
• MSK _ Impact Testing
• Caris Test

Other Diagnosis via 3rd party (non-MSK) bloodwork
• Positive (via Plasma test) for CMV antibodies
• Positive (via DNA test) for Herpes-6 active case

Other Treatments
• Cronaxal (
• Cannibas oils (THC/THCa/CBD)
• Chinese Herbs (prescription pending)
• Supplements- Vitamin B, C, D, L-Lysine, Curcumin, sodium selenite, paw paw, cayenne pepper w/garlic, green tea extract, etc.
• Ketogenic diet since appx. June 2016

We are so grateful that our daughter is NED to-date but are considering engaging in an off-label customized peptide vaccine treatment coming out of Tubingen Germany via CeGaT.  Has anyone in this community had any experiences with this?

Treatment description from their literature:

Our personalized peptide vaccination approach aims to train the immune system to recognize
specific “non-self” antigens (neoantigens) which are predicted to be specifically presented by the
patient’s tumor cells. In order to identify tumor-specific mutations, the patient’s tumor and normal
tissue sample (mostly blood) are analyzed using the modern next-generation sequencing technology.
Many of the identified tumor-specific mutations lead to alterations in proteins. Bioinformatic
prediction algorithms are subsequently applied to select those mutated peptides which are most
probably presented on the surface of the tumor cells by the patient-specific HLA molecules and
which have the potential to elicit a strong immune response. These selected peptides are synthesized
and injected as a vaccine in order to stimulate the immune system and to enhance the propagation
and activation of immune cells that specifically attack tumor cells presenting the mutated peptides.
In order to further boost the vaccine specific immune response, an immune stimulatory adjuvant (Leukine) is

co-applied at the injection site.

While they have had good results to-date they have not treated any children.  This obviously concerns us.  Does anyone have any experience with peptide vaccines in children?  The doctors say that theoretically there shouldn't be any difference beyond dosage/body mass.  What are people's thoughts on:

1) The logic of this treatment approach

2) Experiences?

3) Peptides in children

4) Experiences with FDA Personal Use Exemption program / importing off-label drugs from overseas

Again, thanks to everyone for help!

Brooklyn, NY

Wednesday, 19 October 2016

SPMF treatment and my husband

Dear all,

let me now just post facts.
(This is continuation of

Attached are two MRI descriptions right before and right after the SPMF treatment (2 hours 28 consecutive days).

Please, see for yourself.

I further should mention that:
1. My husband has ongoing immunotherapy in his body with DC vaccines. Started in August.
Takes also metronomic cyclophosphamide and MGN-3.
(Not sure how effective that is when one has 12mg of dexamethasone.)
2. Half a month before the travel to India we started Kava Kava (1-2 grams a day) and continued till mid September.
(Than we ran out of it.)
3. For three days he had Graviola leaves and twigs decoction.
4. Since we were in Ayurvedic centre, he ate in Sativic restaurant. Organic local food.
5. Was touched on his head by local person and prayed for.
6. He forgave one man who harmed him in the past.

This is all what was new and could add to the SPMF treatment. One never knows what works to which extent.

As told by Dr. Vasishta, tumor should keep shrinking and dying. (I hope it will do.)

What was not new is: Melatonin, Vitamin D, Reishi, Cordyceps, Omega 3, Curcumin, Boswelia, ...

All the best and take care,

P.S. my introductory post is:

L-Arginine Modulates T Cell Metabolism and Enhances Survival and Anti-tumor Activity

Link to article:

Aynone taking l-arginine and your  thoughts on supplementation?

Tuesday, 18 October 2016

39 y/o female - Biopsy results

Hi -

My friend was told she has GBM.  Here are the results of her biopsy:

Left occipital mass: stereotactic biopsy:
Integrated diagnosis: GLIOBLASTOMA, IDH WILD TYPE, WHO 
Histological classification: GLIOBLASTOMA
Molecular information: 
(EXON 4)

I'm out of practice on everything except MGMT.  Can someone please help me understand what else this tells us, and what drugs this may prioritize for her?  She's not as willing to take lots and lots of pills as my Dad was.  I would like to pick maybe the top 5 if we can.

Thank you!

Monday, 17 October 2016

Garlic and other veggie pills antiproliferative and antioxidant activities

hi Stephen and all,

I came across this Canadian study .. It mentions that garlic and broccoli sprouts ( sulforaphane) had almost 100% inhibition of U-87 glioma cells proliferation. Anyone here taking them? How much mg dose per day should be taken? Thanks



Have you heard any results from the CCNU/TMZ combination study out of Germany?  Final completion date was supposed to be December 2015.  There must be some information floating around about the results, but I can't locate it.

Sunday, 16 October 2016

Hi everyone thanks for inviting me.  My name is Martina
I have a question is someone on the blog who had or have brainstem tumor grade 3/4 and is after surgery?

Friday, 14 October 2016

Hyerbaric oxygen plus nimustine (ACNU) in a glioma xenograft model

Pubmed abstract
full study uploaded to Brain Tumor Library, folder 2 (Therapies, preclinical), Hyperbaric oxygen subfolder

The SU3 human glioma cell line was injected into the flanks of nude mice.  ACNU is a nitrosourea in the same class as CCNU (lomustine) and BCNU (carmustine).

Thursday, 13 October 2016

Long term analysis of NOA-04 for anaplastic (grade 3) gliomas published today

This was a randomized phase 3 trial testing radiation therapy (followed by chemotherapy with PCV or TMZ at recurrence) versus chemotherapy (followed by radiation therapy at recurrence). Half the chemotherapy patients were randomized to PCV and the other half to temozolomide.

In this new update, patients are divided into three molecular groups:  CIMP negative, CIMP positive 1p/19q codeleted, and CIMP positive 1p/19q non-codeleleted.  CIMP positivity in this study is essentially another way of saying "IDH-mutant" as IDH mutation virtually always leads to the CpG Island Methylator Phenotype (CIMP).   The latter two subgroups correspond to molecular oligodendroglioma and molecular astrocytoma, respectively.

One of the more important findings in this study is that PCV was superior to TMZ in the molecular oligodendroglioma subgroup.  (This image shows progression-free survival, but the same trend was evident in time-to-treatment failure analysis and overall survival).

On the other hand, PCV and TMZ were more or less equivalent in efficacy for the molecular astrocytoma group (CIMP+ non-codel).

These findings support the use of the PCV regimen for molecular oligodendrogliomas, however it's still an open question whether the addition of vincristine (V) to procarbazine (P) and CCNU (C) adds any benefit.  Some retrospective evidence suggests that PC chemotherapy (without vincristine) is comparable in efficacy to PCV.

This study was published in the November 2016 edition of Neuro-Oncology, and the figures above are taken from the Supplementary figures.

Tuesday, 11 October 2016

Photodynamic therapy

Hi All, anyone heard of photodynamic therapy? I read about sone Australian studies that had considerable success with it. Anyone tried it? If yes, can you please share information: where and whether it was effective?
Many thanks

Monday, 10 October 2016

Best Medication choices for Immunotherapy

Hello.  I'm relatively new to the blog and am wondering what your opinions are on the best medications to be on while doing Temodar and Immunotherapy through IOZK.  My husband will begin treatment in November and I want to start pushing his NO here for any medications that he should start taking now.

Thank you all so much!

Saturday, 8 October 2016

Tumeric powder and cancer

Hello everyone

This programme was broadcast a couple of weeks ago.  No media organisation is perfect, but at least the BBC is not sponsored by commercial organisations.  Interesting to see that it re-emphasises the need for tumeric to be cooked/absorbed with fats to be effective.

Thursday, 6 October 2016

Looking for help with our cocktail

Hi everyone,
I'm new to this blog and would love to get some advice. My dad was diagnosed in December 2015 with a glioblastoma. Unfortunately it's inoperable because of it's location (corpus callosum). I've just read Ben William's book and I think it's very sensible to try the cocktail approach. He finished radiation plus Temodal and is now in his 5th cycle of Temodal. After the 6th cycle he'll be switched to metronomic Temodal. He also takes:
- dexamethadone 4mg/day
- D-L-methadone 1,75ml/2x day
- Heparine injections because of a thrombosis
- Keppra 500mg/2x day
He is also using Optune TTF. But there's more that we want to do. I'm very interested in DCA but worried if it might interact with the methadone. From what I've read online, he should start on a low dose and without caffeine as brain tumor patients can't seem to tolerate a higher dose. Do you think that we should give it a try? I think it's pretty hard to get...
Additionally we're considering the following:
- Melatonin plus Aloe Vera (again I'm worried because of the methadone as it makes him really tired)
- Fish oil (Omega 3)
It would be so helpful for us if you could give u your advice!
Thank you so much

Tuesday, 4 October 2016

Medicinal Mushrooms

Hello everyone!

I currently have my husband taking three different kinds of medicinal mushrooms: Turkey Tail PSK, Maitake D fraction, and Reishi.  Originally I started him out on pills, but between all the other supplements and medications, the mere sight of his pills makes him want to gag.  He seemed to really detest the mushrooms out of them all, so I switched to extracts in a smoothie.  I have been able to get away with that for a few weeks until recently.  He swears he can taste them.  His taste for food has definitely changed these past few weeks of treatment (he is in week 5 of 6 of radiation/TMZ).  Normally never a picky eater, now he has developed extreme distaste for foods he normally loved.  So my question to you all is: If I had to give up one or two of the mushrooms, which would you remove?  Or perhaps you have another suggestion for disguising them that works particularly well for the pills you can't stand?  I hate to give them up.  I'm doing everything I can think of so far to keep his immune system healthy.  His blood work has been good each week despite the fact that I refused to give him the antibiotic his oncology team prescribed and I can't help but think that the mushrooms play a role in that.

Saturday, 1 October 2016

Phase 1/2 trial in Japan: dendritic cell + glioma cell fusion immunotherapy  (the full study will be added to the Immunotherapy folder of the Library)

This trial recruited 22 newly diagnosed and 10 recurrent GBM patients.  The therapy consisted of autologous glioma cells (lethally irradiated) chemically fused with autologous dendritic cells.  The fusion cells were also transfected with poly I:C (a synthetic double-stranded RNA analog) and small interfering RNA for IL-10 (IL-10 is an immunosuppressive cytokine).  For the newly diagnosed patients this treatment was added onto standard treatments (radiation and temozolomide).

Median progression-free survival (PFS) and overall survival (OS) for the 22 newly diagnosed patients was 17 and 30 months.  Average age of these patients was 56.7 years.

Median PFS and OS (from recurrence) for the 10 recurrent GBM patients was 11 and 17 months. Average age was 50.1 years.

This is certainly one of the best phase 2 outcomes for newly diagnosed GBM yet published in a peer-reviewed journal, and the results for recurrent GBM are also impressive (though only 10 recurrent patients were treated and the average age was on the low side).