Friday, 30 December 2016

Long-term control and partial remission after initial pseudoprogression of glioblastoma by anti–PD-1 treatment with nivolumab

That is the name of a letter published online yesterday in Neuro-Oncology journal.  Click on link to the partial extract here.

I'll be uploading the full one-page letter to the Library.  Immunotherapy folder, Immune checkpoint inhibitors subfolder.

Thursday, 29 December 2016

Cannabis oil

Has anyone purchased cannabis oil in the US? I looked up the shop in CA ( from the link provided here) but was a bit confused as to which kind to buy and the logistics of it. Would it even be possible to order and have it sent to us? We live in New Jersey, so I wonder if anyone had any luck buying it on the East Coast? Thanks!

Saturday, 17 December 2016

Johns Hopkins response to cocktail therapy

Found this interesting.  A couple of neurosurgeons at Johns Hopkins were having an open Q and A about brain tumors this past week.  I asked a simple question about combo therapy and got the below response.  I guess this response should be expected though so not all that surprising. 

Dear all,
my 17-year old son will finish RT and temodar on December 28th and we are planning to go to Van Gool's clinic in mid January for the dendric vaccine. In the meantime, I would appreciate advice on supplements for him to take in the meantime. Currently the only one he can tolerate is melatonin, but my hope is that he can do much more once he is off temodar and radiation.  If you could include the dosage that would be great! He is about 140 lb. ( 63 kg.)

Friday, 16 December 2016

Optune OS for rGBM (at first recurrence)

I initially dismissed the idea of using the Optune device because the OS for rGBM in the EF-11 trial (as shown on the Optune website) was only 6.6 months vs. 6 months using chemotherapy.

However, since reading the PRiDe (Patient Registry Data) analysis (and Stephen's summary on of Optune users I'm becomming more optimistic. The PRiDe analysis is based on a separate database of 457 patients using Optune outside of clinical trials. The PRiDe analysys parses patient data by the number of recurrences and indicates an OS for patients at first recurrence  of 20 months (from the time of recurrence).

The source of this comes directly from the  PRiDe study:

The table indicates that Optune works substantially better for 1st recurrence patients than for patients with 2 or more recurrences.

It appears that the reason the OS of 6.6 months from the EF-11 study is so much shorter (6.6 vs. 20 months) is because only 9% of the patients in the EF-11 study were at first recurrence (i.e.  if 91% of the patients were at 2 or more recurrences and if these patients do much worse, then the OS of the entire group is heavily weighted towards patients with more than one recurrence - resulting in a much lower overall surviva).

The source of this is also shown within the PRiDe study:

It was pointed out to me that there are some flaws with the PRiDe data:

1. The research was based on patients outside of a clinical trial, so these patients may have used additional treatments.

2. The OS of 20 months comes from limited follow through data in that the 20 month OS is really based on the average of a range of 14 months to 26 months from the Kaplan-Meier data. I’m a little ignorant when it comes to Kaplan-Meier data, but somehow they use averages when there is insufficient follow-up data . It was explained to me that the 20 month OS is likely overstating the true OS, but it can still be concluded that the OS for first recurrence using the Optune (and possibly additional treatments) was at least 14 months.

So my understanding of the data is that patients using the Optune at first recurrence would have an expectecd OS (from recurrence) of closer to 14 months than the 6.6 months from the EF-11 study.

The PriDe paper is in the library that Stephen W put together.

Mike B

Thursday, 15 December 2016

free live-streaming tonight Mara Gordon talk (Aunt Zelda's)

I was made aware of this through a blog contributor and figured others out there might be interested.

The event is called "Treating Cancer with Cannabis"

Register here if interested:

Monday, 12 December 2016

Therapy of Glioblastoma Multiforme Improved by the Antimutagenic Chloroquine

Methods: In a prospective controlled randomized trial, 18 patients with GBM underwent standard treatment with surgery, chemotherapy, and radiotherapy; nine received an additional 150-mg dose of chloroquine daily starting 1 day after surgery and continued through the observation period. Nine matched patients were included as controls. Neuroimaging studies and clinical response were periodically compared. The follow-up period ranged from 24 to 50 months. Survival time was defined as the main outcome measure.

Results: Survival was significantly longer in chloroquine-treated patients than in controls (33 ± 5 and 11 ± 2 months, respectively [p < 0.0002]). At the end of the observation period, four patients (46%) treated with chloroquine were alive, two had evidence of tumor remission after 2 years; in another two, tumor recurrence developed after 2 and 4 years of remission, respectively. No control patient survived more than 22 months after surgery.

Conclusions: Chronic administration of chloroquine greatly enhanced the response of GBM to antineoplastic treatment. Because the cytotoxicity of chloroquine on malignant cells is negligible, these favorable results appear mediated by its strong antimutagenic effect that precludes the appearance of resistant clones during radiotherapy and chemotherapy.

Source Here

What are your thoughts on immunotherapy to prevent GBM recurrence?

If the IDH1 tumor my girlfriend has is currently in complete remission, would it be fruitless to discuss with oncologist to enter a trial to take checkpoint inhibitors (like Yervoy and Opdivo) to prevent recurrence or to kill remaining cells that may not be seen via MRI?

Thursday, 8 December 2016

Best company for insurance coverage for GBM?


With 'ObamaCare' potentially under threat in the new administration we are considering changing insurance companies.  We think that the opportunity to get the best insurance for GBM coverage while the pre-existing condition coverage is intact may be smart.

We have private insurance so any company is on the table.

What are peoples experiences with this.  Is there an insurance company know to be the best for coverage?

Thanks as always


Metformin's Debilitating Side Effects

My sister stopped taking metformin as she could not tolerate its side effects. She complained from severe nausea, dizziness, and fatigue. Anyone knows some tricks to overcome this problem?

She currently is on Temodar, Keppra, Vitamin D3, Curcumin, and Memantine. 

Thank you.

Going off Avastin, considering Optune

Sorry for the delay in replying about the Avastin causing more tumors.  For some reason, I can't get that posting to accept this reply to SteveMPFP so I'll start a new thread.   First, an update...

I've decided to go off of chemo until Jan 7. The Avastin was making me have chemo brain and neuropathy and I decided I simply don't want to live that way. Plus, this recent information out about Avastin promoting the formation of new, "satellite" tumors really hit home. While I was pleased that the Avastin took care of my swelling, I did, indeed, get a new tumor while on it. I told my new NO that we have never really given the supplements, especially the CO (cannabis oils), a fair chance because I've always been on a chemo at the same time. Avastin, for example, somewhat shuts down the blood brain barrier as these publications attest. He agreed I could give the supplements and CO a fair shot. It's a bit scary.

He wants me to consider Optune, the non-chemical therapy that sends electrical fields into the brain. For those who are new to this, these fields interrupt cell division by forcing the cells' microtubule subunits to align to the electrical grid and since it's only tumor cells that are dividing, the normal brain cells are unaffected, so the theory goes. I have already started the process of getting approved.

But a thought occurs...would Optune not also interfere with supplements? If they cross the blood brain barrier in any sort of a polar form, with any sort of an ionic bent or even an R-group that is even slightly positive or negative, wouldn't the molecules' conformation be affected by an electrical field just like the cells' microtubules are? Your thoughts?

Wednesday, 7 December 2016

Dear All,

I kindly ask for advices regarding Vitamins/Meds I could give my dad. I am new to all of this, doing my best by reading studies and this blog. My dad had surgery on August 3rd, diagnosed on August 18th. We live in São Paulo-Brazil and there are no clinical trials here and a bunch of other stuff available in the US/Europe. Which makes my situation a little harder but we plan to travel for vacation to the US in January so maybe then I can buy some meds/vits. His tumor is on the right frontal lobe. He's doing great, no side effects, no after effects whatsoever. Still working, going to the gym, golfing and playing tennis. He's 1,75m and 87kg.

So long story short:
He had pulmonary embolism after surgery which postponed the beginning of his cancer treatment
IMRT began on October 3rd with Temodar.
Temodar 42 days-cycle ended on November 13th - 145mg/daily
IMRT ended on November 17th - total of 6000cGy (there were a few holidays in-between)

Currently he is on a pause from his cancer treatment, MRI scheduled for this Friday (high hopes everything is fine!). His onco explained us last week that from now on he is going to be on a 5 days on / 23 days off of Temodar cycle for the next six months, starting on December 17th.
First cycle with 300mg, from second cycle on 400mg.

Although I know this is the standard protocol, I feel like there are more stuff I can do for him.

His current meds/vits are:
Phenytoin 100mg 3x/day - he started having seizures, that's how we found out
Carbamazepine 200mg 2x/day - same reason as above
Rivaroxaban 20mg 1x/day - for the pulmonary embolism
Dexamethasone 4mg half pill 1x/day - for edema
Vitamin C 1mg 1x/day  - got the idea from here, approved by the doc
Vitamin D 2000IU 1x/day - got the idea from here, approved by the doc
Green tea whenever he wants to drink it which is like, 2x/week - got the idea from here, approved by the doc

Once he starts the next chemo cycle, onco told him to take Trimethoprim/sulfamethoxazole 3x/week also for six months.

Biopsy report: 
AE1/AE3 - negative
EMA - negative
GFAP - positive
Ki67 - 50% positive
Neurofilament - negative
Protein S100 - positive
ARTX - nucelar reaction preserved
IDH1 - negative
Mutations p.Arg132Cys / p.Arg132Gly / p.Arg132His / p.Arg132Leu / p.Arg132Ser in the 132 gene codon IDH1 were not found
P53 - plurifocal reactivity (2+/4+)
EGFR1 - positive, score 220/300
MGMT - negative (unmethylated)

Is there anything I can give him to make him better? Am I missing something? What else could I do for him?
I accept every advice and suggestion, I'm kinda lost and blind here but always hoping for the best.

Today is his 61st Birthday.
Happy birthday dad! We love you so much!

Thank you for being the best support system anyone could've asked for!
My heart goes out to every and each of you!

Grade 2 oligodendroglioma: Cocktail suggestions while on PCV?

Dear all,

I'm looking for some suggestions on ingredients to add to my wife's cocktail while on PCV chemo for a grade 2+ oligodendroglioma (large and inoperable). The treatment might be followed by proton radiation if deemed necessary.

Currently she is taking the following daily:

Keppra 1500mg
Curcumin Longvida 1600mg
Ashwagandha 1000mg
Boswellia 1000mg
Pterostilbene 100mg
Vitamin D 5000 IU

Planning to add:


She also plans to do water fasting for the first five days of each cycle while taking the Lomustine.

We would of course like to make this treatment as effective as possible so if someone has some recommendations I would much appreciate it.

Many thanks

Monday, 5 December 2016

Triple combination of dual checkpoint blockade + radiosurgery -> 100% mouse survival

I don't recall seeing a mouse study this successful before.  This study utilized the orthotopic, syngeneic GL-261 mouse glioma model.  Triple combination of PD-1 antibody, TIM-3 antibody, and stereotactic radiosurgery led to 100% mouse survival at day 100, while all untreated control mice were dead by day 30.  Furthermore, the "cured" mice were completely resistant to new tumor formation when re-challenged with glioma cells.  I'll upload this study to the Library, in the Immunology and Immunotherapy folder, Checkpoint inhibitor subfolder.

Sunday, 4 December 2016

Recommended Institutions, Neurosurgeons, Neuro-oncologists

It occurred to me that we need a listing of preferred institutions and doctors by general area.  I'll start with a few suggestions of my own, but please add your nominees in the comments and I'll edit the list accordingly.  Once we get a good list going, I'll make a page out of it for easy reference at the top of the blog.


Institutions: UCLA (Los Angeles), Cedars-Sinai (Los Angeles), UCSF (San Francisco), Swedish Medical Center (Seattle)

Neurosurgeons:  Linda Liau (UCLA), Mitchel Berger (UCSF), Keith Black (Cedars-Sinai), Charles Cobbs (Swedish), Brian Toyota (Vancouver, Canada),

Neuro-oncologists:  Timothy Cloughesy (UCLA), Albert Lai (UCLA), Santosh Kesari (John Wayne Cancer Institute at Providence Saint John's Health Center), Jethro Hu (Cedars-Sinai)


Institutions: Duke University (North Carolina), University of Florida (Gainesville), Dana-Farber Cancer Institute (Boston), Beth Israel Deaconess Medical Center (Boston), Massachusetts General Hospital (Boston), Cleveland Clinic, Memorial Sloan Kettering Cancer Center (New York), Johns Hopkins Hospital (Baltimore)

Neurosurgeons: Allan Friedman (Duke), John Boockvar (Lenox Hill Hospital, New York),

Neuro-oncologists: Roger Stupp (Northwestern), Eric Wong (Beth Israel Deaconess), Benjamin Purow (University of Virginia)


Institutions: German Cancer Research Center - DKFZ Heidelberg

Neuro-surgeons: Hugues Duffau (Neurosciences Institute of Montpellier, France; supratotal resection of low grade gliomas)

Friday, 2 December 2016

Avastin Aids in the Formation of Satellite Tumors?

This just in from Uncle Ronnie's moonshot program:

I have had a new tumor form, still small thankfully, since going on Avastin.  The research is still preliminary but if it turns out to be correct, this would obviously be very disturbing.

I am many of you have had the same thing happen?

Saturday, 26 November 2016

Considering treatment options for high grade diffuse midline glioma H3k27m for my 8 year old daughter

Hi all,

Thanks so much to Stephen for your in depth reply to my questions about my 8 year old daughter and invitation to this blog. We moved to Norway in July and my daughter was diagnosed in early September with high grade diffuse midline glioma with H3K27m mutation after an extended biopsy, where it was determined that the tumor was not resectable. She underwent 3 further operations to have a double valve shunt put in to relieve hydrocephalus symptoms. She finished 6 weeks of radiation and Temodal about 10 days ago. The doctors want to start her on Temodal/Lomostine 4 weeks after radiation finished. If we follow this path, we could also have a full molecular analysis done and, upon recurrence, may possibly be able to access a trial using afatinib for BI1200.120, if applicable, or another targeted agent. I would also push for using repurposed drugs in the cocktail approach if possible and our conservative doctors could be convinced. 

We are trying to explore other options, and thanks to Stephen, learned about a new phase I peptide vaccine trial opening for paediatric glioma patients with mutation H3.3K27m based in San Fransisco. It is for patients who have completed 6 weeks of radiation and have not yet started chemo again, which is exactly where we are now.

I am finding it so difficult to determine what would be the most promising, preferably least toxic option for my daughter. Any input on how promising a peptide vaccine targeted to this kind of mutation could be? Compared with temodar/lomostine/cocktail approach?

Many thanks in advance for your input.


Friday, 25 November 2016

FoundationOne test now includes "Tumor Mutational Burden" quantification

To my surprise, I just learned that FoundationOne reports now include a quantification of "tumor mutational burden" expressed as number of mutations per megabase of DNA.  This would be the most accurate test for hypermutation.

Foundation One webpage

I believe there is a link between MGMT methylation status, and risk of hypermutated recurrence, which could help explain the increased risk of progression to hypermutated secondary GBM recurrences for IDH1-mutant low grade gliomas (which are usually MGMT methylated) treated with TMZ.

I'd especially recommend FoundationOne for recurrences of MGMT methylated gliomas post-TMZ treatment. This test would tell you if the tumor is hypermutated and therefore if further TMZ could actually make the situation worse.  Unfortunately patients outside the US must self-pay, and the discounted price as of September 2014 was $4600 US.

Friday, 18 November 2016

Other Blogs/Stories

Hey all - I wanted to ask about other stories, since this is about both stories and cocktails.

I've had a blog for years but it's morphed into one about my wife Alison, as you might imagine, after she was diagnosed with GBM.

I just wrote an entry about the night we found out:

And my letter to Joe Biden got some traction:

Finally, here's my first real entry about my wife's condition:

I follow Jessica's blog, Toom-ah? What Stinkin' Toom-ah, which has been a great source of information and comfort. 

Does anyone else have a (well-written) blog to recommend or a blog of their own?

Looking for a free-thinking Neuro Oncologist in the UK for a second opinion. Any suggestions?

Hi there

Can anyone recommend a good private (or even better NHS) neuro-oncologist or oncologist in the UK who is willing to think outside the box and support the cocktail approach? If I find the right person I might transfer my treatment over to them, so ideally they would be Leeds-based. My current oncologist in Leeds (where I live) is unfortunately not very helpful and doesn't support the cocktail approach at all. I want to try thyroid hormone T4 suppression with methimazole and cytomel (synthetic T3 hormone) alongside radiotherapy (although it is probably too late for that now, as I resume this afternoon) and other treatments. 

As a bit of background I am a 29 year old male, first diagnosed in June 2015 with a grade 2 diffuse astrocytoma. I was encouraged to do a year of Temzolomide chemotherapy to shrink the tumour and then hopefully they could operate. However since August of this year a scan indicated that the tumour had changed and become more aggressive. They recommended radiotherapy but during this the tumour became more aggressive and I was getting terrible headaches and vomiting. They ordered an emergency MRI scan to see what was happening and I was told that I needed emergency surgery to relieve pressure and try and debulk the tumour. A biopsy following surgery showed that my tumour has become a grade 4 Glioblastoma Multiforme. My current plan is to finish off the last ten days of the radiotherapy beginning today, and will then pursue some kind of chemo - either more Temozolomide or PCV. I want a second opinion because more Temozolomide doesn't seem to be an approach supported by the evidence. 

Any suggestions gratefully received!

Many thanks

Liam Raftery

Thursday, 17 November 2016

Anticancer mechanisms of cannabinoids

Excellent paper on why cannabis should be part of our GBM routine:

*Drug repurposing for glioblastoma based on molecular subtypes using a screen of 1348 FDA-approved drugs*

Found this interesting study.  Hope it's helpful!

*I also put an image of GBM subtypes at the bottom for some context.

See full source of study here


A recent multi-platform analysis by The Cancer Genome Atlas identified four distinct molecular subtypes for glioblastoma (GBM) and demonstrated that the subtypes correlate with clinical phenotypes and treatment responses. In this study, we developed a computational drug repurposing approach to predict GBM drugs based on the molecular subtypes. Our approach leverages the genomic signature for each GBM subtype, and integrates the human cancer genomics with mouse phenotype data to identify the opportunity of reusing the FDA-approved agents to treat specific GBM subtypes. Specifically, we first constructed the phenotype profile for each GBM subtype using their genomic signatures. For each approved drug, we also constructed a phenotype profile using the drug target genes. Then we developed an algorithm to match and prioritize drugs based on their phenotypic similarities to the GBM subtypes. Our approach is highly generalizable for other disorders if provided with a list of disorder-specific genes. We first evaluated the approach in predicting drugs for the whole GBM. For a combined set of approved, potential and off-label GBM drugs, we achieved a median rank of 9.3%, which is significantly higher (p<e-7) than 45.7% for a recent approach that also uses the mouse phenotype data. Then we applied the approach on GBM subtypes. Analysis result shows the variations of enriched pathways, associated phenotypes and prioritized drugs across different subtypes. We ranked the first-line chemotherapy for GBM in different positions for each subtypes, and the rank variation was consistent with the previous finding on different drug responses among subtypes. In summary, this study makes an effort towards translating the molecular stratification into better survival for GBM.

Top-ranked pathways for different GBM subtypes.

Fig. 4. 
Top-ranked pathways for different GBM subtypes.

Table 5.
Top-ranked drug classes for four GBM subtypes.
1AntipsychoticsAntipsychoticsProtein kinase inhibitorsAntipsychotics
2Protein kinase inhibitorsAntidepressantsAntipsychoticsProtein kinase inhibitors
3AntidepressantsProtein kinase inhibitorsOther antineoplastic agentsAntidepressants
4Blood glucose lowering drugsBlood glucose lowering drugsAntidepressantsAntiinflammatory and antirheumatic products
5Cardiac stimulantsCardiac stimulantsBlood glucose lowering drugsAntithrombotic agents
Exciting New Advances in Neuro-Oncology(1) - Luobulingka - 罗布林卡
GBM Subtypes  - Source here

Wednesday, 16 November 2016

Sad news

I've posted a few times about my husband's battle with his brain cancer. Unfortunately my husband lost his battle a few days after turning 34 years old on November 3rd. Watch my husband take his last breath was the hardest thing I have ever done but I'm grateful I was able to care for him in the comfort of our own home and give him all my love up until the last second of his life. I want to thank everyone here for their posts, info, and support. Special thanks to Stephen for all the help! I truly believe that all the supplements and some of the off-label meds not only extended my husband's life but gave him a good quality of life until his last couple of weeks. We miss him terribly but know he is in a better place now.  This is a 2 minute video I made ->

Monday, 14 November 2016

Help in evaluating additives to daughter's regime

Hello all-

We have recently been advised by Raymond Chang in NYC to add a number of supplements and off-label drugs to our daughter's regime.  Her current situation/regime:

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

What Dr. Chang recommends adding:


• Chloroquine; off-label malaria medicine


• Ruta 6

• Coriolus PSP capsule - 1 capsule 3x/day

• Scorpion Venom (1/4cc @ 3 times/day)
     - Escozine (difficult to get in USA)
     - Dr. Connealy _

• Add MCT oil; ie coconut oil extract (unless already in ketogenic ketosis)

• Herpes-6
      - Add Colloidal Silver to her diet

What do you guys think about how we see if we should add any of these?  Some are very difficult to get (Scorpion Venom).  Does anyone have any advice / experiences in using these supplements that can comment?


Advice for making most of last rounds of TMZ? (14/11/2016)

Hi Everyone,

Just wanted to update you on our progress and get some advice or recommendations (here is our intro to group post). Dad will be starting his 4th round of chemo this week, with 2 rounds left after that. We have had a letter stating the MRI results from September, the first one since before the start of chemoradiation in July. It says there is residual tumour at the site of original surgery (he had total resection at the time), plus a new nodule in the region of the parahippocampus (this looks to me to be deeper and therefore less like to be operable if it becomes more of a problem). Dad is still 100% and apart from some tiredness and a bit of weight loss he hasn’t had any other noticeable symptoms. 

Below is what he is taking at the moment. I have tried to add to the cocktail each round. I was a bit reluctant to add more considering this is a fair amount of tablets, but with the MRI result I wanted to make sure we are targeting the tumour from as many angles as possible (in red are things we have added to or have changed).

Prescription 6 months of Adjuvant Chemo therapy following Radiotherapy (to-date 4 out of 6 completed):
Temozolomide (Temodal - Merck Sharp & Dohme 350mg capsule, BMI based dosage) morning for 5 consecutive days every month following Radiotherapy
Ondansetron(Milpharm 8mg tablet) anti sick taken morning for 5 consecutive days every month with Temodal

Ongoing Prescription by special request:
Celebrex (Pfizer 100mg capsule)    1x morning
Chloroquine (Avloclor - Alliance Pharma 250mg tablet) 1/2 tablet twice a week in morning (available off prescription)
Cholecalciferol 800IU (Fultium D3 - MA Hodder Internis, equiv. to 20 micrograms Vitamin D),  1x capsule in morning (available off prescription under other brands)

Ongoing Additional Supplements:
Cannabinoids (CBD Brothers CBD Oil Blue Edition) 3x drop morning and evening
Mycelium Extract psp50 (ORIVeDA 350mg capsule) 3x morning and 3x evening
Fish Oil (Omega 3 - Solgar 950mg capsule) 1x morning and 1x evening
Berberine (Swanson 400mg capsule)     1x morning and 1x evening
Boswellia (Solgar 420mg capsule) 1x morning and 1x evening
Ashwagandha (Solgar 400mg capsule)   1x morning and 1x evening
Milk Thistle Fruits (Silamarie - Bio-Health 450mg capsule) 1x morning and 1x evening
Sulforapahne (Greenwoods 400 mcg capsule) 1x morning and 1x evenin
Optimised Curcumin Extract (LONGVIDA RD 500mg capsule) 1x morning
Mega Green Tea Extract  (LifeExtension 725mg capsule)1x morning
Optimized Resveratrol (LifeExtension 250mg capsule) 1x morning
Zinc (Solgar 50mg tablet) 1x morning
Selenium (Solgar 200mcg tablet) 1x morning
Senna (Senokot - Reckitt Benckiser, 154mg tablet), 1-2 as required, evening, taken only to offset Anti-Sick tablet (Ondansetron) constipation.
Melotonin (Eurovital 10mg tablet) 1x evening

We would welcome any suggestions of anything we should be adding or removing from our list. Things I am considering adding are:  Sildenafil (viagra), Disulfiram (Antabuse), Tagamet (cimetidine), DCA (dichloroacetate). Most of these we would have to try and get the GP to prescribe or find alternative ways of getting hold of.

If anyone has recommendations of what we should be doing or discussing with oncologist post chemo that would be welcome too.



Update (03/05/2017):  we added cimetidine Jan 2017, Dad has finished 6 months of  Temozolomide and is no longer taking Ondansetron or Senna.

*Sirolimus and Hydroxychloroquine with TMZ increases survival to a 28 month minimum*

I came across this study and the results looked very promising in comparison to standard of care alone for GBM.  However, the sample size is very small and not statistically significant.  With that said, I still think these results are hard to ignore.  Especially since only 3 of 20 patients used this combination and the minimum survival time of the 3 was 28 months. (this individual also had dosage reduced because of grade 2 fatigue so there may be some dosage dependance)

Results: The median survival time of the 20 patients was 13.7 months (range: 2.2 to 37 months). Surprisingly, the 3 patients who received sirolimus and HCQ as an add-on treatment survived for a longer period of time (median 34 months). Transient grade 3 myelotoxicity and grade 2 fatigues were rapidly resolved by treatment interruption or dose reduction.

These patients were much older so would we interesting to see how this therapy would work in younger patients with stronger immune systems.

From Kwan-Hwa Chi, MD in an email to me: " this regimen works better in mesenchymal type of GBM, the worst prognosis one and multiple recurrent case."

See the below link to investigate

Sirolimus and Hydroxychloroquine as an Add-On to Standard Therapy for Glioblastoma Multiforme: Case Report

Thursday, 10 November 2016

Survivin Immunotherapy - Buffalo, NY

This is the first I've heard of this experimental immunotherapy so I thought I'd share it with the group:

If anyone has any further details, please mention it in the comments.
My 38 yo husband was diagnosed with GBM IV. He started with headache and after 12 hours he was paralysed on his left side. The tumor was in his right frontal lobe almost 5cm diameter. They have resected the main mass but it has infiltrated his coropus callosum on area of 1cm, which they say is unoperable. His tumor is IDH-1 wild type and methylated. Next week he is starting his chemo and radioteraphy. I am trying to educate myself between hospitals, work, child but it is too much for one person to handle. Doctors are refusing to use coctail aproach so here I am on my own on this path. I am so grateful to find this site and truly admire all of you for work and support.
This is what we have got so far but I will truly appreciate every tip or insight.
What is crucial at this point?
I am putting him on ketogenic diet.
He is taking
Metformin 500mg twice a day
Dekapote 500mg twice a day
Celebrex 200mg twice a day
Curcumin Longevida 2 capsules a day
Boswelia serrata 600 mg twice
Pterostilbene twice
alfa lipolic Acid once
Green tea extract twice
Broccoli sprout extract once
Reishi 1 caps Coriolus 3g Maitake 3g once
Melatonin 10mg once
Cannabis oil cbd
We have got chloroquine and disulfiram are they necessary now?
As for channel pomp inhibitors I was reading about them but still don't know if you are going for all them during chemo -like telmisartan, nexium, verapamil?
I am waiting for Cymetidine Tagamet - you are using it also during his radiochemotherapy? It is interacting with almost all drugs but I suppose I have nothing else antymigrating in his coctail.
I am a little confused with Keppra and risk of demethylation - if he is methylated is it necessary? If so when it is best to incorporate this?
What else should /could I do? Thank you and wish you all the best !

NanoTherm Therapy - MagForce - hyperthermia

Hello all,

Has anyone heard about the NanoTherm Therapy in Germany (but also other countries)? The idea behind it is to inject magnetic fluid into the tumor, the fluid then is heated through a fast alternating magnetic field and the temperature fights the cancer cells. I haven't found any other research about it, only their own. Also they run a trial since 2014.

I wonder what your opinions are on this? Can it do any harm?

Thank you,


Update Post Avastin, 18 months post diagnosis

My husband, diagnosed May 2015, with inoperable tumor in his right frontal lobe, had the usual radiation/temodar protocol, post radiation chemo only four months. Important to note; 60% of his brain was radiated because of the placement of the tumor(s). After much urging from his UCLA neuro-onc, he had four infusions of Avastin, starting end of August 2016. The results were not what we had hoped, he got weaker after each infusion, to the point that he was back in his wheelchair after being ambulatory post shunt in early July. He is just now clawing his way back from the effects of Avastin, which also include fatigue, and fogginess. It is too soon to tell if Avastin will have any beneficial effects for him. His post Avastin MRI showed a sizable reduction of his tumor and much less inflammation. It also showed possible necrosis.  Two weeks ago he had a major seizure, his neuro-onc can't explain it. I also asked my husband's neuro-onc if he was experiencing aphasia and her response said no, that the EEG showed a slowness of the brain. I'm not sure what that means.  I asked if conflating thoughts, ideas, imagining experiences that didn't occur, word confusion be defined as slowness? And doesn't an EEG just map one moment of time? Would the results of an EEG be different without medication, morning vs afternoon, etc? I need help understanding and also to set my expectations on remapping and what I thought was a pliable brain.  I thought these symptoms would have been a left temporal lobe issues, not right. Does anyone have a similar experience to share?
BTW, his tumor is MGMT methylated and IDH1 non-mutated.

IOZK clinic / NDV

Good morning Stephen and all,

Does anyone has experience with the IOZK clinic in Cologne? I can't find much data on the vaccination they use along with the NDV except in few pediatric cases. Has anyone had success with it in adult Glioblastoma?


Wednesday, 9 November 2016

Other tumor tissue banks?

Storemytumor is very expensive. Anybody knows about other live tissue banks and pricing?

MicroRNA-326 Sensitizes Human Glioblastoma Cells to Curcumin via the SHH/GLI1 Signaling Pathway

I'm trying to make sense of this abstract --  My question is -- is the referenced miR-326 something that one can be treated with?? If so,  how can I get access to it.  Thank you.

Tuesday, 8 November 2016



Do you remember about a year ago there was a story about a bunch of doctors in southeast US, mostly Florida, that wound up dead?  Here's an article published last year on it:  ( 

I stopped following the story but today I ran across this rather amazing news that I wonder about (  This Dr. Ted Broer insists that these doctors all worked on autism and discovered that the autistic kids had been given an enzyme called nagalase in their immunizations.  He states that this nagalase creates a cytokine "storm", paralyzing some kids' immune systems, which ends in a myriad of maladies, one of which, besides autism, is cancer.  An article about also appeared in a FB GBM blog I follow.

Not wanting to get into conspiracy theories, and let me just say I'm in favor of getting kids immunized, I'll just ask a GBM-related question:  is it true that the antidote, as it were, called GcMAF, is a killer of cancers?  Have you heard of this?

PD-1/PD-L1 antibodies and hyperprogressive disease in a subset of patients

Sadly, a new study shows that out of a total population of 131 patients with various sorts of tumors treated with anti-PD-1 or anti-PD-L1 monotherapy, 12 of these (9%) had hyperprogressive disease (HPD) following treatment, defined as an increase in tumor growth rate at least 2 times higher than the reference growth rate (before anti-PD-1 treatment).  The subset of patients with hyperprogressive disease were older on average than the rest of the cohort (66 versus 55 years on average).  "At progression, patients with HPD had a lower rate of new lesions than patients with disease progression without HPD".

The mechanism for this increased tumor growth rate in this small subset is currently unknown.

"By RECIST, a total of 49 (37%) 66 (50%) 15 (12%) and 1 (1%) patients exhibited progressive disease, stable disease, partial response or complete response, respectively".  Therefore, stable disease was the most common response overall.

The study was published today (November 8) as an OnlineFirst article by Clinical Cancer Research.

Click here for abstract

I've uploaded the full study to the Library, Immunology and Immunotherapy folder, Immune Checkpoint Inhibitor subfolder

Saturday, 5 November 2016

Celebrex and Anti-coagulants

On 10/17, my husband was diagnosed with a recurrence of GBM and was removed from his PD-1 trial.  We are now anxiously awaiting another resection and, in the meantime, are investigating potential off-label treatments like Celebrex. Unfortunately, Celebrex apparently increases the chance of bleeding when taken with anti-coagulants, which my husband must take.

I am writing to ask if you or your loved one are taking both Celebrex and Warfarin (or a similar anti-coagulant) and what your experience has been with them. I think this can be addressed by low dosing and careful monitoring, but I would prefer to proceed based on concrete experience than on speculation.

Thank you for your sharing your information.


Thursday, 3 November 2016


A newly published case study describes the case of a 57-year old GBM patient, with poor prognosis due to a KPS of only 50 and postoperative neurologic symptoms.  The patient was being treated for schizophrenia at the time of GBM diagnosis with risperidone at a dose of 6-6.5 mg per day.  He ended up going 5.5 years without recurrence, and then lived for an additional year after first recurrence.  This paper posits a possible correlation of his unexpected progression-free survival with his use of risperidone.

In 2010, Richard Kast published a paper hypothesizing that risperidone, pimozide, and paliperidone could be useful for GBM treatment as 5-HT7 serotonin receptor antagonists.

Additionally, risperidone is a potent inhibitor of D2 and D3 dopamine receptors. D2 has been described as a valid target for GBM therapy:

Finally, a more recent paper by Richard Kast and Marc Halatsch proposing D3 dopamine receptor as a target for GBM therapy.

Anecdotal report on PD-1 treatment with nivolumab/Opdivo -- brain edema

On another thread on this blog, the topic came up of PD-1 agents causing brain edema (on the Gamma Delta T-cell thread).  As it wasn't directly applicable to that thread, I thought a new thread might be useful, for the consideration by others who might be considering anti-PD-1 agents (in this case, nivolumab/Opdivo).  Stephen W and I have been unable to find much published information on the incidence of brain edema with such agents, so I'm here publishing an individual experience that might be useful to others.

On my wife's research protocol, nivolumab was started simultaneously with the initial radiation Tx (so, standard /Stupp protocol+experimental nivolumab).  This might make sense in theory, but it made it difficult to distinguish whether her neurologic symptoms were from the PD-1 agent or the radiation.

Over the six-week period of radiation (daily M-F) she had very gradual worsening of neurologic function.  Since there didn't seem to be any obvious exacerbations around the time of her infustions (every 2 weeks), I attributed the changes to the radiation, and presumed she was more sensitive to radiation effects than most.  In retrospect, I was wrong, and the deterioration in function was mostly from brain edema from nivolumab.

The tumor was in the left parietal lobe, close enough to the speech center to cause some language difficulty at initial presentation.  The radiation Tx was "IMRT" meaning heavier radiation near the tumor bed than elsewhere, though no part of her brain was totally free from radiation.  She lost hair over about 60 percent of her scalp, more than I expected.

She developed a gradually worsening R visual field defect, and gradually developed R-sided neglect.  Also, gradually progressive unstable gait, and gradually worsening short-term memory, gradually worsening word-finding, gradually worsening confusion.  The overall picture was similar to early- to mid-course Alzheimer's.

The first post-tx MRI was a month after conclusion of radiation (with Opdivo infusions continuing every 2 weeks).  I was becoming alarmed that she didn't seem to be bouncing back after radiation stopped.
The MRI showed *severe* brain edema, all on the left side (tumor side).  There was uncal herniation, the kind of thing you might see shortly after severe head trauma.  The NO seemed shocked that she could still walk and talk and do reasonably well on a cursory neurologic exam.

A couple of infusions were skipped, and most of her symptoms gradualy improved.  However, focal motor seizures didn't improve.  These were very subtle in the first few weeks, but have become more obvious over time and required increasing Vimpat doses to control.

After skipping a couple of infusions in light of brain edema, she got more opdivo about a week or so ago, and all those symptoms got worse again after about 48 hours post-infusion.  MRI then showed edema similar to to the last MRI, but I'm quite sure edema had improved then worsened again.

So we're out of the study.

Trying to interpret the pattern of edema (all L-sided) is challenging.  It's possible the edema is from nivolumab doing it's job, killing off glioma cells in the left-side of the brain that hasn't showed up on any MRI.  But I don't think so.  I suspect she's having an auto-immune generalized brain effect, and that the edema is all L-sided because the radiation mostly impaired the blood-brain barrier throughout the left brain, allowing higher levels of the nivolumab antibody in all the tissues of the L brain.  It's impossible to know for sure, though.

Possibly, in retrospect, a lesson here might be that nivolumab should be started after the conclusion of radiation, and not concurrently.  Possibly a dose lower then 3mg/kq q 2 weeks would be better.  Nobody will know for sure until there's a lot more research and experience.

For the time being, there's no definite residual tumor tissue at all.  Realistically, she's rather likely to have recurrence at some point in the future.  So we're scoping out other clinical trials to pursue if/when that happens.

At the moment, we're interested in:
"CAR T Cell Receptor Immunotherapy Targeting EGFRvIII for Patients With Malignant Gliomas Expressing EGFRvIII"

This is, in part, because NIH/NCI is close to us in Maryland.  We're not yet sure her tumor does express EGFR, but we're pursuing that question.  We're also looking for other promising trials applicable to first recurrence after experimental nivolumab tx, even if geographically distant.  Suggestions welcome.  With any luck, we may have a lot of time before we need to enroll in another study.  Extensive cocktail continues.

Best wishes to the whole community,

stevemdfp at gmail dot com.

Wednesday, 2 November 2016

Brain Cancer NO's in Seattle area

We are loosing our NO, Dr. Mrugala at UW in Seattle.  We have used Dr. Benkers at Swedish as a 2nd opinion NO.  Does anyone have any recommendations regarding Brain Cancer NO's in the greater Seattle area?

Brand Choices

Hi everyone,

Does anyone have good experience with certain brands of Shark Liver Oil? Trying to increase platelet counts for TMZ...

Thank you!

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)