Sunday, 14 October 2018

Second recurrence-- what next?

Hi all,
My husband is being treated for his second GBM relapse. He's receiving irinotecan and Avastin at the moment and his last two MRIs have been stable, interpreted as radiation necrosis. The tumor size hasn't changed at all (close to 4cm in diameter) and he's experiencing neuropathy on his right side, speech difficulties and major brain fog on some days, but overall doing okay. In fact, he has improved significantly since July, when he could barely form sentences, was losing function of his right side and was very sensitive to noise and light. Now he's going on daily walks, can spend time around our rambunctious kids, and his speech is much better-- we are feeling very grateful.

I'm considering adding to his cocktail but I'm not sure what to add and what we should prioritize when talking to his doctor. Here's what I'm considering, I'd be open to any suggestions beyond this as well. His tumor is MGMT-methylated and IDH1-mutant.

-Chloroquine-- Is this something we would have to source on our own? And if so, is it still not available in the U.S.? Has anyone purchased from the vendor in Canada?

-Mebendazole-- What is the recommended dosage for this? Is it potentially more effective than chloroquine?

-PARP inhibitor-- Is there off-label use approved with olaparib in the U.S.? And can this be used with his current treatment?

-Disulfiram- Is this potentially a bad idea if he's already experiencing neuropathy?

-Sodium phenylbutrate-- I haven't read too much about this one other than a couple of successful case reports. I'm assuming this is something we'd have to get his doctor to prescribe but I'm not sure if it's worth pursuing.

-Sativex (or similar)- Where is this available? And what is the recommended dosage?

I think I'm most interested in introducing mebendazole, disulfiram, Sativex and a PARP inhibitor, if possible. Interested to hear others' experiences with any of these.This blog/community is an excellent resource-- thank you in advance!


Friday, 12 October 2018

Bevacizumab: Is the lower the better for glioblastoma patients in progression?

A very interesting study confirming previous reports on the possibility of using low doses of bevacizumab. A dose of 1 mg / kg / 2 weeks looks very strange. However, to the surprise, the authors report a similar effect with other doses and less toxicity! Your opinion?


From September 2013 to August 2016, we recruited patients with progressive glioblastoma, whatever the previous treatments. We compared a routine control group (CG) of ten mg/kg, to a low dose group (LDG) composed of 5 subgroups: G5: five mg/kg, G4: four mg/kg, G3: three mg/kg, G2: two mg/kg, G1: one mg/kg; each patient was treated with the same dose every two weeks.


Fifty-three patients were treated: 20 women and 33 men, 24 in the CG and 29 in the LDG. The median age at diagnosis was 62 years [35.0-77.0]. No statistical difference was found in overall survival either for the CG or the LDG (P=0.086) or among groups (P=0.251), with even a trend toward improvement for LDG: 62 weeks [20-145] versus 73 weeks [18-178]. The median progression free survival was comparable: 19.5 weeks [6.0-54.0] for the CG and 15.0 weeks [0.0-134.0] for the LDG (P=0.221). Bevacizumab was stopped either due to progression (45.1%) or toxicity (52.9%), without significant differences between doses but maybe less toxicities in the LDG (16.7% for toxicity in G1).


Use of bevacizumab at progression at lower than usual doses seems to give the same results as the standard dose without giving additional toxicity.

Thursday, 11 October 2018

Help Needed !!

Dear Friends

I am here looking for advice for my wife.. My wife at age 34, is diagnosed with GBM4 on August 25, 2018. I have no clue where to start with our story but thought adding some details may help to comment and guide us better.

When my wife was diagnosed, the doctor at Vanderbilt university hospital in Nashville said, they could not operate the tumor because it is spread a lot and had multiple lesions and they could see some rupture and blood. By the time, they did biopsy.. she already had her left side paralyzed. After staying for 15 days in ICU.. We were discharged from hospital with tapering dose on DEX and within 48 hours we were back in Emergency room with another seizure and they have to put her on ventilator .. after another 15 days in ICU she was little stable and currently we are back home and living everyday as a new day.

Meanwhile she got 10 days of radiation (whole brain), The doctors choose 10 days compare to standard 6 weeks as they were afraid about swelling from radiation. On 5th day of radiation.. they also started Chemotherapy with Temodar. Now she is on second cycle of Temodar with higher dose.

After Radiation and Chemo .. the things looked little better .. she has some movement in left side .. I would say she will score 1 or 2 out of 5 in neuro-exam. She is still confused (high dose of DEX) but at least speaking and is thoughtful.

Currently she is on  -

NO - Prescribed
Dexamethasone  4 mg 4 times
Keppra 1500 mg 2 times
Multi Vitamin 1 time
Vitamin B1 1 time
Temodar 200 mg 5 days
Zofran As needed
Ruta-G 2 drops 2 times
Cal-Phos 3X 2 times
Curcumin ~3 gm daily
Haridra ~1 gm daily
Boswellia ~ 1.5 gm daily
Vitamin E oil ~10 drops daily
Holy Basil ~ 10 leaves daily
Melatonin  20 mg 1 time

I would appreciate if  you can suggest some repurposed medication which can be added to this list.  

Her lab reports are as follow 

Integrated Diagnosis:

Histological Classification: Glioblastoma
WHO Grade: IV
Molecular Information: IDH wild type, MGMT methylated, 10q deleted, 17p non-deleted

Positive for MGMT promoter methylation.

LOH 10q: Detected (PCR)
LOH 17p: Not detected (PCR)
IDH1: Mutations not detected (PCR)
IDH2: Mutations not detected (PCR)
BRAF V600E: Mutation not detected (PCR)
MGMT: Gene Methylation DETECTED (Pyroseq )
D10S215 0.31 Detected
D10S541 N/A Not Informative
D10S209 N/A Not Informative
D10S587 0.12 Detected
D17S520 0.95 Not Detected
TP53 0.72 Not Detected
IDH1 (c.315C>T) G105G; rs11554137 Polymorphism Not Detected
IDH1 (c.394C>G) R132G (CGT>GGT) Not Detected
IDH1 (c.394C>A) R132S (CGT>AGT) Not Detected
IDH1 (c.394C>T) R132C (CGT>TGT) Not Detected
IDH1 (c.395G>A) R132H (CGT>CAT) Not Detected
IDH1 (c.395G>T) R132L (CGT>CTT) Not Detected
IDH1 (c.395G>C) R132P (CGT>CCT) Not Detected

IDH2 (c.418C>G) R140G (CGG>GGG) Not Detected
IDH2 (c.418C>T) R140W (CGG>TGG) Not Detected
IDH2 (c.419G>A) R140Q (CGG>CAG) Not Detected
IDH2 (c.419G>T) R140L (CGG>CTG) Not Detected
IDH2 (c.419G>C) R140P (CGG>CCG) Not Detected
IDH2 (c.514A>G) R172G (AGG>GGG) Not Detected
IDH2 (c.514A>T) R172W (AGG>TGG) Not Detected
IDH2 (c.515G>A) R172K (AGG>AAG) Not Detected
IDH2 (c.515G>T) R172M (AGG>ATG) Not Detected
IDH2 (c.515G>C) R172T (AGG>ACG) Not Detected
IDH2 (c.516G>T) R172S (AGG>AGT) Not Detected
IDH2 (c.516G>C) R172S (AGG>AGC) Not Detected
BRAF (c.1799T>A) V600E (GTG>GAG) Not Detected


Maintenance Cocktail

Hi everybody!

My mom just finished 30 sessions of radiation + chemo. I am wondering if someone could recommend drugs/supplements to take between TMZ cycles.

I will update this post with the most current cocktail.

Thank you!

Tuesday, 9 October 2018

Celebrex post-Avastin?

Hi all,

My brother received his first Avastin treatments over the past few months and suffered a brain bleed. After he was stabilized, his NO said we needed to take a break from Avastin and re-evaluate after 1 month. James was also on Xarelto during this Avastin treatment due to a blood clot that formed in his leg. He is no longer taking Xarelto.

James desperately wants to get off of steroids and is beginning to dose down. He's previously done OK dosing down slowly, but I wanted to ask about introducing Celebrex.

I'm concerned that maybe it could be a bad idea due to the brain bleed? The bleed has not fully "absorbed" so it is still present, though it is under control.

Any previous experiences or references would be greatly appreciated.


Monday, 8 October 2018

CareOncology or other docs for cocktail approach?


I am helping my friend find a doctor or consultant to help with the cocktail approach. His local oncologist is open to the cocktail approach, but hasn't worked with the full range of repurposed drugs and supplements.

Has anyone used CareOncology in the U.S.? I'd love to hear about your experiences.

Also, does anyone know of other doctors who consult on the cocktail approach? Appreciate any leads you might have.

Thank you in advance!

Sunday, 7 October 2018

Disulfiram Interactions?

Has anyone had personal experience (or that of a loved one) using rubbing/isopropyl alcohol while on disulfiram? Optune requires the use of 70% rubbing alcohol on a freshly shaven scalp and am concerned about a potential disulfiram reaction. There are numerous warnings about this by the makers of disulfiram, but am hoping to learn about personal experience with this.
Similarly, has anyone used CBD tincture (typically manufactured using alcohol) while on disulfiram? 
Gratitude and healing wishes for all souls using this wonderful forum.

Saturday, 6 October 2018

Combining DCA and metformin

New study called Influence of metformin, sodium dichloroacetate and their combination on the hematological and biochemical blood parameters of rats with gliomas C6 published in Experimental Oncology.  (pubmed abstract)   (PDF download)

 "The administration of DCA did not significantly affect the life span
of rats with C6 glioma"

Average lifespan of rats was increased by 19% with metformin alone

Combination treatment with metformin and DCA increased average lifespan of rats by 50%

"the expressed antitumor effect of combination therapy with DCA and MTF [metformin] was associated with a decrease (p < 0.05) in glucose and lactate levels in blood plasma of rats with C6 glioma by 10% and 41.4%, respectively, compared to tumor control."

"Analysis of blood parameters showed that the growth of C6 glioma was accompanied by the development of leukopenia, anemia and thrombocytopenia."

"MTF [metformin] alone and in combination with DCA positively influenced the number of white blood cells and caused complete thrombocytopenia correction, increasing platelet count by more than 200%"

Wednesday, 3 October 2018


Report of Objective Clinical Responses of Cancer Patients to Pharmaceutical-grade Synthetic Cannabidiol.   (PDF download)  (abstract at pubmed)


Clinical responses were seen in 92% of the 119 cases with solid tumours including a reduction in circulating tumour cells in many cases and in other cases, a reduction in tumour size, as shown by repeat scans. No side-effects of any kind were observed when using pharmaceutical grade synthetic cannabidiol.

Monday, 1 October 2018

Continuous Bevacizumab Through Multiple Lines of Treatment for Recurrent Glioblastoma. Phase II Trial (TAMIGA).

The results of the study, which lasted from 2013 to 2018, are published.
"A Comparison of Continuous Bevacizumab (Avastin) Treatment or Placebo in Addition to Lomustine Followed by Standard of Care After Disease Progression in Participants With Glioblastoma"

We assessed the efficacy and safety of bevacizumab (BEV) through multiple lines in patients with recurrent glioblastoma who had progressed after first-line treatment with radiotherapy, temozolomide, and BEV.

TAMIGA (NCT01860638) was a phase II, randomized, double-blind, placebo-controlled, multicenter trial in adult patients with glioblastoma. Following surgery, patients with newly diagnosed glioblastoma received first-line treatment consisting of radiotherapy plus temozolomide and BEV, followed by six cycles of temozolomide and BEV, then BEV monotherapy until disease progression (PD1). Randomization occurred at PD1 (second line), and patients received lomustine (CCNU) plus BEV (CCNU + BEV) or CCNU plus placebo (CCNU + placebo) until further disease progression (PD2). At PD2 (third line), patients continued BEV or placebo with chemotherapy (investigator's choice). The primary endpoint was survival from randomization. Secondary endpoints were progression-free survival in the second and third lines (PFS2 and PFS3) and safety.

Of the 296 patients enrolled, 123 were randomized at PD1 (CCNU + BEV, n = 61; CCNU + placebo, n = 62). The study was terminated prematurely because of the high drop-out rate during first-line treatment, implying underpowered inferential testing. The proportion of patients receiving corticosteroids at randomization was similar (BEV 33%, placebo 31%). For the CCNU + BEV and CCNU + placebo groups, respectively, median survival from randomization was 6.4 versus 5.5 months (stratified hazard ratio [HR], 1.04; 95% confidence interval [CI], 0.69-1.59), median PFS2 was 2.3 versus 1.8 months (stratified HR, 0.70; 95% CI, 0.48-1.00), median PFS3 was 2.0 versus 2.2 months (stratified HR, 0.70; 95% CI, 0.37-1.33), and median time from randomization to a deterioration in health-related quality of life was 1.4 versus 1.3 months (stratified HR, 0.76; 95% CI, 0.52-1.12). The incidence of treatment-related grade 3 to 4 adverse events was 19% (CCNU + BEV) versus 15% (CCNU + placebo).

There was no survival benefit and no detriment observed with continuing BEV through multiple lines in patients with recurrent glioblastoma.

Previous research suggested that there may be value in continuing bevacizumab (BEV) beyond progression through multiple lines of therapy. No survival benefit was observed with the use of BEV through multiple lines in patients with glioblastoma who had progressed after first-line treatment (radiotherapy + temozolomide + BEV). No new safety concerns arose from the use of BEV through multiple lines of therapy.

Sunday, 23 September 2018

Questions about our cocktail and radiation (at 2nd recurrence)

I posted earlier this year, after my partner had his second gross total resection (his first resection was in Jan 2017).  We did pembrolizumab and CCNU along with a relatively small cocktail of supplements (vitamin D, curcumin, PSK, bosellia, melatonin).  We tried Celebrex and my partner immediately developed colitis, which made me gun-shy about introducing more treatments.  At that point his MRIs were improving, anyway, so it seemed better not to introduce new complexity.

Then, in June and July, he had a couple grand mal seizures and his MRIs worsened.  By early August the doctors concluded that there was actively growing tumor, so were officially at second recurrence.  We stopped pembro and CCNU, and began Avastin.  I also finally introduced metformin and simvastatin, apparently without any side effects.

A scan last week was a little worse but not dramatically.  There had been significantly more progression in the 4 weeks between the July and August scans than in the 6 weeks between the August and September scans. 

I’ve gotten our oncologist to agree to let us add telmisartan and mebendazole, although we haven’t started either yet.  My partner still needs 4-6mg dexamethasone daily to control cerebral edema, even with Avastin, and I’m hoping telmisartan will help us reduce that.  I’m still not sure what to think about mebendazole.  I share Stephen W.’s worry that the mega-doses could interfere with other treatments and I’m skeptical of Care Onocology’s profit motive (they patented their 4 drug combo and threaten to sue violators).

We’re also trying to get VAL-083 through expanded access, although that’s taking a while.  My partner is not a good candidate for treatments requiring another surgery, like vaccines.  He lost significant brain function in the second surgery and also suffered major complications from seizures and blood clots.  He's very clear that he does not want a lot of suffering from here on out.

I have two questions for anyone who wants to weigh in:
  1. Is there anything we should strongly consider adding to this cocktail?  My partner’s tumor is MGMT unmethylated and IDH wildtype.  Tempus showed NF1 and RB1 as the only potentially actionable mutations (I've ruled out everolimus after the study indicating it worsened OS).
  2. Our neuro-oncologist had us consult with our radiation oncologist, who recommended a short course (10 treatments) of lower intensity radiation than my partner had last year, when he did the standard Stupp protocol (plus Optune after radiation).  The RO thought it might help slow the growth down a bit and provide a little symptom relief but probably wouldn’t increase life expectancy much (if at all).  We’re really torn about whether to go through with it or not, and I don't know how to gather data on it effectively.  Unfortunately, we need to make the decision fairly quickly.
Thanks in advance for your help.

Saturday, 22 September 2018

Medications and supplements during treatment !

Hi All

My mother was diagnosed about a month and a half ago with GBM the surgery was performed and the tumor was completely removed ,now she treated TMZ and Radiation

I purchased supplements that were taken before starting chemotherapy and radiation, such as resveratrol, green tea, mushrooms, pozzalia, turmeric, omega-3, flaxseed oil, melatonin, broccoli sprouts etc
But  we stopped it during treatment, is it better to stop eating supplements during treatment or take it during treatment??

What do you suggest to take medicines and supplements during (and after) chemotherapy and radiotherapy??
My mother is 49 years old and has no other health problems at all

Thanks in advance


Tuesday, 18 September 2018

Drug Cocktail for Newly Diagnosed GBM

Hi Everyone,

I'm new to the blog and blogging in general. My brother is 3 weeks post op craniotomy for removal of 2cm brain tumor in left frontal lobe - complete resection was not possible but approximately 80% removed. Otherwise Joe is a healthy 35 yo male

Pathology report came back:
Grade IV Glioblastoma, wild type
Negative IDH1/2
Negative MGMT methylation
No amplification of EGFR gene

He will be part of a clinical trial with proton therapy radiation at MGH in Boston.  Joe is gripped by depression but committed to starting treatment - hopefully along with a drug cocktail. I've been helping him research and pull it together. When he starts radiation and chemo in a week or so I would like him to be on below meds / supplements

Valproic Acid1000mg
Chloroquine250mg daily
Celebrex200-400mg daily
Fluoxetine40mg daily 

CBD / THCgradually increasing dose
Boshwella 1000mg
Green Tea
Curcumin1000-2000mg +
Maitake D 100mg
Fish Oil
Turkey Tail - ie PSK 3000mg
Vitamin D35000-10,000 UI
milk thistle 1000-2000mg
Reishi mushroom

This is not a complete outline as I'm using some supplements he purchased and some meds he is already on (valproic acid).  I would love to have any suggestions or thoughts.

I also have some questions for you all (I'm sure the first of many) 

1. How open are neuro oncologist to a cocktail approach? Joe is afraid of asking them about adding anything to the current standard of care 

2. Is it true that unmethylated MGMT tumors are not as responsive to TMZ? Should we ask about a metronomic everyday low dose? What is the current dosing of TMZ in standard of care?

3. Should we look into adding Antabuse, Metformin, or an ACE Inhibitor? 



*my apologies for any typos 

Induction of Mitochondrial Dysfunction and Oxidative Damage by Antibiotic Drug Doxycycline Enhances the Responsiveness of Glioblastoma to Chemotherapy.

Any opinions on this study? Dosage in humans?
Interesting article reflecting on IDH1/2 mutations and treatment targets...


Monday, 17 September 2018


Does anyone have any information on the trial using DNX-2401?  We are trying to decide if the risks outweigh the benefit or vice versa. Its great for the 20% that had extended life but what they won't tell us is how those people were living. Did there side effects continue where even thought they lived three more years they were miserable? If anyone has any information to shed some light on this that would be great. Thank you!

Reviewing my mom's cocktail after 1 year progression free survival

Hi folks/Stephen,

We had my mom's MRI just a week back, and her last MRI showed no growth of the disease, had no choline elevation(in the spectroscopy report) and didn't show perfusion either. :)

She has completed her radiotherapy, 3 cycles of temozolomide and 3 cycles of lomustine+temozolomide. We moved to the Lomustine + Temozolomide protocol because her disease was methylated.

This group, especially Stephan have been extremely supportive so far in this tough journey. I wish to run through you all my mom's cocktail, and wanted to ask specific questions on her cocktail. Would really appreciate your help! My questions on my mom's cocktail are as follows:

1. Should I consider adding anything, or updating anything in the current cocktail?

2. Because my mom's choline elevation has constantly been coming down in the past three MRIs, my oncologist suggests we do three more cycles of lomustine + temozolomide. However, my mom's WBCs never come up beyond 1500 after the chemotherapy. The oncologist supplements with Iron and Folic Acid for WBC support, post which the count reaches 4000, both of which from what I've aware are negative prognostic factors for GBM. He says the effect of the chemo overpowers the negative prognostic factor of Iron/Folic Acid. Do you think that it is the right approach to go about things, or should I consider stopping the chemo and not supplement with Iron/Folic Acid?

Is there anything specific that you have tried and has worked well for your patient for WBC support?

3. Are there any clinical trials/additional treatments that you would suggest doing beyond the current line of treatment that we currently are on? For now, we plan to do three more cycles of chemo along with the supplements mentioned below.

Following are the details from her biopsy

IDH1 and IDH2: Not detected
CHR 1p and CHR 19q: Negative for CHR 1p and CHR 19q codeletion
Methylation: Detected
Ki67 labelling index is 15-20%

Following is her FoundationOne report:

Genomic Alterations Identified
EGFR A289V – subclonal, amplification, EGFRvIII
CDKN2A/B loss
TERT promoter -124C>T

Additional Findings
Microsatellite status MS-Stable
Tumor Mutational Burden TMB-Low; 3 Muts/Mb

Additional Disease-relevant Genes with No Reportable Alterations Identified†

Following is the diet and supplements that my mom is taking:

Diet: Ketogenic Diet/Low Carb high fat diet


SupplementCap count
Boswellia Serratta 500 mg8
Keppra 500 mg2
Curcumin + Piperine 1 g4
Longvida 400 mg2
Metformin 500 mg3
Quercetin 865 mg4
Resveratrol 200 mg2
Bromelain 500 mg6
TMG 1 g3
Reishi 1g2
Mebendezole 100 mg for 3 months + Doxycycline 100 mg for 1 month
(We have skipped the statins from the care oncology protocol fearing it might be too heavy on her liver)
Artimisia 1 g2
Ashwagandha 500 mg1
Selinium 200 mcg1
Vitamin A + D + K2 - 5000 IU 1
Molybdenum Glycenate 1g1
Celebrex 200 mg2
Green tea extract 500 mg 40% EGCG2
Marrow Plus 6
Echinisea 500 mg3
Astragalus tea 3g1
Juice from 5g of Ginger1
Garlic 2 cloves3

I look forward to hear from you all!

Sunday, 16 September 2018

Hi everyone, hi Stephen,

what do you think about this study?
It`s little but still very impressive:

All the best,


Saturday, 15 September 2018

When should certain GBM tumor profiles preclude THC use?

I am evaluating whether I should incorporate THC into my cocktail regimen. I have come across some studies showing that some genes expressed in tumors can either negate the anti-cancer effects of THC or even accelerate the proliferation of the cancer because of the THC. This article discusses growth factor midkine (MDK), the anaplastic lymphoma receptor tyrosine kinase (ALK), and epidermal growth factor receptor (EGFR).

Does anyone know how conclusive these studies are on which pathways glioblastomas may proliferate because of THC? More specifically, is anyone aware of any updates since this paper or other research that shows different results? I am EGFR amplified and obviously don't want to pour gasoline on the fire.

Sunday, 9 September 2018

Cocktail for chemoradiation

Hi all,
Thank you so much to Stephen, Ben, and all of you folks for sharing your insights and information as we navigate through this. I had emergency surgery a few weeks ago and was diagnosed with GBM wild type. The tumor was 7 cm, right parietal lobe, full resection, MGMT methylated, IDH1 negative. My pathology report shows high CBL mutation frequency, high TP53, and my PDGFRA mutations and amplification appear frighteningly off the charts, but that's a whole other question :/

I've put together a cocktail for my six-week chemoradiation term, into which I'm eight days. I would appreciate any recommendations on what I might add, remove, revise. Thank you! 
100 mg

400 mg

250 mg

4.5 ml

20 mg

60 mg

1 g

300 mg

Daily Dose
5 g

1 g

5 g

Flaxseed Oil
43 g

Garlic Extract

3 g

200 mg


3 g

120 mg

Milk Thistle
1 g

25 mg


(I'm holding off on antioxidants until after radiation.)

*Noscapine: One of my doctors recommended it. I haven't seen it mentioned here, and I'm wondering if its inclusion is truly beneficial or should be removed.  Here are some links:

Noscapine inhibits tumor growth in TMZ-resistant gliomas

Synergistic suppression of noscapine and conventional chemotherapeutics on human glioblastoma cell growth

But this thesis contends it's effective on its own for glioma cells but is not synergistic with TMZ. 

I had already been taking this before my diagnosis, and I increased the dose after having read some promising studies.

Anti-tumor effects of progesterone in human glioblastoma multiforme: role of PI3K/Akt/mTOR signaling

Synergistic Effect of Combination Progesterone and Temozolomide on Human Glioblastoma Cells

But then I came across this:

Proliferative and Invasive Effects of Progesterone-Induced Blocking Factor in Human Glioblastoma Cells 

Does the latter study imply it's instead dangerous for me to be on progesterone at all?

Thank you, and strength, peace, and healing to you all!