Saturday, 27 October 2018

Lomustine/temozolomide combination for my mother

I hope all good and i want to ask you some questions

My mother will finish Radiation and TMZ ( 42 days)  on 29/10  she still have 2 radiation sessions ,she is taking 120 mg of Temodal daily and doctor tell us he will give her month free without Chemo then will doubled TMZ to 240 mg

Her MGMT is Methylated and i am asking doctor for Combination Lomustine & Temodal but he said this is not official and i cant doing it

I am planing to give here Combination without doctor supervision , is it safe to give her the combination?
Also i want to ask when can i give here the combination ? in this free month? Or when she start Chemo 240 mg after 1 month
Her PLT before 3 days 231000

Thanks in advance

Saturday, 20 October 2018

Metronomic, Optune & cocktail?

A friend (48 yr old male, full resection 2 mos ago) has recently completed 6 weeks of RT and TMZ. He has discussed the possibility of metronomic vs. 5-day dose-intense schedule due to unmethylated MGMT status and EGFR overexpression mutation. He has a medical oncologist and a neuro oncologist. The medical oncologist didn't see one way or another would be preferable. The NO is still considering. Per Ben Williams, we know it is "worthy of consideration" to try the medium-dose metronomic schedule for unmethylated, amplified EGFR. I have read the study that seems compelling, but it is not conclusive based on being retrospective and having potential selection bias. Is there any other data or personal experiences on whether if given the choice, one would choose a metronomic schedule early on instead of doing this only at a recurrence for unmethylated EGFR amplied patient? 

Thank you for this great resource. I will include his cocktail in case you have other recommendations or questions. 

Keppra 500/2X
Pepcid 20 mg/2X
Celebrex 200 mg/2X
Atorvastatin 40 mg/2X (will increase to 80)
Mebendazone 100 mg
Valcyte 900 mg/2X
Bosweillic acid 3,000 mg
SBI protect (for GI protection)
Omega fish oil 1250 mg/2X
Coriolis/PSK 4.4 mg
Vit D 5,000 IU
Curcumin 1,000 mg (Seems to cause diarrhea, trying to increase)
Selenium 200 mcg
Magnesium 120 mg
Green tea extract 1,000 mg/2X
Melatonin 20 mg
Ginseng 500 mg
Astragalus 1,500/2X 
Milk thistle
Strict Ketogenic diet

Doctor advised against DCA (says not enough data to support), chloroquine (risk of retinopathy) or CBD oil (short-term memory problems), LDN (doesn't think it is effective)--if anyone wants to comment on these.b
Finally, he is on the fence about Optune if you have any experience with the lifestyle aspect of using it.  Our gratitude and best wishes to all of you.

Friday, 19 October 2018

Study about fat and brain cancer

I found this to be really interesting and am curious to hear others' thoughts. I have not read the whole study yet. It seems this conflicts with the idea that a ketogenic diet could be beneficial, unless I'm not understanding something. Does anyone know of similar studies?

Thursday, 18 October 2018

Cocktail Recommendations with ABT-414?

My husband is about to begin ABT-414 for his first recurrence following RT and 4 mos. of TMZ 5/23. He is methylated, IDH Wild Type, high amplified EGFR and P53 mutated.

Prior to Recurrence he was on:

Keppra 1500 mg 2x/d
Metformin 1000 mg 2x/d
Aspirin 81 mg daily
Boswellia 333 mg 3x's/d
Berberine 250 mg 2x's/d
R-Lipoic Acid 240 mg 2x's/d
TurkeyTail Super Strength Coriolus
Melatonin 20 mg
Hydroxycitrate 500 mg 3x's/d
Shark Liver Oil
Zinc 50 mg 2x's/d (Holding due to diarrhea)
TMZ 5/23
CBD tincture (Stopped because of concern about disulfiram reaction bc manufacturing process utilizes alcohol. Could not tolerate even low dose THC.)

Since Recurrence:

Metronomic TMZ 100 mg daily
Chloroquine 250 mg daily
Celebrex 300 mg 2x's/d
Disulfiram 250 mg twice daily
Captopril 50 mg 2x's/d
Minocycline 50 mg 2x's/d (Holding due to diarrhea)
R-Lipoic Acid
DCA 500 mg
Melatonin 20 mg
Longvida Curcumin 1000 mg 2x's/d (Holding due potential CYP450 inhibition)
(Could not tolerate low dose sertraline due to insomnia/agitation)

His CBC and CMP are completely normal since discontinuing TMZ 5/23.

-What would be a safe and strategic augmentation cocktail to combine with ABT-414?
-Any thoughts on managing the diarrhea and other drugs or supplements to hold? Based on his symptoms and an abdominal X-ray, his PCP feels he has slowed gut motility possibly secondary to Ondansetron and his other meds. She has him on a current regimen of Reglan and Miralax.

Gratitude for all guidance offered!

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.