Monday, 31 August 2015

John cocktail

Full resection on Mar 27th 2015. Tumor is unmethylated TP53, no EGFR, no IDH1. Molecular report suggested mTOR inhibitors like Afinitor or Torisel. PDL1 is moderate. It says Giant Cell Glioblastoma.
During the radiation my brother took some CBD/THC but possible it was bad quality and might not have had any effect. The cocktail was started way after the radiation was over and some ingredients have been taken for about 2 months some have just been added.
I don't know what dosages is he taking since his wife is administering the drugs. First CT scan after radiation showed increased uptake of contrast. They just got PET SCAN results today and they don’t want to open it for another week (how irrational). He took local hyperthermia after the radiation.

chloroquine phosphaste
verapamil took only few days
vit c had infusions of it
egcg during chemo
cbd took some and stopped for now
mitake frakcja b
mashroom psk
genisteina wyciag z soi
selen had infusions of it
zinc infusions
vit b1
milk thistle
copper gluconate
vit b1
copper gluconate

thc started on the end of OCT 2015

Anybody knows about cord blood

I have heard they are using cord blood to treat glioblastoma.  Anybody knows about success rate for this?

Sunday, 30 August 2015

New to GBM. 63 y/o Male. Here's my cocktail base plan. Thoughts?

Hi All -

First let me thank you for this board, for your posts and stories, and for your inspiration in a time of such devastation.  My father was diagnosed with a stage 4 GBM on Tuesday.  It's in his frontal left lobe and impairing speech and some basic memory, but nothing else.  Were getting second opinions on surgical options tomorrow and again hopefully Tuesday.  First NS said no.  I was in shock (diagnosis time) and didn't know enough questions to ask.

I now want him to take everything I can to help.  His vitals, heart, kidneys, liver etc are all excellent. He's very fit, non-smoker/drinker.  He is on board with whatever I suggest and will cooperate.  He is reading Ben William's book but cannot actively participate in boards like this as his brain is impaired. Typing and thinking of words is severely impacted.  My mother is a retired RN and will monitor blood pressure daily and blood glucose should we incorporate DCA or Metformin.  That said, two scientists in my extended family rejected my suggestions and instead pushed the 'clinical trial' route - which I believe benefits the greater good of mankind in the long term but does nothing for the subjects.  It's hard not to be discouraged by their emails of 'concern'.  I believe they would have a different opinion were it their loved one.  I've been following BW and Rich's doses from the cancer compass board as a starting point but unfortunately my background is in IT and not science.  Here's what I want to give dad.  Am I overlooking a drug/supplement that is crucial?  Unfortunately I don't know the MGMT status or IDH1 gene status.  I plan to ask tomorrow.  Any suggested edits?  So far he is tolerating everything I've thrown at him.

- Accutane (13-cis-retin-acid), 160 mg/day, 14 days on, 7 days off    DON'T HAVE YET - How to get in US??

- 220 mg Tamoxifen, 2 weeks before chemo.  DON'T HAVE YET
need aspirin daily and long walks for blood clotting

- Verapamil, 600mg/day  Blocks extrusion pump mechanism at BBB increasing penetration of chemo (BCNU)

- Viagara  60 minute before (BBB helper)  Would this do the same thing as Verapamil?  Any conflicts?

- Verapamil, 600mg/day

CONSTANT (+ during chemo/radiation):
- Brewed Green Tea
- cannabis (TCH + CBD)
- Celebrex (Celecoxib), 200mg/day  (I want to up this to 600.  Will push our Dr)
- Chloroquine Phosphate, 250mg/day  (Dr said no, family member had a script)
- Coriolus versicolor extract PSK/PSP, 3g/day  DON'T HAVE YET - On the way via internet
- Curcumin/tumeric extract: 800mg/day
- Decadrone 2 mg day   (NS prescribed)
- Fermented Papaya Extract, 1000mg/day   DON'T HAVE YET
- Fresh aloe vera (drink/mixed aloe, water, honey),1 cup/day
- Gamma-Linolenic Acid (GLA) Extract, 3g per day
- Green Tea Extract, 4g per day
- Keppra  (NS prescribed.  Not sure dose)
- Maitake-D mushroom extract, 1200mg per day
- Melatonin, 20mg/day
- Omega-3 Fish Oil Extract, 3gm per day
- Omeprazole (NS prescribed, not sure dose)
- Reishi mushroom extract, 2.5g per day
- Resveratrol,  20mg per day
- Selenium, 200mcg per day
- Silibinin extract, 2g/day
- Soy Extract, 5g per day
- Standard multivitamin capsules, time-release
- Tagamet (cimetidine), 800mg/day
- Vitamin D 5000 mg a week (Dr said this was the max. I want to increase to 10,000 a day)

Thanks for any help or encouragement.  I'm incredibly grateful for all of you.

Sertraline and Chloroquine

Steven and others

I am starting to consider what meds/supplements to continue Jeremy on once his TMZ is finished.  Can you think of any reason to keep him on sertraline or chloroquine, from a repurposed drug point of view?

Accutane.. online? How to get in US

Hi, new here. My father was just diagnosed with GBM stage 4 on Tuesday. He's 63. I've started him on many of the Ben W drugs. Chemo can't start for another week + while biopsy heals.

I need help sourcing Accutane. Has anyone bought online or from Mexico? Were in the US and even if I get some myself the I Pledge will slow me down. I feel its an urgent component to his care and would like to start it now as we're pre-chemo. Contemplating a trip to Tijuana next. If anyone has advice there also welcomed.


Omeprazole dose

Steven and others using Omeprazole

I am considering adding omeprazole during TMZ rounds.  The only research I have seen was using omeprazole with DCA and the omeprazole dose was 2 mg/kg which sees high to me.  From Bens information I seem to recall him stating that with Nexium, the lower dose provided better results in one study.  Does anyone know of any research showing an acceptable dose reange for TMZ/omeprazole combination?  I suspect there is none, but we have a diverse group of people here so I thought someone might have some information.

Those that are combining omeprazole with TMZ, what does are you using?  Are you also concurrently using cimetidine?

Thank you for your thoughts!


cocktail information suggestion

I was thinking we can improve the usefulness of the information presented in our published cocktails by including at what point the cocktail was started.  At initial occurrence, at time of recurrence, and at what point on this continuum.  For example, if cocktail was started at time of initial diagnose or was it started many months later, same with recurrence.  People in this conversation are likely joining our group at different time points.  Maybe we can begin to see a trend suggesting a possible failure or success of  the cocktail approach is heavily dependent upon timing.

Lansoprazole dosage.

Is anybody using lansoprazole? If so how are you dosing it?

Friday, 28 August 2015

Green Tea Extract-EGCG-Liver Toxicity

I pay an annual fee to belong to Consumer Lab where some products are tests.  I just received this email that I thought I'd share:
"A large, government-funded study recently found that pills of green tea extract can be safe for many people, but some may experience adverse reactions, including elevated liver enzymes."

"Several U.S. government agencies sponsored a study of the safety of green tea extract given to over 1,000 postmenopausal women at risk for breast cancer. Twice a day for a year, women in the study took 2 capsules with both morning and evening meals, providing a total of 1,315 mg of catechins, of which 843 mg was EGCG(equivalent to about 4 cups of green tea), or a placebo. There was no statistically significant difference in the overall incidence of adverse events between the two groups, but women in the extract group were more likely to experience nausea and skin rashes/allergies and less likely to report diarrhea. In addition, 6.7% of the extract group, but only 0.7% of placebo group, experienced elevations in liver enzymes — a sign of liver injury – and these elevations tended to be greater in the extract group. Enzyme levels returned to normal with discontinuation of the extract in all but one person. The researchers noted that "Though green tea has typically been associated with antioxidant effects, recent evidence has demonstrated a strong pro-oxidant effect of green tea catechins (especially EGCG) that can cause hepatotoxicity when administered in high doses." (Dostal, Food Chem Tox 2015.

The American College of Gastroenterology's clinical guideline for diagnosing and treating drug-induced liver injury, published in 2014, lists green tea extract as one of the most common dietary supplements linked to liver injury and stresses the importance of patients experiencing symptoms of liver dysfunction to inform their doctors of any supplements they may be taking (see the LiverTox Database to search for medications and supplements that may cause liver injury). One of the authors of the guidelines noted that levels of catechins can be over 700 mg in some green tea extract pills and, "This can be particularly dangerous when the pills are taken multiple times a day."
In light of potential liver toxicity, a USP expert committee voted in June 2007 to require the following cautionary statement to appear on the labels for green tea extracts: Caution: Must take with a meal. In rare cases extracts from green tea have been reported to adversely affect the liver. Discontinue use and consult a healthcare practitioner if you have a liver disorder or develop symptoms of liver trouble, such as abdominal pain, dark urine, or jaundice. However, approval of the label requirement was deferred and, in April 2009, the USP announced that the proposed requirement was cancelled. According to a USP spokesperson contacted by, monitoring of adverse event databases from June 2007 through February 2009 showed no additional reports of liver toxicity, but the USP continues to monitor the safety of green tea. However, it may be wise to follow the original proposed guidance to take green tea extract with a meal, as this was given some support from tests on dogs which found that high doses of green tea extract induced lethal toxicity when given without food, but showed no significant toxicity when given with food (Wu, Int J Toxicology 2011.
Green tea contains a small amount of vitamin K, which directly counteracts Coumadin's blood-thinning action; however, enormous quantities of green tea would be necessary to provide a significant amount of vitamin K."

Thursday, 27 August 2015

Joan's son - Cocktail profile

Our Coctail Story

Son had first resection of brain tumor Aug 20, 2015
6 weeks r/t and TMZ
5 day round of TMZ following after several weeks
Recurrence showed on first MRI
2nd resection Jan 26, 2015
Insertion of IVC filter Jan 27, 2015 for plural emoblism
March 2015 Started Infusion Therapy every two weeks (Avastin and Irinotecan)
April started Novocure
April 20, 2015 Gamma Knife Surgery for 2nd recurrence
Next two MRIs stable

our cocktail
Prescribed by NO:
*Metformin 1000 mg 2xdy
*Valproic Acid 250 mg 2xday
*Celebrex 200 mg 2xday
*Keppra 1000 mg 2xday
*Chloroquine Phosphate 250 mg 1xday
*Accutane 40 mg 1xday
*Lovastatin Verapamil 120 mg 3xday
*Visicare 5mg 1xday
*Lovastatin 40 mg 1xevening
*Sertraline 100mg 1xday
*Clonidine Transdermal patch dispenses 0.1mg/day
*D3 5000 u 1xday - prescribed to be used with Accutane
*Melatonin 20 mg 1xnight - Life Ext
*Lovenox 40mg injection for blood clots
*Zinc 220 mg 1xday (we are not taking this high dose and not taking any as
long as we are wondering about the interaction with chloroquine as Mike
brought up for Jeremy)
(Drug interaction concerns for cimetidine and metformin, cimetidine and
verapamil)--any advice would be welcome

Non prescribed by NO - he doesn't know we take these:
Adding DCA as soon as it arrives:
*Longvida Curcumin 500 mg 3xday on Empty Stomach
*Cimetidine 400mg 2xday
*Omepazole 20mg 2xday (except days right around chemo infusion 60 mg 2xday)
*Zinc 50mg 1xday (holding off on now due to concern about it interfering
with the action of chloroquine phosphate-I'm wondering about)
*Complete B Complex Life Extension 2 capsules/day
*Ultra Soy Extract 5 capsules = only 468.75mg of genestein
*Resveratrol with Pterostilbene 100mf 2xday (Life Ext)
*CoQ10 100 mg 1xday (Life Ext)
*JHS Coriolus Super Strength 600mg 6xday (give 3 twice/day on empty stomach)
*Optomized Saffron with Satiereal 2 capsules 2xday (recommended by Life Ext
doc for GBM)
*JHS Reishi Gano 161 hot water/alcohol extract 400mg (give 2caps am and 2
caps pm on empty stomach)
*Mega Green Tea Extract 725mg (give 5 a day on empty stomach) Life Ext
*European Milk Thistle (240mg Silyarin, 90 mg Silybin) give 3 a day - Life
*Super Selenium Complex (200 IU Selenium, 30 IU Vitamin 3) (give 1 capsule
1xday)  Life Ext
*Mega Benfotiamine 250 mg 2xday

Welcome any information you have that might help

Nausea and loss of appetite

Hi everyone
Two weeks ago my 62 year old mom completed her 6 week radiation and TMZ for her gbm right frontal lobe.
She was fine during the treatment however as soon as her treatments completed she has been experiencing nausea and loss of appetite which appears to be getting worse.  She was taking a whole host of supplements but has stopped them because of this.  She is however still taking chloroquine and metformin.
Do we assume this is a result of the TMZ?  It's just odd because why is it hitting her now?  If anyone has any insight I would appreciate the info!



My doctor prescribed Methylphenidate to help with fatigue. I don't really know whether it helps or it is placebo, sometimes I do feel energetic, sometimes not. Anyway, I don't take it every day. What do you think possible interactions could be with our "standard" cocktail?

Wednesday, 26 August 2015

when to start tamoxifen

Dear stephen and everyone,
We are now 1 week post radiation..and we r supposed to start ccnu after another 2 weeks..
i am planning to combine ccnu with tamoxifen..and i read that Ben started tamoxifen 2 weeks prior the chemo..

So I am thinking this means we should start tamoxifen now gradually..
what do u think?? Is it safe to start it now with a small dose??


Should we take chloroquine

I just looked at the new pdf posted by Ben Williams and it states there that addition of it to the standard treatment did not produce any benefit except for tumors with egfr3. So  I am quite confused now if we should take it or not since our tumor is tp53 mutated , might have pten loss but no egfr3.

Reposting on Milk thistle for liver protection

Reposting a discussion from Cancercompass (July 10, 2015, page 213) on milk thistle for liver issues.

  • A: Has anyone had problems with liver while on the cocktail? My blood tests have just come back, Alt Sgpt jumped from 7 to 48 in just 10 days (with reference range 0-32). I googled and it says it shows liver damage. I was on chemo 6/29-7/5 and also started some cocktail meds on the 7/2.
  • M: We have not experienced  elevation in liver enzymes.  If you are not taking a good quality Milk thistle product you might want to consider it.  Milk thistle, in particular the silymarin, is a potent hepatoprotective herb.  Typical dose is 300 mg tid with a product standardized to 80 percent silymarin.  You might want to consider a higer dose initially given your liver enzymes are elevated
  • A: Thank you. I do take milk thistle, 500 mg/day
  • M: I would bump it up to at least the total daily dose of 900 mg (300 mg tid) since that is considered a standard therapeutic dose for liver issues. 
  • AB: Yup we have experienced elevated liver enzymes twice. Once when just on radiation and taking boswellia, curcumin, omeprazole.. then, the kidney and liver both were very high above normal. They said it was acute dehydration.. brought on by a rare reaction to the omeprazole. The liver totally recovered, the kidneys came back to normal, but just barely.
    Yesterday we got our latest blood labs. In just six days, the liver AST and ALT readings went from very goodl to the very top of the normal range. We all need to be aware that these changes can happen very, very quickly..
  • M: ...Anyway, regardless of what the bottle says, take milk thistle three times per day.  That is the standard practice for dosing milk thistle for liver related issues. Of course higher doses once there has been an acute elevation of liver enzymes might prove beneficial.
  • S: Berberine also protects the liver from toxic stress, at least in mice.
  • MA: I´m taking A LOT of things, and my liver has been holding it very well.  I use 500mg berberine bid and 300mg silymarin also bid. Maybe you could bump up the doses a little bit to get in track!

Tuesday, 25 August 2015

Would Nutlin3 be usefull

My molecular report stated that nutlin 3 could be used to improve the action of temodar. Is anybody using it? What do you think about it?

Monday, 24 August 2015

Wokvel (Boswellia serrata extract)

Just wondering if anyone has tried "Wokvel" boswellia.  It is a product of Verdure Sciences, the same company that makes Longvida curcumin.

According to their website:

"Wokvel® Extract is manufactured in Verdure Sciences' hands-free, botanicals-only, ISO-certified, NSF GMP-registered facility. Wokvel® Extract adheres to the strictest standards set by global regulatory organizations, including USP, AOAC, and the state of California. "

"Wokvel® Extract also was shown to be bioavailable in humans, with a single dose of 333mg achieving blood levels of keto-boswellic acid (KBA) shown to address 5-lipoxygenase (3). "

Wokvel Boswellia is available in the brand Progena.

metformin , if you can not find, i will send you.

Hello all,

I'm sorry I did not prompt answer for someone in need and search metformin,
In Romania you can buy without a prescription, so I buy and I want to help who can not buy. and I sending   package,  but necessarily be in the EU, another place i do have trouble with custom.


Anybody taking low dose naltrexone.

So I read on about the low dose naltrexone. I did not see anybody having it in the cocktail. So when would you take it? Do you add it to the mix or how do you incorporate it into the treatment?

Sunday, 23 August 2015

Metformin Dosing

Metformin arriving in a day or two. Wondering what everyone started out on and what you tried to normalize glucose to.

Chloroquine and immune status

Hi All, Alan isn't having chemo but is on f/n Avastin, Chloroquine, Tagamet, Metformin, DCA and Celebrex plus usual supplements and struggles to keep white cell count within normal parameters, usually it's just below baseline. I thought not having chemo for 6 months or so other than a small stint of 20mg TMZ daily for a few weeks which was 4 months ago would see his immune system back to robust self.  We are doing a dc vax privately and have been trying to hedge our bets by not putting all our eggs in one basket, but don't want to do anything that will impede his immune system. Just a reminder Alan is IDH1 negative and unmethylated so trying to cover all bases.
Chloroquine can be an immune suppressant and taken with Tagamet would increase Chloroquine levels in blood.
 I have been thinking of cutting Chloroquine by half but am really at a crossroads as I feel the chloroquine/avastin combo is what is keeping the tumour stable. Alan has been on Avastin for almost 12 months (2 weeks short of).
Does anyone else have trouble with their white cell count? I would like to know how other chloroquine users immune systems are holding up and would appreciate all thoughts and suggestions.

Friday, 21 August 2015

where to source PSK

Does anybody know where I can purchase PSK? I purchase PSP from Mushroom Science but can't find PSK anywhere

Thursday, 20 August 2015

Help / Suggestions

Good evening,

Recently I was diagnosed with a brain tumor after a seizure. The tumor is located in the frontal region, and has the size of a lemon. Doctors say is a low-grade glioma (grade 2). I'm no symptoms and already has two months I was diagnosed.
Neurosurgeons and went to some opinions are different. Some doctors want to just follow biopsy and MRI, others want to do the surgery and do a biopsy after the tumor is removed.
I am in doubt and would welcome suggestions on how to deal with the disease. I do not have accurate information as deletions or mutations, because as I said, I have not done biopsy or surgery.
What are the best supplements or medications to be used ??
I'm afraid to use medications that may increase the grade of the tumor.
What is the best option ?? Surgery?? Or just biopsy and follow resonance ??
I live in Brazil and I have little information updated.
Sorry possible clerical errors, do not speak English and write with the help of google translator.

I look forward suggestions,


Maitake D-fraction sources

I'm closing comments on the pages on the top panel, due to a technical glitch that causes Recent Comments on the sidebar to disappear when comments are posted on those pages.

Anna wrote:

I got lost with the maitake d fraction issue. I bought it from amazon. Is the product below ok or is everybody getting something else? If you are getting the product below then how are you dosing it? Is it 6 tablets per day?

Effect of radiation and chemo on healthy brain tissue

This came out on Science Daily this morning:

Summary: A new study -- the first to examine the effects of combined radiation and chemotherapy on the healthy brain tissue of glioblastoma patients -- reveals not only specific structural changes within patients' brains but also that the effect of cancer therapy on the normal brain appears to be progressive and continues even after radiation therapy has ceased.

This was a study at Massachusetts General Hospital. Read the whole story here:

It's a short article and at the end sums up: "We were surprised to see that these changes -- reduced grey matter volume and ventricular enlargement -- occurred after just a few weeks of treatment and continued to progress even after radiation therapy was completed," says Dietrich. "While this was a small study, these changes affected every patient at least to some degree. Now we need to investigate whether these structural changes correlate with reduced cognitive function and whether neuroprotective strategies might be able to stop the progression of brain volume loss. Establishing novel imaging biomarkers of treatment-associated neurotoxicity -- such as ventricular enlargement, which can be tracked with any MR scanner -- will be a critical step towards developing more selective therapies that are targeted to the tumor and spare normal brain tissue."

Amen to more selective therapies!

Chemo & Low Blood Pressure, Adrenal Crisis? & rCBV MRI

Today when we went in for hubby's MRI, his BP was 89/50, pulse 48!!   Yikes!  His pulse has been abnormally low over the last year but his BP never this low.  When I went back on Cancer Compass, some folks commented about that issue whereby they had adrenal crisis from the Chemo.   All trial doc did was send him for saline IV to see if he was dehydrated.   I called my primary doc and had him order an electrocardiogram.  Think I may need to look into it further.  It does explain why all of a sudden hubby was not himself.

Stephen, any thoughts?

BTW, his MRI was still stable but blood run awful so off the CCNU again til platelets come up!

Orig GBM diagnosis:  Aug 2013
Optune for newly diagnosed:  Jan 2014
NO think Recurrence??:  Jan 2015 - I disagree....I think Necrosis, etc. but since spot has stayed stable, we don't know.  Next MRI will do rCBV/perfusion MRI (Regional Cerebral Blood Volume) to see if we can figure out what spot is.
Either way, we are celebrating 2 yrs of life since original diagnosis where they gave hubby 3-6 mos to live!!   Yeah team!!!

Repurpose other cancer treatments

On tonight's news.
I think all of us here agree this is another way to repurpose.
They call it the "basket" studies.

Wednesday, 19 August 2015

Danny Mercer Maintenance Cocktail

Updated 8-25-15: Here is a brief summary of my profile and my current maintenance cocktail. Feedback would be appreciated.

Diagnosed and sub-total resection Nov 2010. 4cm, right parietal/occipital grade 2 Oligodendroglioma; 1p/19q deleted, IDH1 mutation, CIC mutation, TP53 mutation. Standard radiation protocol and 8 rounds of Temodar. No change in tumor during, after, or since treatment. Makes me wonder if the aggressive approach was worth it.

Keppra: 500mg 2 times daily
Vimpat: 150mg 2 times daily
Metformin: starting with 250mg 1 time daily
Curcumin Longvida: 1000mg 1 time daily
Coriolus Versicolor (40% PSK): 600mg 1 time daily
D3: 5000 IUs 1 time daily
Melatonin: 5mg 1 time daily
Cimetidine: 200mg 1 time daily
Ritalin LA: 40mg 1 time daily (for fatigue)
Low glycemic diet (though not radical about it, just avoid refined sugars and high glycemic fruits)
Celebrex: (still deciding whether to take it)
Electrolytes Awareness: (Sodium, Magnesium, Potassium, Calcium-seem to help with aura seizure activity)

Cannabis Oil

I have been dragging my feet trying to figure out the best avenue for assistance/direction on choosing the right cannabis oil for my hubby.  I know Rick Simpson is popular but I don't like the way it is extracted.  I wanted an organic product that was tested for cannabinoid potency, contaminates, terpenes, etc. and was extracted w/organic grain alcohol.  I finally decided to go with Aunt Zelda's in Bodega Bay, N. Calif.    We had a 1-1/2 hr consult with Mara and Dr. Joe who went over medical history, diet, etc.   I was very surprised at the cost as this oil is not cheap!   Aunt Zelda's has a good reputation.

After more research, I discovered a new source in Orange County, Calif.  The gal who runs it, Diana, lost her mom to GBM so it is very near & dear to her heart.  Her prices are a little cheaper and she does all the same things as Zelda's so I will probably switch for our next batch of THC/CBD. 

For those who are worried about the THC, Dr. Joe recommended supplement Citicoline CDP Choline 250mg that helps take away any “stoned” feeling from the THC. 

Monday, 17 August 2015

Suggestion: comments on the sidebar

Hi Steph!

I was thinking that it´d be a good idea to have the last comments made on the blog on the right sidebar, linking to the post where they were made.  It´ll be much easier to follow interesting comments, without having to suscribe to every single post.  It´s very easy to do in WP, I don´t know about Blogger, but I suppose it shouldn´t be that hard.


Saturday, 15 August 2015

Ben Williams - cocktail profile

    Ben Williams' treatment summary as it appears on
    Ben's tumor was recently determined to be positive for the IDH1 mutation, and positive for MGMT promoter methylation.
    Information compiled from Ben’s book Surviving Terminal Cancer, and from the summary of his story at

    • March 31, 1995. At the age of 50, Ben underwent a subtotal resection of a large (180 cubic centimetre) glioma of the right parietal cortex, and was given an initial diagnosis of anaplastic astrocytoma, which was later upgraded to glioblastoma after a more thorough inspection of the resected tumour tissue. Extensive residual tumour remained post-surgery.
    • Radiation therapy consisted of the standard 55-60 Gy to the tumour area plus 2 cm beyond the tumour boundary.
    • The first MRI post-radiation showed neither shrinkage nor growth of the tumour.
    • June 1995. Two weeks prior to his first round of chemotherapy Ben began taking oral high-dose tamoxifen at a dose of 220mg daily. Tamoxifen treatment was continued until March 1998. Side effects of tamoxifen included blood clots which he treated with Aspirin and long walks.
    • July 1995. First round of intravenous BCNU (carmustine) chemotherapy combined with 600mg per day of verapamil taken during the week surrounding BCNU chemo. The verapamil was intended to block the drug extrusion pump mechanism at the blood-brain barrier, and therefore increase the penetration of BCNU past this barrier.
    • The first post-chemotherapy MRI showed a moderate degree of tumour shrinkage.
    • Between the first and second round of chemotherapy, Ben began taking oral Accutane (13-cis retinoic acid) at a dose of 160 mg per day on a two week on/ one week off schedule (he later reduced the dose to 120 mg per day). Accutane was not taken on the days of chemotherapy. Accutane treatment continued until December 1995.
    • Also around this time he added melatonin at 15mg per evening and the immune-boosting mushroom supplement polysaccharide Krestin (PSK) at a dose of 3 grams per day. He continues taking 10mg of melatonin to this day (2014).
    • August 1995. Second chemotherapy cycle, this time consisting of oral procarbazine, oral lomustine (CCNU) and intravenous vincristine. This regimen is known as PCV. Verapamil was again taken to improve the brain uptake of the chemotherapy during the week surrounding oral lomustine treatment.
    • Second post-chemotherapy MRI showed an “enormous” reduction in the residual tumour.
    • Third chemotherapy cycle, PCV.
    • Added oral gamma linolenic acid (GLA) at a dose of 2-2.5 gram GLA daily, consisting of 10 capsules of borage seed oil.
    • Late November. Third post-chemotherapy MRI again showed substantial shrinkage of the residual tumour.
    • Early December. Fourth cycle of chemotherapy consisting of BCNU. Ben decided to switch back to BCNU due to stomach pain caused by procarbazine and neuropathy caused by vincristine.
    • January 1996. Fourth post-chemotherapy MRI. No evidence of residual tumour, first “clean” MRI.
    • Fifth cycle of chemotherapy again consisted of BCNU, followed by another clean MRI.
    • The sixth and last cycle of chemotherapy consisted of PCV with a half-dose of vincristine to increase its tolerability. This was again followed by another clean MRI.
    • Many clean MRIs followed, though Ben continued daily high-dose tamoxifen treatment until March 1998.

What is folinic acid.

There is a clinical trial for gbm with folinic acid. I am wondering what is that. I guess it is not something widely available.

Friday, 14 August 2015

Mutant P53

I was watching the webinar from Mayo and in the case of anaplastic astrocytoma, mutant p53 was associated with a significant increase in OS.  If the p53 protein is a tumor suppressor then why is mutant p53 associated with longer OS?