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.
http://azcannaoil.com/

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.
https://myriamshope.org/about 

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. 

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.

Cheers!
Matias.

Ben Williams - cocktail profile

Ben Williams' treatment summary as it appears on astrocytomaoptions.com.

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 virtualtrials.com.


• 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.

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?

Imaging protocols

Stephen

Do you know much about the efficacy of various MRI protocols?  Specifically Swedish likes to use perfusion studies, UCLA didn’t have much to say about perfusion studies but likes F-DOPA PET ( I realize a PET is not an MRI), MD Anderson seems to like MR Spectroscopy.  Then there is field strength.  Swedish uses a 1.5 Tesla field strength and MD Anderson is 3 Tesla.  I forgot to ask UCLA what they were using.  Any research you know of that suggests one approach is best?  Or is it more likely that each has much to offer and it’s a matter of preference with each institution.

By the way, we had our appointment at UCLA.  We were supposed to meet with Dr. Cloughesy but he was busy so we met with Dr. Lai.  We were very impressed.  We will be switching to UCLA from MD Anderson.  We are impressed with MD Anderson as well, they are just not open to other approaches, including Optune.  UCLA is neutral on the cocktail approach, but encouraged us to continue with what we are doing because Jeremy is responding so well. 

Mike

Immunotherapy and chemo combo?/Immunotherapy options.

Anybody knows if combining immunotherapy and chemo is a good idea? Would chemo make immunotherapy less effective? Is it better to do chemo first and immunotherapy after that or would doing both at the same time be ok?

So it seems that for DCVax the surgery would have to be done in one UK hospital ,but for other vaccines it can be done at any hospital and storemytumor.com would pick up the tissue.
They gave me few links for clinics which make vaccines from such frozen tumor tissue and offer other immunotherapy options. I am wondering how those compare.
http://www.unifontis.net/en/therapies/cancer-vaccination/.

http://www.hallwang-clinic.com/en.html

http://www.thechristieclinic.co.uk

http://www.ctcicenter.com/prof-slavin-and-team.htm

http://www.perseuspci.com

Metformin Paper Reccomendation

There are a numerous papers about Metformin's efficacy. I'm a low grade oligodendroglioma (1p/19q deleted, IDH1 mutation, CIC mutation, and TP53 mutation) with stable, yet residual tumor. I've had chemo/radiation. What approach would you Reccomend to presenting to my Dr. To get Metformin as a maintenance/preventative therapy? Papers appreciated.

Grace and peace, Danny

Low carb diet

Hubby has been on a low carb diet since dx. We are lucky enough to live near an certified organic, grass fed dairy so have access to raw milk, cream and butter which we have been eating a lot of as grass fed dairy has higher levels of CLA which has anti cancer effects, and they also taste good :)

  http://www.ncbi.nlm.nih.gov/pubmed/25448730

Yesterday I read somewhere(can't find where) that fat especially when consuming saturated fats that it   metabolizes into    glycerol which causes blood spikes and increased levels of sugar in blood for longer periods.....exactly what we are trying to avoid. Isn't the ketogenic diet mostly fat? Can anybody shed any light on this?
So much to think about
Linda

DCA promotes progression of neuroblastoma tumors

Should I be worried? I know we are dealing with GBM but a drug study that has found that DCA can promote progression in mice with Neuroblastoma tumours raises issues for me. I'm the first to admit, extrapolation can lead me down the garden path.... thoughts anybody.
http://www.ncbi.nlm.nih.gov/pubmed/25973318

Also how do we know if we are fast or slow metabolisers?  Half life of DCA can vary from 1 week to greater then 3 months.
http://www.ncbi.nlm.nih.gov/pubmed/1878534

 Do I just go on  symptoms of neuropathy? I ask this because extended use or high dosage can cause cancer itself.

Just trying to keep our heads above water

Linda

Nicola Goodwin AA3 - my cocktail

Nicola Goodwin - my cocktail.

Anaplastic Astrocytoma diagnosed following large biopsy Feb 2014 followed by 6 weeks radio with temodar then 6 months of temodar. Enhancing part of tumour removed, some low grade remains, I'm in the UK and prescription meds are not easy to obtain, my only medication is 500g Keppra taken twice a day.

My cocktail;

Morning before food;
1000mg longvida curcumin
1200mg reishi mushroom
2000mg Omega 3 Fish Oil
1000mg resveratol
275mg EGCG
75mg Aspirin
250mg Sensoril (Ashwagandha)

Morning after food;
500mg Berberine
50mg Pterostilbene
50mg Zinc
10,000iu Vit D3

Evening before food;
EGCG

Evening after food;
500mg Berberine
50mg Pterostilbene
 20mg melatonin before bed, unbelievably this is illegal in UK




Last 3 scans have been stable, any ideas or thoughts on my cocktail greatly appreciated 😊

Copper and disulfiram in mouse GBM model

A Chinese study just published shows that in a U87 GBM mouse model,  mice given intravenous disulfiram alone had only minor therapeutic benefits, while the mice given intravenous disulfiram plus copper (by stomach) had significantly increased therapeutic benefit, including reduced microvessel density and tumor volume (see figure 8).  I've uploaded this study to the Brain Tumor Library.

There has been considerable debate whether additional copper beyond what is already in the stomach or bloodstream is required to potentiate the anti-cancer effect of disulfiram.  Several mouse studies including the one above have shown that orally delivered copper in mice increases the therapeutic effects of disulfiram.  The original CUSP9 protocol has dosing information on copper gluconate.

Please note that the addition of copper likely also increases the risk of unwanted side-effects such as peripheral neuropathy (see second study below).

Copper improves the anti-angiogenic activity of disulfiram through the EGFR/src/VEGF pathway in gliomas

N,N-Diethyldithiocarbamate Produces Copper Accumulation, Lipid Peroxidation, and Myelin Injury in Rat Peripheral Nerve

Both of these studies may be found in the Library.

Ahmad story and cocktail

Dear all, i am sarah wife of Ahmad 34 years old, Egyptian, diagnosed with gbm last october (secondary tumor, his first was anaplastuc astrocytoma grade 3 in 2008 removed abd treated with radiation only)

When we had our gbm in october the surgery was performed in UK..the onchologist recommended starting with temodar directly as he was concerned with re-irradiation..Ahmad took 6 cycles then he had another recurrence same place.. I was aware of Ben williams' story and did a little research..wanted to introduce cocktail with the temodal..but the Egyptian Onchologist here didnt encourage this at all..so i went with his advice..

After the recurrence and surgery success Ahmad is currently having a radiation treatment, reduced dose 40Gy 20 sessions and we started a cocktail that i want to share:

Melatonine: 10mg, night
celelebrex: 200mg ×3 times a day
vitamine D3: 2mcg morning
cloroquine phosphate: 250mg morning
milk thistle: 380mg× 2times a day
boswellia: 600mg × 7 pills divided through the day with meals
omega 3 : 1g ×3 times a day

Also there is Proton Pump inhibitors:
We started with omeprazole 3days a week high dose (40mg×4) then 3 days regular dose (40mg×2) and the 7th day is off..this protocol was advised by Anders (i hope i got it right from him) based on research of a professor:Stefano Fais,

and shoud be rotating each month a different PPI: omeprazole, lansoprasole and esomeprasole

The boswellia dosage is quite high as Ahmad didnt want to take any steroids during radiation..he just took one shot at the first day i dnt renember the name of the steroid nor the dosage (but it is the one commonly used) ..then after 2 weeks of radiation he experienced 2 seizures so we went to the neurologist who adjusted the keppra and trileptal dosages slightly and gave him another single shot of steroids..(but also do not remember the name)

Anyways he is fine now..abd we are almost ending our third week of radiation..there is still one to go..

i didnt add any supplements to the cocktail during radiation i fear there might be a contradiction of the supplements with it..

No side effects till now..the melatonin made him sleepy at first but niw he is used to it abd we r planning to raise the dose to 20 mg.. we are also going to increase the milk thistle dose

After radiation i think we will wait 3 weeks then start the chemo cocktail wich will be mainly CCNU and tamoxifen like Ben did..but i still cant get the CCNU..as it is not available in Egypt..

We also started a ketogenic diet..and we bought DCA..but still did not use it as we r concerened with the interaction with caffein..

will post the chemo cocktail when we start it

Sarah

Blood Clots are Common with Brain Tumors

When Chance was recently diagnosed with a blood clot in his upper left leg, he was told to go off all meds and supplements until he could meet with the hematologist. He did so and at the hematology appointment, the doctor told us blood clots are common in brain tumor patients.

We wondered why we hadn't been warned.

In Natural Strategies for Cancer Patients by Russell L. Blaylock, M.D., page 33 states: "Maintaining adequate magnesium levels is especially important in preventing surgical and postsurgical complications. Magnesium is one of those nutrients that seem to have an unlimited list of benefits. In addition to playing a role in more than 300 enzymes, it regulates blood flow, protects brain cells, protects the heart muscle, reduces the risk of cardiac arrhythmia, improves lung function, improves kidney function, and prevents one of the most frightening complications of major surgery: blood clots.

I have used magnesium in my neurosurgical patients for more than fifteen years and have never had a patient develop postoperative blood clots in the legs or lungs."

Of course, magnesium is a blood thinner too, so how much to take could be problematic...

Stephen, any thoughts?

Have you heard of Folaxan?

Dear all,
We just heard of this supplement -- Folaxan manufactured by TERCON lab LLC: http://terconlaboratories.com/. We did a fairly extensive search on it (pubmed, clinicaltrials.gov, dailymed), but did not find any relevant information. Has anyone heard of it? We would very much appreciate your comments/thoughts. I am pasting below the information on its active ingredients, etc.
Thank you!
--Guergana

Composition
Active ingredients:
Crocus sativus 20 mg, Cistus incanus 50 mg Equisetum arvense: 30 mg Glycine 10 mg Aspartic acid: 10 mg, L-serine: 10 mg, L-alanine: 10 mg L-cysteine ??10 mg, L-valine: 10 mg Rhodiola rosea: 40 mg, Rosa centifolia L .: 40 mg Boswellia serrata 30 mg, Trifolium pratense L .: 30 mg of Vitis vinifera 60 mg

Excipients: Gelatin (capsule)

Dosage:  1-3 capsules three times a day. Take the capsules preferably after a meal. The dose should be swallowed with sufficient fluid. Product  FOLAXAN ®   can be used long term.

Undesirable effects:   The product FOLAXAN ®  is very well tolerated, it is not addictive and there are no known side effects or negative effects. There are no known contraindications .

Warning:  Not for children under 3 years of age. A dietary supplement does not replace a varied diet. Keep out of reach of children. Not suitable for pregnant and breastfeeding women.

Preservation:  Please keep the dry at a temperature of 5-25 ° C.

Warning:  Do not exceed the recommended daily dávku.Nepoužívejte after the expiry date stated on the packaging.

Packaging: 30 capsules

www.folaxan.cz

TERCON Laboratories LLC, USA

Working between Doctors

I'm looking for experiences and advice on going to a Primary Dr. rather than my NO for RX. My NO has been serving as my primary but isn't in a position to write off label RX. I'm wanting to get Metformin. Has anyone had luck getting an RX written by another Dr. other than your NO?

Searching the blog

In the top left-hand corner of your screen when looking at the blog, you should see a text box with a magnifying glass.  This allows you to search the blog by keyword, but note that this tool only searches original posts, and not the follow-up comments.

Therefore I'm maintaining an up-to-date list of labels for each post including topics discussed in the comments.  In this way, the label system will be the most useful tool to search the entire blog including the comments.  The list of labels is found in the right side-panel underneath the Blog Archive.

Mayo Clinic Adult Brain Tumor Webinar - August 13, 2015

On Thursday, Aug. 13th at Noon CT, Mayo Clinic will host an interactive webinar on Adult Brain Tumors:  From Diagnosis to Recovery. In this live, interactive webinar, Mayo Clinic neurosurgeon Ian Parney, MD, PhD, and neurologist Alyx Porter, MD, will discuss the diagnosis, management, treatment and recovery associated with adult brain tumors. Topics will include management and treatment options, such as surgery, radiation, chemotherapy and clinical trials, as well as recovery and quality of life.  A question and answer session will follow the presentation.

Here is a link to register for the webinar: http://connect.mayoclinic.org/discussion/live-webinar-adult-brian-tumors-from-diagnosis-to-recovery/

Maybe we can discuss in comments below after the webinar.

-Jude

Home liver enzymes tests.

There was some talk on the beginning of cancercompass thread about at home liver enzymes tests. I am wondering if anybody is doing it or not. I am looking around on the web if there is something like that at all. Since people here take so many drugs it might be something we should think about.

Our story

Hi everyone.
My name is Hyunsun. I live in South Korea with my fiance Minjung. Minjung was diagnosed with GBM this April. The tumor was about 4 cm and located at her brainstem, which made it inoperable.
The original plan was to place a permanent internal shunt, but since her tumor did not stop bleeding she had to spend entire 2 months in ICU before her tumor grew and her condition drastically worsened. At this point, our doctor gave us 2 options: either keep waiting for the bleeding to stop or have the surgery at the risk of a very severe deficiency or even worse, death. Her family and I decided that the latter at least provided some hope since we knew from research that surgical resection is one of the most important factors of long-term survival. Fortunately, our neurosurgeon, who is one of the best here in South Korea, was able to remove about 80% of her tumor. However she is not able to speak and has problems with balancing, both of which are improving. She finished her radiation therapy 4 days ago but due to edema, she's on steroid treatment. We're still waiting for our oncologist to start temodar.

I read all of Ben's articles and his book, talked to Rich and Stephen and got invaluable advice from all of them. I couldn't thank them more.

Based on what I have learned, I figured that it'd be good to have her start taking some of the pills since it's likely that chemo will start very soon.  The list of pharmaceuticals isn't complete yet because we haven't got the lab results. But when we do get it on Monday, I'll be able to do more research and hopefully come up with a more tailored list.

Until then, we want her to start take the ones that helps boost her immune system. We started with 20 mg of melatonin and 6 pills of green tea extracts/day. And we might add garlic and mushroom extracts in a few days as well.

So far, this is what we have for nonprescription supplements

1. green tea extracts
2. Maitake-D mushroom extract
3. Resveratrol
4. Selenium
5. Curcumin/tumeric
6. Omega 3
7. Vitamin D3
8. Vitamin E
9. garlic extract
10. milk thistle extract
11. melatonin

Any thoughts/suggestions on the order in which she takes them?

I'll update the list of prescription drugs once I have all the information about her gene expression, etc.

Best,
Hyunsun





ps. There is also this book that I read, Radical Remission by Dr. Kelly Turner. It lists 9 common key factors among survivors who has experienced medically unexplainable recovery from terminal cancers.
You can find the 9 factors @ this link below
http://www.mindbodygreen.com/0-12996/9-key-factors-affecting-radical-remission-from-cancer.html

I sincerely hope that everyone participating in this forum gets to experience a radical remission.
Let us not lose hope.

Lycka is Back again

Hello Everybody,

I have been off the cocktail forum for a while, because I was busy to arrange a treatment for my dad.

It seems like my dad is now going to Germany to receive dendritic celltherapy, we only need to do some blood tests, so I think we will be there within a month.

My dad did the cocktail medications and supplements for I think 2 months, also during his chemoradiation. But since he is unmethylated he doesn't want to take the chemotherapy anymore and he wants to focus on his immune system.

My dad did not finish his radiation therapy, he took about 23 treatments, so he missed 7 treatments.
His last radiation treatment was about a month ago.

The hospital told my dad that they will start a vaccine trial for recurrent gbm patients, but only for the patients who followed the STUPP protocol.

So we are now unsure what to do, my dad feels fine so he doesn't really want to continue radiation, but we are not sure if he does not finish it if they will deny him to future trials for recurrent GBM.

I saw on clinical trials.gov that the inclusion criteria for a lot of trials is that the patient has followed the stupp regimen, but I don't know how strict they are.
Because in the STUPP protocol says that you need to finish the radiation treatment in 6 weeks, but he has now a break from 4 weeks, so i don't know if that's an issue. Because otherwise there is no point for him to continue..

I hope anyone can answer my question.

Thank you.

Lycka.

Methadone

Dear all,

after several very positive cases of GMB treated with methadone hydrochloride in Germany, even our NOs began to believe in this stuff. It was not easy to get it, but today my husband took his first 5 drops. :)
The idea is to take methadon with metronomic Temodal... 
Other than that, he has a fast deterioration right now... Hope this stops somehow. 

Best,
Katja

New Stuff

Just found an interesting article about Duke doing some molecular tinkering that apparently doubles the efficiency of paclitaxel in other cancers.  Its interesting to see how they take advantage of the tumor's acidic environment to deliver the drug.

http://www.rdmag.com/news/2015/08/molecular-tinkering-doubles-cancer-drugs-efficacy?et_cid=4715965&et_rid=54752377&location=top

-Seth

Temodar schedules

I continue to ask myself how to take temozolomide. Nobody has ever studied temozolomide schedules with all the agents people take here. CUSP9 has a large dose of sertraline and not a high dose of temodar every day. If I added as much sertraline to the hudge dose of temodar on the standard schedule I am worried that there might be some toxicity. My feeling is that taking smaller doses of temodar for longer and adding all the agents would be safer and would kill more cancer cells. Kind of boosting small doses of temodar every day. Here is a study  I found. My brother is getting 2 pills a day for 5 days. I was thinking about taking one pill a day for as long as it lasts. Any comments?

http://neuro-oncology.oxfordjournals.org/content/11/1/69.full

Drugs & supplements effects - NEW IDEA

Hi!  I was thinking that we all could make an XLS file, stating all supplements and drugs we use, and their function regarding GBM.  To get this started, I´m uploading something I´ve done already.  It´s very rudimentary, but it´ll help to get us going. 

Drugs and Supplements (XLS format)

When it says "R:" it means that´s something that Richard Gerber stated.  When it says "S:" they are our dear Stephen´s words :)  The rest is information I gathered around, so it´s not guaranteed to be correct!

Ideally, it´d be great if we could upload this where it could be edited by any of us.  I don´t know if Google Drive does it, any ideas?

Cheers!

Matias.

Comments notifications

If you want to follow the comments of a post by email, select the "notify me" box found underneath the box for leaving comments (check this box before leaving your comment).

If using a Google account, the email notifications might get automatically placed in the "Social" folder, rather than in your inbox.  When in Gmail, scroll down the menu on the left to find the Social folder.

Matias - Good MRI!

Hi everyone!

Just posting this to let you all know that the last MRI, which I did last week, was good!  Perfusion test was perfect, and the MRI is better all around, FLAIR weaker, almost all pure black and no suspicious areas, besides one pesky spot, around 1,5cm, which presents a choline peak on the spectroscopy.

On the first MRI post surgery, there were two spots next to each other.  One vanished over time, and this one just faded a little bit on the MRI, but still shows on the spectroscopy.  In conclusion, that sucker has been there all the time, but never progressed, just faded a bit, going to a grayer color.

Does a choline peak necessarily indicate residual tumoral cells?  For what´ve read that´s the rule, and my neuro didn´t want to give me exact numbers on the possibility.  Do you guys think there still hope that it could be my damaged, but hopefully healthy, healing brain?

Bernadette - Cocktail Profile

Hello All,

When I first joined the Cancer Compass forum, it was very early on (around page 45 or so).  At that time, I wasn't sure how squirrely I would have to be in order to get prescription meds, so I used the pseudonym "Alan" in order to discuss all levels of things.

My name is Kendall, and my now fiance Bernadette was diagnosed with GBM on November 12, 2014 at the age of 26.  She had surgery to remove about 96% of it on November 13, 2014.

Tumor Information:
About the size of a lime
Located in right frontal lobe
IDH mutation (usually mutually exclusive from EGFRvIII mutation, so rather rare)
MGMT methylated
EGFRvIII positive (usually mutually exclusive from IDH mutation, so rather rare)
Giant Cell GBM (maybe around 5% of GBM's are giant cell?)
p53 mutation

Had standard 6 weeks of chemoradiation, and it currently only 5/23 cycles of TMZ.  She weighs about 100 pounds, so take that into consideration when looking at dosages.

We've gone through iterations of her cocktail, and this is what she is currently doing.  I've listed dosages and brands as best as I could.  I've also broken down as to exactly when she takes pills.  Before a meal means it's on an empty stomach.  Before bed also means it's on an empty stomach.  I try to merge this cocktail as seamlessly with her normal life as I can, so to make it easier on her, I take a weekly pill holder (Monday - Sunday), and fill it with a day's worth of pills.  Monday is before breakfast, Tuesday is after breakfast, etc.  She currently does not take anything after lunch (Thursday), so I leave a Zofran in there in case she's feeling nauseous.  I make each batch the night before.  Just my way of keeping things organized so that she doesn't have to bother with things too much.  She knows she needs to take a certain batch of pills at a certain time, and that's all she really has to bother with.

I consider this to be a very fluid cocktail.  We will likely be adding DCA as our next agent, and will be closely following Seth's experience with Macitentan as well.

If you have any questions, please ask!

Kendall

Budwig Diet

Hi all,

Thanks Stephen for the invitation to this blog. I was not aware of this massive 'brain tumour cocktail' thread with all of this useful information on CancerCompass prior to this!

I wanted to ask about people's experiences and the efficacy of the 'Budwig' diet for fighting brain tumours/cancer.

Budwig suggests a number of dietary and lifestyle changes, but the core of the recommendations is the following:
- Mix of flaxseed oils and cottage cheese/quark with a stick blender
- additional freshly grinded flax seeds

The theory (as far as my understanding) is that the Omega 3 linoleic acid in flaxseed oil becomes water-soluble after emulsifying with the sulphur in the cottage cheese/quark, and assists in carrying oxygen through the body, counteracting the hypoxic state that a persons' body is in generally when they have a cancer or tumour.

My wife has an early stage grade III anaplastic glioma and have been trying this diet for a short period of time now. We recently had radiotherapy as well so it is hard to determine whether this diet has had an impact, but at the very least it is not expensive, easy to make and fairly tasty.

Nevertheless, keen to hear thoughts from others, and whether the diet has strong scientific grounding and worth a go.

Thanks.

Amber - cocktail profile

30 year old female. Diagnosed on the 14th of Feb 2015 (hello, St Valentine!)
Tumor in the brain stem pons, operable.

The neopleastic cells are negative for IDH1. All demostrate strong positivity for p53. Normal expression of PTEN. No EGFR overexpression.

The surgery left me with facial palsy, no hearing on the left side and numb right leg (still walking though).

Two post-radiation MRIs showed tumor shrinkage (last one done 7/21). I also had 7 Cyber Knife treatments in addition to regural radiation.

Started my medication cocktail on the 1st of July. Supplements almost right away after the radiation.

Temozolomide 340 mg 5/23

Medications:
Celebrex 200 mg x 2
Chloroquine 150 mg x 1
Valproic acid 50 mg x 1
Metformin 850 mg x 2
Disulfiram on chemo days 150 mg x 2
Sertraline 50 mg x 1
Cimetidine 200 mg x 2

Plan on taking Accutane after I am done with TMZ.

Supplement, per day:
Coriolus 3g
Maitake D-fraction 1200 mg
Reishi 2.5 g
Green tea extract 1450 mg
Selenium 200 mcg
Zinc 50 mg
Curcumin 1500 mg
Melatonin 20 mg
Milk thristle 1000 mg
Resveratrol 150 mg
Lycopene 20 mg
Vit D3 4000-6000 mg
CBD oil
CBD+THC .10 g before bed
Banerji protocol (Ruta, Calcarea Phos., Merc. Viv.)

Sources for chloroquine phosphate

I've asked this question before, but it's worth asking again, as it seems chloroquine phosphate is becoming harder to find in the US.   So where is everyone sourcing their chloroquine?   I've started a new page (along the top menu) for drug and supplement sources.  For chloroquine so far we have Dr. Fox in the UK and Northwest Pharmacy in Canada.  Any other mail-order suppliers that people are using?  Or does your local pharmacy have it?

Ruta 6 - Banerji Protocol

Hi!

Has anyone tried this protocol, or heard about its results?  

At first sight, my impression is that the homeopathic approach is probably not very effective.

Cheers!

Matias.

Where to get drugs/supplements.

I am wondering if there is any way of getting temodar without prescription? I am also suggesting maybe we should make one post with links for all the pharmacies where to buy drugs/supplements.

Mebendazole as an anti-cancer agent

Dear all,

I am wondering if someone here is taking mebendazole?

http://www.ncbi.nlm.nih.gov/pubmed/25594199

There is some preclinical data and also a clinical study ongoing...

https://clinicaltrials.gov/ct2/show/NCT01729260?term=Mebendazole&rank=1

Best,
Katja

Macitentan (Opsumit)

I have serveral concerns in taking my first 30mg dose.  It's usually taken at 10mg every day for a year.  Not on and off at higher doses.  This study made me feel quite a bit better:

http://www.ncbi.nlm.nih.gov/pubmed/23900878

32 healthy subjects took up to 30mg for 10 days without any side effects.

The second concern is that I want to go up to 60mg/day.  This is a link to the prescribing information which mentions going to 600mg and getting liver damage.  It also says there is data on its use with sildenafil. 

http://opsumit.com/splash/pdf/OPSUMIT-Full-Prescribing-Information.pdf

My first day went well at 30mg.  The only side effects are actually positive.  This drug does do a great job at making it easier to breath.  I don't have any problems.  I do walk aggressively every morning and noticed I'm hardly breathing up the hills pushing my 65lb sled.  I think I started getting some chest pains, so I stopped and breathed a little harder.  It went away immediately.  It made me drowsy, but not bad.  I slept well for the first time in weeks.  I'd say it counter-acted the dex nicely in this regard.  We'll see how the higher doses go.  I'm on 40mg now.

-Seth