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.