Sunday, 31 January 2016

New treatment for brain cancer ECCT

An email from Anders had information about a treatment for cancer that was similar to Optune but uses a lower frequency, which Anders says is probably better and is certainly more affordable  around $4500.00 Aus. I think they have had limited success with GBM but more successful with some other brain tumours. Here's the link it's worth a look.

What would you recommend?

My mom is diagnosed with GBM. Init diagnois/surgery dec 1. Follow up surgery Jan 14 (due to delay in radiation schedule due to misscheduling).
She has EGFRv3 and unmethylated GBM and is borderline anemic.

We were planning on putting her on ketogenic diet, fish oil,  turmeric and melatonin. But due to her being borderline anemic we are shying away from fish oil, also from keto because its hard.

Im not really sure what to supplement at this point besides vaccine.

NO is only pushing for Stupp Protocol and possibly Avastin. And is trying her best to get us into the Celldex trial or possibly the CAR-T cell trial.

But as far as supplements we dont have anything. What should we do?

New Study.

Thought this may be interesting. I have not posted previously as I am not computer savy! Hope this works.

Wednesday, 27 January 2016

45 YO daughter diagnosed with Glioblastoma

My daughter Debra was diagnosed with glioblastoma on December 19. The tumor was completely removed and she has regained all movement on her right side. About 2 years ago she was diagnosed with a very rare appendix cancer, which has not returned. The brain cancer is separate & considered unrelated. Debra is in her 5th day of radiation and chemo of TMZ. She lives in Boise, Idaho and getting her treatments at the MISTI.

My other daughter, Brenda, an RN and myself have thoroughly studied the available information on the drug cocktail approach to care. We are trying to put together a basic list of supplements for Debra to take. Both her radiologist oncologist and Neuro Oncologist seem to be supportive of  supplements, with some restrictions. One thing that was mentioned was not to take any anti-oxidants during radiation because they could counteract the radiation. I was just wondering what you have heard and any suggestions you have on the supplements during and after radiation.

We are gathering all of the records to be sent to UCSF for their opinion and to see if she is a candidate for a clinical trial for newly diagnosed patients.
I have been viewing this blog for the last few weeks and now am ready to reach out.

My dear dad passed away.

Dear people,
I wanted to let you know that my dearest father passed away januari 18th, 9 days ago.  Sadly the thyroid reduction treatment And previous treatments did not work for him. He was batteling gbm for a little less then 9 months.. A week before he passed away he was quite stable, meaning his left leg wasn't working and he couldn't walk. But you could have a good conversation with him. His condition changed in 2-3 days drastically. I wish you all the best to keep up the fight. I know my father is in peace now.

Tuesday, 26 January 2016

Some drug/ trial for IDH1 mutant tumors.

Ahmad progression

Dear all,
Mri results: growth in old tumor place..and newly developed lesions in many sites..
I can't breath..
I kept telling myself I don't
know if the cocktail will work..and I am trying to do my best..but I was sure hoping it will work..
We did everything..we brought all medicines and supplements..we even were on Keto diet..
It's God's will ..and I hope he gives me patience..

Monday, 25 January 2016

Valproic Acid, Levetiracetam Do Not Improve Survival in Newly Diagnosed GBM

What was commented as being a certain fact before, now is not anymore

EDIT: as Stephen points out below, the time frame of this study differs from others, so its conclusions can´t be generalized.




Hi all I understand the importance of cox-2 inhibitors for antiangiogenesis but I am having a tuff time trying to buy it here in the uk. Oncologist are in willing to prescribe anything I suggest and I do not want to just buy it from any website.
Has anyone had any success with getting hold of Celebrex?

Sunday, 24 January 2016

What do you think of the scorpion venom.Cuba is open now.

Sorry if this is a stupid question. While back I watched some presentation of the people who work on scorpion venom as a dye for the surgery. So the person was asked why not to use the venom internally to cure the cancer. His response was that it does destroy the tumor but it also destroys the liver or pancreas (something like that). Now I think of it. Well how about putting it in the mouth and not swallowing. Wouldn't that skip the liver since it would go straight to the blood stream ? What is your take on it?


Hello all,

Stephen posted about Glycine at the end of November 2015 on astrocytomaoptions under Exploring strategies for IDH1 mutated gliomas. I'll just paste it here again. Anyway, does anyone have any experience with this supplement? It is fairly cheap and non-toxic, so was maybe anyone thinking about trying it?

Reversing hypersuccinylation

November 28, 2015
A research team at Fudan University, China, published a study [46] in the journal Molecular Cell, demonstrating a novel mechanism for the tumorigenic effects of IDH mutations. In this study, the oncometabolite 2-HG, produced in large quantities by mutant IDH enzymes, was found to competitively inhibit the activity of the citric acid cycle enzyme succinate dehydrogenase (SDH), leading to the buildup of succinate and succinyl-coenzyme A, and the hypersuccinylation of lysine. Lysine is an amino acid component of proteins. IDH1-mutated patient glioma samples were found to have significantly higher levels of succinylated lysine than IDH1 wild-type glioma samples, with the most intense succinylation being localized in mitochondria.
The effects of this mitochondrial hypersuccinylation were then examined. Overexpression of IDH1 R132H mutation in cells led to increased succinylation at succinylation sites in mitochondrial enzymes pyruvate dehydrogenase (PDHA1), succinate dehydrogenase (SDHB) and cytochrome c oxidase. The latter two enzymes are components of the electron transfer chain. Succinylation of these enzymes led to their decreased activity, causing impaired oxidative mitochondrial metabolism. Importantly, IDH1 R132H overexpression induced the accumulation of BCL-2, an anti-apoptotic protein, in the mitochondrial membrane. Reversing hypersuccinylation by genetic manipulations also reversed the apoptosis resistance of the cells.
The researchers then hypothesized that glycine may be able to reverse the hypersuccinylation found in 1DH1 mutant cells, as the condensation of glycine and succinyl-coenzyme A would send the resulting 5-aminolevulinic acid into the heme biosynthesis pathway, leaving fewer succinyl groups available to succinylate proteins. This was indeed found to be the case in vitro. Next, mice were subcutaneously xenografted with HT1080 fibrosarcoma cells, which harbor a naturally-occuring IDH1 R132C mutation. The mice were fed a chow supplemented with 5% glycine. Impressively, tumor weights in the glycine supplemented mice were 67% smaller than the tumors from mice fed the control diet, and succinylation levels were also lower, providing proof of principle of the glycine-supplemented diet.
Note, however, that a glycine concentration of 100 mM was used in vitro, far higher than the ~1 mM that is achievable in serum, even with very high glycine doses. The study did not exclude that tumor growth inhibition may have been primarily due to anti-angiogenic effects, as seen in melanoma mouse studies.
Glycine is an amino acid and neurotransmitter. A summary of the use of glycine as a dietary supplement is found at the website

Saturday, 23 January 2016

Other device instead of TTF

I got this in the email from the yahoo brain tumor mailing list
What do you people think about it. Since ttf is to expensive in europe maybe this can do?

Thursday, 21 January 2016

Jeremy's double vision

Hi Mike,
Just wondering how Jeremy is? Did you manage to find what was causing the double vision, have the headaches resolved?  Alan is having shoulder pain, and random attacks of stomach pain so we have decided to have a drug/supplement holiday for a week. Hope all is well.

MRI revealed new tumor growth despite being on TMZ. Please help! Need some advice on what to do!

 My husband is 33 y.o. and has been battling a reoccurrence since july. His tumor is oligoastrocytoma grade 4 (as of 5 years ago with first tumor biopsy). He has been taking 450-455mg of TMZ since august on the 5/23 schedule. His tumor was huge and has been shrinking since we strated TMZ, metformin, Celebrex (on and off) and a bunch of supplements. However today's MRI Revealed a new tumor growth that is being resistant to TMZ (decembers MRI did not have new spot).
Doctor suggested adding Avastin to the current TMZ dose and schedule of 5/23, or doing Avastin with CCNU, or going to Dana Farber in Boston for clinical trials. We feel a little lost! My husband read a while back that Avastin had a lot of bad side effects, so he is affraid of that (quality of life and at the end not work either), and he is affraid that once he start avastin he is not longer qualified for a lot of clinical trials. So Doctor suggested to try a clinical trial first and then go to avastin if it doesnt work.
What are your opinions? I don't know much about clinical trials and don't even know what questions I should be asking. Do you guys have any suggestions on that and questions I need to ask?
How many of you are taking Avastin? How well are you tolerating it? Can Avastin put cancer into remission?  What other drugs should we use with avastin to synergize its effect on cancer?
Do you recommend clinical trials or just going with avastin and other off label meds?

I really appreciate if you give me some info or advice! Thank you very much for your time!

Brain Tumor Education Course in Seattle - Anyone want to meet before/after?

I'm excited to go to this:
Does anyone want to try and meet up before or after?


Wednesday, 20 January 2016

Drug sensitivity testing?

I am wondering if doing tumor sensitivity testing would be beneficial for glioblastoma. I am wondering if anybody on the blog has done any drug sensitivity testing of the tumor tissue . What things to test for and if test at all. Does the test include vit d response testing or testing for estrogen receptors to check if tamoxifen would work. etc. There reason I am asking is since there is a BBB would it make sense to test since some of the drugs would not cross the bbb anyway.

Monday, 18 January 2016

Hello all
My dad is into his 4th week of radio plus chemo he has up until this stage handled it very well.
We have him on a cocktail approach and he's had little side effects. Tuesday we ran our of cannabis oil (it's illegal where we are in the uk) and couldn't get any more until Saturday.
Since Tuesday he has been getting worse everyday Friday he got sent back into hospital and is quite bad, he has a real issue with sickness I have recently added chloroquine phosphate a couple of weeks ago to his cocktail. Initially didn't have any side effects until now.
Has any1 else had issue with sickness and if so is there any advice you would give ?
I just worry that it could be the cocktail making him sick
Many thanks

Saturday, 16 January 2016

What to do with that tumor tissue in the bank.

We have a tumor tissue and it is preserved alive. I am thinking what should we do with it now. Unifontis makes vaccine with manipulated whole tumor tissue and they don't perform leukapheresis.  Iozk makes dendritic cell vaccine with it and adds newcastle virus to it.  Dr. Nesselhuts dendritic cell vaccine is so much cheaper. I am wondering how all those compare.

Friday, 15 January 2016

Tell Joe Biden your cancer story

As part of the "Moonshot" to cure cancer, the White House is asking people affected by cancer to share their stories with Vice President Joe Biden.

Here is the link:

Thursday, 14 January 2016

Early detection -chance for cure?

Tuesday, 12 January 2016

Interesting Speech and Presentation

Dr. Linda Liau - Immunotherapy of Glioblastoma.  Very interesting and worthwhile for GBM patients to view in my opinion.

Monday, 11 January 2016

Meds/Supplements/Food/Exercise, etc. The Bitch/Vent Section

This blog has been, at least for me, so affirming. Trying to solve a problem, trying to make our loved ones well, or at least, extend the expiration date. Here's my question, as I count pills and put them into their daily pill box for the week, and then I separate a different grouping of pills, those for morning from the afternoon pills, especially those that must be had with food, how do you do it? I don't mean, how do you do it every single day, that I don't mind. This blog is filled with amazing fighters, I'm a fighter. What I mean is, when the person you love, just doesn't want to take all of those pills, or eat when they don't feel like eating, to exercise when they just want to sleep all of the time. My husband eats barely 500-1000 cal a day these days, he just doesn't have the taste buds and quickly reaches satiety. It is heartbreaking to see fight is no longer there.

Just to back up a bit, my husband Greg is 61, otherwise healthy, a writer, a drummer, funny, and smart. He was diagnosed May 1, 2015 with GBM, non-operable. His MGMT is methylated. He just completed his 6th cycle of Temodar, 6 more to go if he decides to continue. He last MRI continues to show about a 10% reduction in tumor size, and it has held steady for a couple of months.

So I put it out there, when the tumor has taken that part of them that fights, how do you manage? How do you cajole them to do what they don't want to do? Sadly he feels like he is living only for the next chemo treatment, or days are spent waiting for the next pill? Yes, we do try to do things, visit friends/family, travel, etc. OK, that's it, thank you for allowing me to vent.

Low white blood cell count (leucocytic count)..stop cocktail??

Dear Stephen and everyone
Ahmad did his blood tests before 4th round of ccnu..
The total white blood cell count ( leucocytic count: (pcv,mcg,mcg)) , are all low..the Dr. Advised us to delay this round of ccnu..
My question..should we stop tamoxifen and cocktail  too??

Also his liver functions tests are high:
SGPT (ALT) 113 u/l.       Ref range (0_49)
SGOT (AST) 54.   U/l.                         (0-34)

I am posting as the Dr. Simply told me to stop everything we r anyone has a better advice out of ur experience??

Thank you

Low Dose Naltrexone

Has anyone come across Naltrexone as part of GBM treatment or used it as part of their cocktail? We recently heard about impressive results for a lung cancer sufferer.  Reporting online is inevitably mixed and I have no idea if it can cross the blood brain barrier.  Any views please?
Thanks AM

Update on Dad - 63 y/o male, DX Aug 25th 2015

Hi -

I wanted to provide an update and ask a question.  Overall Dad has been doing much better since starting Avastin in November.  Within weeks he regained strength in his right side (tumor is left) and after a month or so was able to transfer himself in/out of his bed and wheelchair.  This was huge.  His right hand went from not working at all to being able to clench into a fist at I would say 90% of his previous strength.  So overall, very happy with our progress on the cocktail.

Now for my question.  This week Dad seems to be a little worse for wear.  More aphasia than before and needing help getting into/out of bed and his chair.  He's very constipated - I think it's been 5 or maybe 6 days.  We give him milk of magnesia, stool softener, miralax and enemas daily.  Just not kicking in I guess.  Could the constipation be the source of his mini-decline?  Should we reintroduce dexamethasone?  We had tapered off completely around Christmas.  Was on 16mg per day, tapering 2mg per week for several weeks.  Any other considerations?


Sunday, 10 January 2016

Thymosin alpha 1
Adding this drug to chemo =cure for lots of mice


Hi Everyone,

Just wondering if anyone experienced low platelets after the 6 weeks of temodar/RT that led to delayed treatment of the adjuvant cycles of TMZ. My mom's platelets aren't coming back up. Any suggestions or advice would be appreciated!


Chloroquine phosphate source

Submitted by Joan:

The chlorquine phosphate from Northwest Pharmacy and manufactured in India is a foreign subsidiary of Abbott labs so I have more confidence in this product.  But it is the generic.  We just found out that Northwest Pharmacy can send the brand name, Avloclor by Alliance, is manufactured in the United Kingdom and ships from Cederwood Pharmacy in Peterwood Park Croydon UK.  It costs quite a bit more than the generic but you can get it faster.  Northwest Pharmacy failed to tell us we could get the brand name while they were telling it they couldn't get the generic for a couple of months -- so we went without.  When the last time I fussed at them they admitted we could get the brand name because it is available.  

Polio and fed up.

Hello everyone.

I just wanted to clear my thoughts since i can't do elsewhere. My dad got a recurrence a couple months ago. Past two weeks he cant walk anymore, he needs help with everything. He sleeps the whole day. I am so freaking sad and pissed at the same time, because i feel like there is a cure out there: polio. But everything goes so slow.. Trials are taking years. I read that the polio was tested on monkeys with gbm almost 10 years ago. I think everything could go faster we just dont have time.
After first resection 98% my dad could do anything he could even jogging at the beach. He doesn't want to die, he is 59 years old. Yesterday he didn't know how old i was.. He thought me and my twinsister were sixteen but we are 21 years old. I am so extremely sad , he is such a wise man he always knew everything he is a doctor himself.

I feel like if they infected his whole right brain right with Polio after the first surgery when they removed 98% of the tumour he would be cancer-free today.

I hope the thiamazole will work soon, because we need some light in this darrk times. He also takes Valcyte 900 mg a day. I am not sure about DCA , just got it in the mail, but don't see much evidence.

My dad just got his mri results a week ago they said it didn't change much since the last one, but he can't walk anymore... So it's quite confusing.

Sadly We live in the Netherlands and there are ZERO trials here with potential.

Any advice is welcome. Thanks, Lycka.

Please help

Hi all
Firstly I'd like to say thank you to Stephen for accepting me on this page I think it truly amazing all the help and effort this gentlemen is going to too try and help others.
Recently my farther was diagonisted with grade 4 gbm. They have given him 14months.
He has had surgery and they said that his Tumor was the size of a large plum and they managed to remove 80%.
He is in his 3rd week of treatment radio combined with temodar.
I have read much about the cocktail approach an I had him on a supplyments and vitamin cocktail from the work go. However recently I've been reading the importance of off label drugs. So I have started to add drugs that I am able to get my hands on(here in Oxfordshire England ) it is very difficult to get hold of drugs).
So at the moment this is his cocktail :

Vitamin c
Folic acid
Green tea extract
Cannabis oil 1gram a day
Super gla
Milk thistle
Broccoli sprouts
Maitake shiitake reshi
Pomegranate juice
Aloe Vera
Cod liver oil
Barley + wheat grass powder
Garlic oil

I have managed to order Chloroquine from dr fox hoping this arrives soon as I no it is a known radio sensitiser.
And this is the question that I would like to ask the blog.
As my farther is half through his radio I realise the importance of using as many radio sensitives as possible what I worry about that I am not doing enough so if any1 could please reccomend something  that they feel is a must then please let me know.
I had a consultation at an hydro bartic oxygen therapy place (ms therapy) bit they needed an consent form signed our oncologist refused this so now despite to try and buy an oxygen tank and get dad to breathe that in, also printed out some evidence to show that Celebrex and   Disulfiram can help my farther but they to also got dis regarded by our ON.
Why do these people make it so difficult to try and same a loved ones live?
Look forward to all your replys, sorry for the long message.
Many thanks

Saturday, 9 January 2016

Temodar 6 cycles (European protocol) vs 12 cycles (U.S. protocol)

My 61 yr old husband, who was diagnosed May 1, 2015 with GBM, just finished his 6th round of Temodar. The usual protocol in Europe is only 6 rounds, we have a friend who is a neuro-onc in Scotland suggesting that more than 6 is not impactful. Our U.S. doctor and the U.S. protocol is for a full 12 rounds. In this last round of chemo, my husband is having a harder time recovering. He is struggling with short-term memory loss, exhaustion and most frightening is the lack of appetite, weight loss. It seems he is taking longer and longer to recoup from chemo, is it worth it? 

Care with Optune TTF

Hi there, I just want to let everyone know we had a great experience with Optune as a company and receiving financial support in addition to in-home support. They even filed an insurance appeal on our behalf. They really support us to have the best care with least amount of effort.

My mom was on 5 cycles of TMZ and started getting too sick on it so we decided to stop and start Optune instead. She was on Optune as her sole tumor treatment for 2 months (along with keppra 1,000mg and Dex 6mg per day). Her December MRI showed a big tumor progression and she started having lots of seizures, dizziness and headaches (never had seizure activity before). Neuro Onc at UCSF said it was too early to dismiss Optune, and that it needs time to show results.
I have a hard time believing this based on the mechanisms by which it is supposed to work, but that is another conversation.

We started the cocktail approach just before christmas in addition to Optune. I started noticing a correlation between headaches and Optune. This week, after 15 hour break I put on the electrodes and within a half-hour she got a bad headache. I turned off the device. It went away but her headaches are usually brief. I wanted to try again and see if turning it on would have an effect. After an hour or so I turned it back on. Within an hour she had a seizure lasting 13 minutes (I turned off the machine at the beginning of seizing).

The next day I asked her if she felt the machine was doing more harm than good, she said yes. When I asked the Optune rep who visited yesterday if seizures were known side effects, she said that because seizures are symptoms of the disease, it is hard for them to determine what is related to the device.

We have stopped therapy. As this is a new treatment, I wanted to share our story for others.
I think it is a great alternative to drugs but please take care and watch for any side effects.

With love,

Thursday, 7 January 2016

Dairy might be something to skip?

Bellow article is for prostate cancer but it states that dairy as a source of leucine activates the mTOR more than other protein sources.So it seems to me that we want to avoid it for tumors with active mTOR .

Wednesday, 6 January 2016

Upcoming Webinars from the American Brain Tumor Association

Thought you might be interested in knowing of these upcoming events:

I tried to cut and paste the information, but there were formatting issues.

Where doctors buy the newcastle virus from?

I saw on cancer compass another thread that some people were discussing possibility of purchasing oncolytic virus somewhere. I am wondering if you can purchase it anywhere else besides the 3 immunotherapy clinics in Germany. I am wondering where those clinics buy it from.
Travel to Germany is such a pain maybe somebody can just order the virus and get it in the mail or something. Maybe any doctor can order it from somewhere? Then I would do a nice combination with tmz and verapamil etc.

Tuesday, 5 January 2016

New symptom: positional vertigo

Dear all, Ahmad began to experience dizziness as if there is an earthquake in his comes with nausea..
The Dr. Said positional vertigo and there is no need to worry..
But still I am so worried..has anyone experienced this before?
 He just increased his keppra dose from 2500 to 3000 to better control his seizures..And he'be been on keppra for long time with no side effects..could it be this keppra increase??

I am worried that the tumor may have spread to another location causingbthese symptoms..but our last scan was only 20 days ago..can change happen that quick ??


Sunday, 3 January 2016

3 Bromopyruvate ?
There is some clinic ofering this treatment but they don't say anything about glioblastoma.I am wondering if it can work for it since it is small molecule.

Some more info about it. To bad it does not cross the BBB

Saturday, 2 January 2016

Gbm from egypt Update

Dear all..
I am Sarah wife of Ahmad
I am not a very good follower of this blog as I used to be with the old one as I dnt get email notifications as I did..I know I's a simple issue so pls I give me a tip for that..

I posted Ahmad's cocktail earlier
He is on ccnu we are going to take our fourth round in 10 days..

With the ccnu he is taking:
Verapamil on chemo days

A cocktail so much like what Ben did..
Together with all the common supplements
Every one here is probably taking..
Our state:
We do struggle with our seizures..Ahmad is taking now 3000mg keppra divided twice daily and 1800 mg trileptal also divided..
I can not say that his seizures are fully controlled..a week ago he missed a dose and got 7 seizures in one night..
Right now he can get a really minor seizure just before the time of his medicine sometimes..I hope it gets better..and I have no idea why his seizures are that persistant..

His last MRI showed that the "spot" I sent u about earlier is not growing which is good news but still close monitoring is needed ..

There is also some short term memory problems and sometime problems in the ability of expression But not noticed..

Approaching our 4th round now and he began to feel very weak..he is nauseated all the time and always wants to sleep..this didn't happen before especially that we are away from ccnu last this normal??
If anyone have similar experience pls share..he can not take his cocktail when he is that weak..and nauseated and almost doesn't eat..

Ahmad is also on ketogenic diet..he was doing fine but now with the weakness and nausea I am thinking maybe he stops this diet and follow a less restricted one..and probably add 1500 mg metformin..what do you think?? Can he begin taking metformin while he is still on ketogenic diet??

Thank you all and I really hope you are all okay