Friday, 28 April 2017

Kelly Hauf, Cannabis Oil, low grade glioma

Hi again,

I'm wondering if anyone has looked into the Kelly Hauf story? She put a Oligo recurrence into remission with an intense cannabis oil protocol over a period of 8 months. I've been talking with her via Facebook and her story really seems legit. Her surgeon was Mitchel Berger and she also worked with Dr. Butowski who advises Cheryl Boyle on cannabis use too.

I don't have a specific question really. Just wondering about your thoughts on her story.

Thursday, 27 April 2017

GBM suck up cholesterol

Any thoughts/further info on this method?

Wednesday, 26 April 2017

ERC1671 + avastin

Hi everyone, it's been awhile since I've been on here.  My husband was diagnosed 6/2016 and we are close to hitting that one year mark.  We were looking forward to it as my husband had been getting weekly infusions of MRZ (marizomib-clinical trial) for 3 weeks out of the month and it was  taking a toll on his arms/veins and he could have used a much needed break.  Unfortunately, after monthly MRI's since December, NO suggested surgery as the spot they had been tracking had doubled since the last MRI and was ~14mm.

Up to now, my husband has been doing great and people often comment on how they can't even tell that he is battling brain cancer.  The only issues he had was headaches (which never really stopped) and fatigue.  However, he still continued to work every day and come home to help me with the kids. He even got discharged from hospital after 2 days and looks great!

The pathology report came back and we were hoping that the abnormality was just necrosis, but it's now confirmed that it's indeed recurrence.  I guess the bright side is is that he can now do immunotherapy.  I was wanting him to enter the dcvax clinical trial, but apparently it's closed.  The only thing available for him at his treatment center (uc irvine) is ERC1671 in combination of avastin. Has anyone had any experience with this or can offer any feedback??  Thank you!

Tuesday, 25 April 2017

Navigating the Brain Tumor Maze with Professor Rajiv Khanna

This will be particularly interesting for patients in Australia and much of the discussion is about CMV-directed T-cell therapy being developed there in Brisbane.  The discussion turns to GBM at minute 25:25 of the podcast.  Click here for the link.

Sildenafil during Chemo

PDE5 inhibitors have been studied some and discussed by the group in regards to both the short term potential for BBB opening and thus allowing higher doses of chemo drugs into tumors, and also for their impact on immune suppressor cell regulation with longer term supplementation.

I've been trying understand the applicability of Sildenafil specifically for low grade tumors which inherently have minimally if any disruption of the blood brain barrier.  

I have not been able to find much more than a few decent studies. 2 of them are one AstrocytomaOptions:
and one other good one I found was:

Here on btcoctails its referenced in the range of 20-40mg total dose per day, but this and a few other studies showed 50mg per kg dosing in rat models which is maybe 500x higher.  But I haven't found plasma concentration info to actually map it to human dosing.  The closest I found was pharmocokinetic comparisons listing equivalent half lives between rat and human and coming up with the half life for humans being about 4x longer than in rats.  That was useful because it indicates that dose timing should be stretched out to match Tmax of sildenafil with Tmax of chemo.  But actual dosage that would be sensible and safe I haven't been able to figure out.

So does anyone have input on tying it with an actual chemo rounds or recommendations on a sensible dosage?


Monday, 24 April 2017

Boswellia capsules

Reposted for Dominique

Is there any boswellia serrata tablet that can be crushed? Or a capsule that can be opened up so its contents dissolve in water? I've only come across soft gel capsules which can't be broken up. I can't find any syrup either. 

ACP-196 (Acalabrutinib) - BTK Inhibitor

Has anyone had experience with this trial drug for glioblastoma?  My wife was just diagnosed with second recurrence and this trial may become an option soon. She is grade 4 GBM for 20 months now. Has had two surgeries, radiation, temozolomide. She is MGMT negative and IDH-wild. She was set to start next cycle of maintenance Temozolomide when we got the MRI results. We have to make a new chemo treatment decision as soon as possible. Thank you for anyone who has had any experience with ACP-196.

Sunday, 23 April 2017

Dichloroacetate (DCA) for EGFRvIII positive glioma/glioblastoma

Metabolic targeting of EGFRvIII/PDK1 axis in temozolomide resistant glioblastoma

"Immunocytochemistry experiments conducted on EGFRvIIIR cells revealed intense co-localization of PDK1 and EGFRvIII suggesting that PDK1 function is especially relevant for targeting the EGFRvIIIR-dependent GBMs."

"Mouse GBM xenografts tumor cells exhibited heterogeneous labeling of PDK1/EGFRvIII, with positive areas of staining detected alongside negative ones and the DCA treated tumors showed with very low PDK1/EGFRvIII (Figure 6C). Survival curves plotted revealed that DCA treatment increased the survival rate by more than 5 weeks in EGFRvIII treated mice and 3 weeks in EGFRvIIIR treated mice."

Sonodynamic therapy?

Current status and future perspectives of sonodynamic therapy in glioma treatment.

"Sonodynamic therapy is a developing cancer treatment that uses ultrasound combined with a sonosensitizer to synergistically kill tumor cells, and has provided impressive results in both in vitro and in vivo studies."

This is a therapy I'm pretty much completely unfamiliar with, and I'll be reading about it for the first time here.

Optune simultaneous with radiation?

The effect of Optune™ Tumor Treating Fields transducer arrays on skin radiation dose during radiotherapy

I'm uploading this study to the Library, Optune folder

Saturday, 22 April 2017

Free medicine

A GBM caregiver in the USA has kindly offered an approximately one month supply of the following meds, which he no longer needs.  If interested, I'll connect you with him by email:

CBD hemp derived oil
organo-PSP mushroom extract
EGCg green tea extract
GLA borage seed oil
shark liver oil
Natcell thymus spray
C3 curcumin complex

Friday, 21 April 2017

Questions about Celebrex and Tamoxifen


I am new to agents of GBM. I have following questions

1) Is it necessary or beneficial to take Celebrex in the periods between chemotherapy(TMZ) cycles?

2) We also want to add Tamoxifen to my mother's cocktail list, But we are not sure if it will be effective.

3)One study article tells me that adding folic acid will be helpful to change MGMT from unmethylated status to methylated status, Is that correct?

It would be greatly appreciated if you could share your knowledge or information about these questions.

Stephen, Would you like to help me?

Best Regards
James Zhou

All -

Been following for some time now.  My dad (age 62) was dx in November of this year; methylated but wasn't able to do more than a couple of weeks of TMZ due to platelets; tumor is growing.  We're in contact with Dr. Clovis from Brazil to obtain perillyl alcohol for him but, he needs to ship the POH to a lab or pharmacy and we're striking out everywhere on that.  Does anyone happen to know of a place in Wisconsin, Northern Illinois or DC that's done this for someone before or have any tips on how to find a place that will do this?  Everyone we've reached out to seems entirely bewildered by the request.  Thanks so much for your help!

Thursday, 20 April 2017

Agents for MGMT Unmethylated, PTEN Mutation, and PDGFRA Amplificayion


My mother got the GBM surgery on Feb 6 this year. She is MGMT unmethylated, PTEN mutation, and PDGFRA amplification.

Does any one know effective agents for treating these disorders or symptoms?

James Zhou

Wednesday, 19 April 2017

Oligo 2 meeting with Patrick Wen


I met with my NO Dr. Patrick Wen who is director of Dana Farber NO department yesterday. While I 'm stilling awaiting surgery, and therefore pathology, Dr. Wen feels my tumour is most likely an Oligo 2. It is 3cm in left left frontal lobe. I'm 35.

Dr. Wen told me most of these will recur around 10 years (for this location, size, my age, and depending on resection, etc). He also said he believes it's not unrealistic to think that by then there'll be an effective therapy to stop IDH mutant tumours from growing, essentially turning it into a chronic condition. He has a low grade patient (or more) who he was meeting with before me who has been on and IDH inhibitor for a year and a half now. Those seemed to be most promising to him.  He also mentioned PARP inhibitors and a number of other promising agents. He named about 6, including demethylating agents which seemed like a new idea.

I thought I'd share, because it was really helpful to me. He is very optimistic. He said that all of NO is focused on this mutation right now.

I know that's not useful to others without the mutation. Sorry.

I also thought I'd share his video addressing the recent WHO reclassification of these tumours. Most people on here  probably know this but on other blogs it seems a lot of people do not. Their type of tumour may have been essentially misdiagnosed all along.

It's my understanding that there is no longer a grey area. You must have co-deletions and IDH mutation to have an Oligo. Without the co-deletions it's an Astrocytoma and without IDH mutation it's a glioblastoma. I often see things that read "80% of Oligos have co-deletions (or IDH mutation)" but you can no longer be diagnosed with an Oligo if it doesn't have these characteristics. Grading is then related to not yet malignant (low grade) or malignant (high grade). I also believe they can lose their co-deletions, progressing to and Astrocytoma but are not likely to lose the IDH mutation. Maybe Stephen, or others, will be gracious enough to let me know if I have this correct.

I'm curious to know how likely Pligos are to lose their co-deletions upon first recurrence. I'm not sure this information is available.


Tuesday, 18 April 2017


Promoting oligodendroglial-oriented differentiation of glioma stem cell: A repurposing of quetiapine for the treatment of malignant glioma

(click here for link to Oncotarget study)

Anders Ferry gofundme page

"Told to go home and make the most of his time left, yet again, Anders is not giving up on life, and his young family. He has worked with a famous neuro-oncologist in Germany to put together an aggressive immunotherapy cocktail, once again volunteering as a human guinea pig. After one cycle Anders is showing remarkable improvement, and the idea of having to stop due to financial problems is unthinkable."

Left over meds

Hi all
Hope all is well.
I have some left over medication from when we was trying the repurposed approuach with my dad sadly my dad passed last august and i was wondering considering that stpehen helped me track down and others on this page helped me locate certain meds if any one would be intrested.
I have

Saturday, 15 April 2017

Glutamate, ROS and Endocannabinoids

At 7:40 in this video: he talks about how endocannabinoids block neurotransmitters such as glutamate. You can't see the slides which might make it more helpful but can anyone relate this is the usefulness of cannabis, especially as it relates to IDH1 mutated tumors?

I'm also trying to make sense of how ROS is thought to be related to glutamate? I thought I read that glutamate in IDH mutated tumors stops the cells from being overwhelmed by an influx of ROS and so that is why they are so glutamate hungry.

So my next thought is could a combination of cannabis and high dose vitamin c infusions, which is thought to also overwhelm the cells with ROS, be beneficial.

I have no idea if any of this makes sense. It's just overlap I'm seeing and so I thought I'd put it out there.


Breast milk

Thoughts? Further informations?

Thank you.

Friday, 14 April 2017

On Avastin/TMZ, but looking to future - Abemaciclib potential or DCVax-L/nivolumab therapy

Hi all,

My Dad's story/timeline/cocktail can be seen here:

He is MGMT methylated, not IDH1 mutated, positive for 1p Deletion, and after recently receiving our genetic testing Foundation One report back (which was completely covered by our insurance!!) shows a "CDKN2A/B loss" - which leads me to my next few topics

  • We completed standard chemo-radiation in January 2017 (radiation caused inflammation that has us struggling to get him lower than 4mg/day decadron).
  • Has finished (3) rounds of TMZ since.
  • His latest Image (March 2017) showed increased inflammation to the point where our NO at UCSF could not really see much, but it was clear the TMZ was not decreasing the tumor size.
  • A week ago on April 4th 2017 - My dad received his first Avastin infusion. The thought here is to use the Avastin in short term bursts to not only help with inflammation (lowering decadron dosage), but also clearing up the image for the NO to make a better gameplan moving forward. I want to make sure we are not going to stay on Avastin long enough for the tumor to find new pathways (become "immune") as you see happens so often. Any thoughts on this stradegy?
  • Our next image/consultation at UCSF is in a week (4/17/17) to see whether the Avastin infusion made a difference.
Moving Forward

Option 1 - Is anyone familiar with Abemaciclib? I haven't seen any posts on here about this CDK4/CDK6 inhibitor. I bring this up because our NO was surprised to see our Foundation One report mention his "CDKN2A/B loss". He immediately mentioned Abemaciclib and is looking at potential trials or best case getting it off-label in some way or another.

This drug seems to be used more often in breast cancer, but has not shown any spectacular results as far as I can find. Any thoughts?

Option 2 - DCVax-L/nivolumab therapy - Until the last time we met with our NO this was by far our most exciting find. This Phase II trial is soon to be recruiting out of UCLA 


DCVax has been spoken about on this forum and appears to be showing better results (and more overall information out there than Abemaciclib). Here are the scary parts of the trial:
  • Our NO has said that he has been finding an overwhelming amount of his patients have serious side effect issues with Nivolumab (inflammation being one of them) and he has seen many end there usage. I did find this odd because many on this forum have spoken about it without the negative connotation.
  • To be included in this trial my Dad must get below 2mg/day of steroid use, which I'm worried might not be possible. 
  • He would need to have a recurrence and it would need to be operable which is scary in itself.... meaning all the stars will need to align for us to get accepted.
Let me know if the community out there has any opinions of our potential options and usage of Avastin.

Thank you all for reading and contributing. 

Ari Wangerin
(Oakland, California)

Cimetidine cross the BBB?


My Naturopath would like me to start taking modified citrus pectin before surgery. She says this will make cells more sticky. I was curious to see if this would cross the blood brain barrier and all I could find said no.

Then I made the connection to cimetidine and that there is a similar logic behind its use. My question is, does cimetidine cross the BBB? If not, how can I help to facilitate it crossing the BBB? Would a proton pump inhibitor do this? (Sorry if I've got that wrong, I'm trying to put lots together.) My partner was reading that inhaling products can help them cross the BBB. It seems like if it were that simple, that's how it would be done. But I do recall reading about a drug that is delivered through a nasal spray to help get it across the BBB.


Tuesday, 11 April 2017

Low grade glioma suspected

Hello all,

I'm currently 40 weeks pregnant and about 20 weeks ago had a seizure, resulting in the discovery of a brain mass suspected to be a grade 2 Oligo. I'm working with Dr. Wen at Dana Farber and the plan is to recover from birth, then move forward with surgery, etc.

I'm wondering what advice you'd offer to someone in my situation? Diet, supplements, surgeons, etc?  What off label drugs and treatments should I consider to delay or prevent recurrence? I've read through Ben Williams publications and spoken, via email, with Ben and Rich Gerber. They provided their recommended drug and supplement lists.

I've read about the DCvax-l and see its promise. I'm British and recently learned the only place to likely get it is in London. So I've reached out to them but I'm not sure they're administering it for low grade glioma?

There are also a few clinical trials out of UCSF that I may be eligible for (IMA950, Poly-ICLC with or without Variliumab or Pulsated tumour lysate with Poly-ICLC). Can anyone tell me more about those? I've read Poly ICLC shows promise.

Thank you all for your time and advice.


DCvax-l info for phase 1/2 low grade glioma

Does anyone know the status of these studies? Has any information been released at all? Also, word of a phase 3?

Thank you.

Sunday, 9 April 2017

Optune for Canadians

Unfortunately since the Optune device isn't approved yet here in Canada, our only option would be to drive down to the US to get access.  But even so, without US medical insurance, we still have to pay for it out of pocket, which is ridiculously expensive (about $21,000 per month for the device alone).  I was wondering if any Canadians on here have managed to get a hold of one?  If so, could you please share some tips as to the steps you took to get one, and also if you were able to get any coverage, or did you end up paying out of pocket?  Any help is appreciated.  Thanks!!

Saturday, 8 April 2017

Chloroquine and non-P53, non-EGFR mutant tumors

I know that chloroquine has been discussed to death in this site and the original message board but I couldn't find an answer to my question there and am hoping someone can provide some insight.

My understanding is that chloroquine generally works best for those with EGRF mutations. My wife does not have this.

It's a bit unclear as I came across another post in another site (that I cannot find again) that seemed to say that chloroquine works better for those with a P53 mutation while other posts, particularly Stephen's comment in this post, noted that it works better for those without a P53 mutation. I note that we also have a PTEN loss as well.

Finally, this post noted that Chloroquine provides a "strong antimutagenic effect" but it's unclear if it's universally so or if it's only for those that with the aforementioned mutations.

Question: If someone has both a non-P53 and a non-EGFR mutant tumor, is it worth adding Chloroquine if we're past radiation and chemotherapy? We are currently on Optune and Nivo along with our cocktail.

Followup Questions: For those on chloroquine, has anyone noticed any side-effects beyond the retinopathy issue?

My wife's pill burden is heavy enough so I have to be judicious in what we add. I am most drawn to Chloquine because it's one pill, seems to have few side effects, and is a small pill at that.

Friday, 7 April 2017


"penfluridol treatment inhibited the growth of U87MG tumors by 65% and 72% in subcutaneous and intracranial in vivo glioblastoma tumor models respectively"

Click here for the full study in Oncotarget

Thursday, 6 April 2017

Tocagen Trial News

I saw this posted on the Musella website ( Brain Tumor news blast 5600):

Tocagen wins "Most Successful Early Phase Trial" and "Excellence in Rare Disease Drug Development" awards!         I am proud to say that the Musella Foundation has supported the development of this treatment with $130,000 in grants over the last 5 years. Winning the "Most Successful Early Phase Trial" is really impressive when you consider this is across all cancer types, not just brain tumors. Congratulations  to Tocagen!"

Stephen, do you happen to know any details of the results?

Mike B

Monday, 3 April 2017

Treating Pulmonary Embolism - anticoagulants with brain tumour

My husband has been admitted to hospital with suspected Pulmonary Embolism.
The doctors are reluctant to prescribe anticoagulant due to risk of brain haemorrhage.
I am looking for any advice from anyone who may have had similar experience.