Thursday, 29 June 2017

GBM Caregiver Survey

Wanted to share this article for those who may have missed:

Where to donate in support of GBM research?

Anyone have suggestions on best organizations to donate to?  The desire is to help fund glioblastoma research that might lead to better treatments.

These are my ideas so far: 

Defeat GBM:  National Brain Tumor Society
National Brain Tumor Society general
American Brain Tumor Association research
Local research hospitals (Stanford, UCSF)

Expanded Access to VAL-083

"This is an expanded access program (EAP) for eligible participants. This program is designed to provide access to VAL-083 (dianhydrogalactitol) prior to approval by the local regulatory agency. Availability will depend on territory eligibility. Participating sites will be added as they apply for and are approved for the EAP. A medical doctor must decide whether the potential benefit outweighs the risk of receiving an investigational therapy based on the individual patient's medical history and program eligibility criteria."

There is also an upcoming phase 3 clinical trial that will test VAL-083 for recurrent GBM that failed Avastin.

Wednesday, 28 June 2017

PVS-RIPO with/without Lomustine

Hey all,

My wife is about 3 months shy of 3 years since diagnosis/surgery.  So far, she has not had a recurrence (we attribute that to this amazing community and a spectacular NO - although I'm sure tumor genetics is also driving that).  Yesterday, however, she had her 3-month scan and a new area of enhancement is showing.  Our NO is floating the possibility that this could be effects of radiation, but we have to go back in a month for another MRI to find out for sure.

That said, I am evaluating all of the clinical trials for recurrence in case we need to act quickly.  The first one I looked into is the PVS-RIPO (poliovirus) trial at Duke.  The Phase I trial closed (yesterday actually - it says June 27, 2017).  But it seems a new trial is now open - a Phase II trial that is randomized.  Every patient receives PVS-RIPO, but half of the patients also receive one single dose of Lomustine 8 weeks after the injection.

Does anybody know anything about this trial, or have any reasoning behind the addition of Lomustine?  I'm thrilled to see that this trial essentially overlaps with the Phase I trial, but I've never heard mention of adding a single dose of Lomustine.

Thank you all, and best wishes to everybody.


Monday, 26 June 2017


Does anyone have any experience with getting panobinostat prescribed by a US doctor? Are there any recent studies that might be available to convince our NO to get it for my son? Thanks!

Wednesday, 21 June 2017

Tempus Genetic Testing

Does anyone have experience with Tempus Genetic Testing? It is relatively new out of Chicago and I am told that it is more comprehensive and actionable than Foundation One as well as less expensive. Thanks.

Monday, 19 June 2017

Mebendazole dosage

Does anyone know where I can find the dosage information on Phase I trial for mebendazole? Thanks!

Peryll alcohol

Dear all,
I remember reading on this blog about a Brazilian doctor who can come and administer perryll alcohol, but I cant find the contact number anywhere. Can anyone help? Thanks!

Sunday, 18 June 2017

A new cocktail hypothesis

Blocking epithelial-to-mesenchymal transition in glioblastoma with a sextet of repurposed drugs: the EIS regimen. link to the study here

This is a sibling of CUSP9, as it has the same parents (Richard Kast, Marc-Eric Halatsch and company)

Saturday, 17 June 2017

Latest study on NAMPT inhibitors for IDH1 mutant glioma (preclinical)

The alkylating chemotherapeutic temozolomide induces metabolic stress in IDH1-mutant cancers and potentiates NAD+ depletion-mediated cytotoxicity

Unfortunately no NAMPT inhibitors have been approved for clinical use, although one is currently in trial.

Tuesday, 13 June 2017

How to take chloroquine phosphate


Sorry, I need your help again.

Should the patient take the chloroquine phosphate with TMZ just at the beginning 5 days of TMZ cycle? or take it at 28 days - the whole TMZ cycle?

Do you have ACT 001 clinical trial I report?

Best Regards
James Zhou

Friday, 9 June 2017

Question for Hydroxychloroquine sulfate


It is hard for us to buy chloroquine phosphate to treat my mother's GBM. Can we use hydroxychloroquine sulfate to replace it?

Some forums say both these two medicines can be used to treat GBM, but Ben William's book says hydroxychloroquine sulfate can't be used to treat GBM. We are not sure who is right.

Best Regards
James Zhou

suspected progression/leptomeningial disease

Dear all,
Just after NED MRI end of March, the third dendritic vaccine/Keytruda/vesanoid my son was hospitalized and the MRI shows  possible progression. Is it at all possible this could be pseudo progression? We know how hopeless leptomeningial disease is, but does anyone know of any trials? Any ideas are greatly appreciated.

Wednesday, 7 June 2017

Social Security Diablity Insurance

Does anyone have any advice, stories, tips and tricks with regard to applying for and receiving SSDI?  Thanks in advance.

Can't comment to any posts

I am not sure how this "blogger" works, but I cannot comment to any posts made by anyone. I have tried a few times, it says something like "posting" and then nothing, my comments get lost. Any help?

Comment: I can enter comments, use the Google Id, says "publishing", but when it refreshes the page the comment is not there.

Tuesday, 6 June 2017

Cleaning up gadolinium

For those that do literally dozens of MRIs with contrast I have been reading some articles on the accumulation of gadolinium in the body. This is a very good link explaining the risks and the various brands used during MRIs:

I called up today to inquire about the substance I have been receiving and I was met with some resistance in typical British "you are the patient, no need to know" attitude. But eventually I was told that the last two MRIs were with Gadavist which is one of the safest.

However I have also been reading on whether it is possible to eliminate it from our systems because if you have read the link above, well it accumulates.

There is a very good all round introduction on the subject here:


I would like to ask has anyone here gone on a chelation attempt ? What were your experiences?

PS: I am editing my original post as I cannot reply to any comments:

This is what I have found out so far.

A case for using tamoxifen to prevent malignancy progression?

Ben Williams used high dose tamoxifen. He also ate high quantities of soy products which are estrogenic, I wonder how these interacted?

Saturday, 3 June 2017

Microflora influences immunotherapy efficacy

This is the second paper I've read on the topic. I can't find the first one but it indicated that microbes related to sugar/refined carb consumption were higher in non-responders versuses those with more diverse microbiota resulting from a diet of healthier foods, lots of veggies.

So it seems what we eat can influence our cancer outcomes after all. A great reason to change your diet as early as possible as it may significantly improve outcomes, if immunotherapy is the route you wind up on. My guess is chemo and radiation aren't influenced by diet because of the way they work but newer treatments might very well be.

There are a few great books I know of on how to create a diverse microbiome. I can't quite recall them right now but I'll look them up later, if interested. You can influence your microbiota over a very short period.


Thursday, 1 June 2017

ONC201 expanded access for H3 K27M mutant gliomas

This is rather big news for H3 K27M mutant gliomas (including a high percentage of DIPG).

Expanded Access Program for ONC201 to Treat Recurrent Histone H3 Mutant Glioma (click here)

In a phase two trial of ONC201 for recurrent GBM, a 22 year old female with secondary H3 K27M mutant GBM achieved a partial response to ONC201, which has been sustained for over 6 months. One of her two tumors regressed by 85% and the other tumor regressed by 75% after 8 and 11 months of therapy.

A phase 2 study of the first imipridone ONC201, a selective DRD2 antagonist for oncology, administered every three weeks in recurrent glioblastoma  (click here)

Note that the H3 K27M mutation (also known as H3F3A K27M) is most common in brainstem gliomas of young children and young adults, including diffuse intrinsic pontine glioma (DIPG).  This treatment could turn out to be a breakthrough, as there is currently no known effective treatment for this tumor type.

Quality informative cancer forums

Hi all,

As I'm sure many of you do, I skim this forum (by far the most informative and elite in my opinion) as well as and a few others for daily updates of any kind in the world of GBM treatments.

Just want to check if anyone else has found other forums or go to websites that are worth adding to the daily check list.

thank you

Car T cells

Dear all,
Does anyone know of any place ( in the world!) that is doing car t cells on a compassionate basis? My son is under 18 still, so it doesnt seem possible for him to get anything at the City of Hope trial. Thanks!