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