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.

GBM suck up cholesterol

http://www.cell.com/cancer-cell/pdf/S1535-6108(16)30443-3.pdf

Any thoughts/further info on this method?

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!

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:

https://www.ncbi.nlm.nih.gov/pubmed/21610107

https://www.ncbi.nlm.nih.gov/pubmed/21402712

and one other good one I found was:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2632551/

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?

Thanks!

Boswellia capsules

Reposted for Dominique

Dominique24 April 2017 at 19:22

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.

Dichloroacetate (DCA) for EGFRvIII positive glioma/glioblastoma

Metabolic targeting of EGFRvIII/PDK1 axis in temozolomide resistant glioblastoma

Click here for study

"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.

Click here for abstract

"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

Click here for abstract

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

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
Artesinate
RUTA 6
shark liver oil
Natcell thymus spray
C3 curcumin complex
boswellia
metformin
calphos
DCA
escozine

Questions about Celebrex and Tamoxifen

Hi,


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!

Agents for MGMT Unmethylated, PTEN Mutation, and PDGFRA Amplificayion

Hi,


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?


Regards
James Zhou

Oligo 2 meeting with Patrick Wen

Hello,

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.

http://www.practiceupdate.com/content/new-classification-scheme-for-low-grade-gliomas-clinical-implications/33428

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.


Maria

Quetiapine

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

https://www.gofundme.com/andersferry

"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
Mebendazol
Clomipramine
Metformin
Chloroquine

Glutamate, ROS and Endocannabinoids

At 7:40 in this video: https://www.youtube.com/watch?v=Cd5AYWX_bT4&t=1s 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.

Maria

Breast milk

http://www.naturalnews.com/028662_breast_milk_cancer.html

Thoughts? Further informations?

Thank you.