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 cancercompass.com 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!

Best ways to maximize Avastin efficacy

I have searched BTCocktails and Astrocytoma Options to come up with a list of supplements and drugs that may make Avastin more effective. This is what I found:

- Chloroquine.

- DCA.

- CBD.

- Honokiol.

Does anyone have any other suggestions or is that it?

Steroids: Budesonide?

Has anyone tried budesonide pills (or inhaler) for brain inflammation instead of using dexamethasone?
Negative systemic effects are less with budesonide compared to Dex and prednisone.
I have no idea if budesonide crosses the blood brain barrier or if it would be effective against brain inflammation.
I am hoping it might be.

Thank you.

JB-3

Acyclovir/Aciclovir - has anyone tried this?

Hi Everyone

Just wondering if anyone has used the drug Acyclovir (sometimes spelled Aciclovir) with any success. The Care Oncology Clinic has recenly offered it to me. Also, any experiences in using it alongside CCNU/Lomustine chemotherapy would be excellent, as I might end up doing that combination of drugs.

Many thanks
Liam

Low Grade Glioma - your symptoms

Hi everyone,

I'm wondering if those of you with LGG can describe your symptoms? I had a seizure in my sleep and nothing else. (Docs always ask me about the seizure and I can't even tell them about that.) I started taking Keppra (3000mg per day, since I was pregnant) and then started getting mild headaches. Now I'm 5 weeks postpartum and experiencing dry mouth, burning tongue, tenderness in my temples periodically, weakness in my knees and rapid weight loss. All of this could be pregnancy related or not. I keep wanting to call my NO to report everything but that seems silly. (I just saw him about 2 weeks ago and had a stable MRI on April 6.

So what do/did you experience? What should alarm me and what shouldn't? Can side effects to medication come on months after starting them?

Thank you.

Maria

Bad Side Effects from Cocktail? Cannabis OIl? Combo? What caused them? What to Do?

Hello all. This is my first post. I apologize if this question has been answered but in a few searches I did not find answers to my questions. If anyone can point me to past posts that may help me or has any knowledge I would appreciate it. What I have read on this blog has been invaluable and I am sure will offer much guidance in the future.

Bottom Line: We implemented a cocktail:

• Celecoxib (Celebrex), 200 mg/2x
• Chloroquine Phosphate, 250 mg, 1x a day,

• Metformin, 850 mg, 2x a day,
• Disulfiram, 500 mg, 1x a day
• Valproic Acid, 500-1500 mg, 3 x a day, only got to 1000 mg dosage

that started a week before standard radiation and TMZ. They were introduced one day at a time. There did not seem to be any side effects but by the second week when he was taking all together along with Keppra 750 mg 2x a day, TMZ 140 mg 1x a day, 8 mg of Zofran 1-3 x a day he was extremely nauseous and could not eat. He was also extremely tired and drained and all he wanted to do was sleep.

However, more seriously one weekend, in addition to sleeping 22 hours a day he had suicidal feelings, also paranoid, thinking someone wanted him to kill himself, being afraid to be by himself and also somewhat hallucinating, at times thinking he was in heaven.

During the week we also had added .3 g of DCA 3x a day.

In the previous weeks, even before the cocktail he had been taking Jayden's Juice, a 28:1, CBD to THC cannabis oil tincture, 2-3x a day plus occasional capsules of 10 mg of THC to 10 mg of CBD with no adverse effects.

However the night before the suicidal episode he had taken a capsule of 50 mg of THC. He woke up earlier than usual, feeling the most alert and least nauseous that he had felt in weeks so that morning he had a 10 mg THC to 10 mg CBD capsule and later that morning everything went wrong.

He was also taking these supplements:

• 1 multi vitamin
• D3-10,000 mg
• Melatonin, 20 mg
• CRONaxal, 100 mg oxaloacetate and 150 mg ascorbic acid, 3x
• B1, 100 mg, to help with DCA
• Digestive Enzymes, 3 x/day
• Omega-3 Fish Oil, 500 EPA, 250 DHA-3 x/day
• Boswellia, 400 mg, 3x
• Adaptocrine (100 mg Vit C/ ginseng 200 mg/Ashwaganda 200 mg/Holy Basil 100 mg/Rhodiola 75 mg/Eleuthero 50 mg, Pantethine 78 mg) 2x
• Curcumin 400 mg plus ALA 150 mg-3 x
• Acetyl L Carnitine-500 mg-3x, to help with DCA
• Maitake Full Spectrum Extract-300 mg 3 x
• Coriolus Super Strength-500 mg, 3x
• Serotone Apex Energetics(Vit B6 10 mg/ Niacin 50 mg/Folate 200 mcg/Vit B12 1000mcg/magnesium 10 mg/St John’s Wort 200 mg/5-HTP 75 mg/SAMe 60 mg) 2x
• Selenium drops, not using now
• Probiotic, 20 billion

His RO thought it was extremely unusual that he was so tired and had his THS and free t3 and free t4 tested. The TSH and free t3 came back low which was unusual in that it points more to the pituitary than to the thyroid. He has also been extremely cold especially his arms. At this point I told the RO all what he was taking and agreed to stop the off-label drugs until we could figure things out.

We stopped all off-label drugs 3 weeks ago and we stopped the cannabis oil for a week but for the past two weeks have been trying different ratios and strains of full extract cannabis oil as well as different methods of ingesting.

He was put on Dex, 2 mg for a couple of weeks but is now off it. Overall he has felt much better, energy varies, has an appetite most of the time and nausea occasionally. He's been having some really great days full of energy mostly when a lot of people are around but otherwise just wants to sleep.

He finishes his 6 weeks of RT tomorrow. I am trying to figure out what to do about the off-label drugs. The little research I have done points to the chloroquine causing the most extreme adverse effects, paranoia, hallucinations...

Has anyone else had this experience? Any of these side effects? Know what causes them? A combo of drugs?

Do I re-introduce? If so, what? when? What role do these drugs play after the initial SofC? How do they work with the adjuvant TMZ? We did not use Celebrex very long because it is an NSAID and he had a spine surgery and for bone fusion they advised waiting 3 months. We also have a prescription for minocycline but have not used it yet.

Back Story:
My husband is 45 and above average healthy until his grand mal on 2/16/17 where he dislocated his shoulder and had a 75% compression fracture of his T-8. He was subsequently diagnosed with a GBM and had a complete resection on 3/3/17. His tumor was in his left temporal lobe and he had his hippocampus and amygdala removed as well as part of his occipital lobe and parietal lobe. He is functioning quite well, better than expected despite these deficits.

Thanks for any insights.

Is it legal to buy CBD oil in Vancouver?

Does any body know if it is legal to buy CBD oil in Vancouver?


My friend tell me everybody can have 5 gram Marijuana from August this year? Correct?


Best Regards
James Zhou

Left over supplements

Hi everyone,

Unfortunately my dad passed away last month after fighting for 13 months. He got the rare side effect of a gastrointestinal tear after 1 avastin infusion.

This blog helped me a lot through the journey so I wanted to pass along our unused supplements if anyone wants them. They are opened.

Mushroom science turkey tail - 1/2 full bottle
Longview curcumin - almost full bottle
wokvel Boswellia serrata extract - full bottle
Pterostilbene - full bottle
Myriams hope CBD oil - almost full

Email me at jennabeck27@gmail.com

sugar substitutes

Dear all,
My son has been pretty good with avoiding sugar, but on a rare occasion when he wants something sweet (sweetening a veggie smoothy or adding it to baking), which substitute do you think could be less harmful - honey? agave? stevia? Thanks!

Jeanne Wallace

Hi all,

Anyone have experience with Jeanne Wallace/Nutritional Solutions? I just read about another long term GBM survivor (10 years) who used her services. It seems there are a few of them. I'm thinking of going with her.

Maria

Targeting Tumor Metabolism - DCA, Selenium, and CoQ10

Hi all,

My Dad (diagnosed GBM Nov. 2016) is soon to be on his 6th TMZ cycle and has had two Avastin Infusions. I've mentioned before on here we are going to use the minimal amount of Avastin, spread out as far as possible, as to not allow the tumor to adapt. We have had great results from Avastin so far.

My hunt to find ways to make Avastin more effective quickly led me to the idea of adding DCA to our cocktail. Originally when I mentioned DCA to our NO he didn't think it was worthy for reasons I didn't full understand.

Now that we are using Avastin I will bring this up again, but my research on DCA and it's "support" of the mitochondrial function also led me to Selenium and CoQ10.

We already have a hefty daily cocktail so I'm just checking in if others have opinions:

Few quick questions:

• Are there any other current studies that show dosage amounts for DCA with Avastin and it's benefits when taken together? I really want to show a good reason for pushing DCA when I see the NO next. I have only found the one referred to on the astrocytomaoptions website here (using mice): 

https://www.ncbi.nlm.nih.gov/pubmed/23361368

• CoQ10 - I'm curious why this supplement is not on the shared "Pharma/Non Pharma List Rankings for GBM" spreadsheet. This appears to be just as beneficial as Selenium in supporting mitochondrial function. Any thoughts on why this isn't mentioned as often as Selenium? Preferred dosage and brand?

• Selenium - I was excited to see is ranked fairly high on the spreadsheet. I also have read it not only helps with mitochondrial function but can potentially make TMZ treatments more effective - looks like standard dosage is 200mcg/day. Any opinions on good brand?

Thank you all for reading and supporting.

Ari

Curcumin

Hi all,

My apologies if there is an answer to this somewhere on the blog here.

My ND recommends BCM-95 Curcumin. But I see most people use Longvida. I'm trying to figure out which is better for crossing the BBB. I know there is a Curcumin folder but I'm having a hard time accessing anything online right now.

So, thoughts, experiences, etc. with BCM-95? She says it's the one most researched.

Also, is there need to worry about curcumin causing the tumor to adapt? I've gotten a few studies to open and it seems to impact the tumor in a number of ways. Could this pose a risk?

Thank you.

Maria

PARP Inhibitors - Combining SAHA and Olaparib? Preparing for plan b

Hi All,

My Dad was diagnosed with a GBM in October 2016 and has since had chemoradiation, on his 5th TMZ cycle, and has had two Avastin infusions.

The Avastin infusions immediately cleared up his MRIs (the inflammation, not the tumor) and have allowed us to taper his decadron from 4mg/day to 2.5mg/day, but we know that Avastin is not the long term answer so I am preparing for our next step.

As I'm sure everyone is, I'm pushing to have a better than standard of care "newly diagnosed stage" plan (which is right now), as well as a plan for if/when we hit the "recurrent stage".

My last post mentioned our NO's interest in Abemaciclib and the possibility of getting compassionate use, but since then our NO was at a Brain Tumor Conference in Zurich, Switzerland (Lilly, the drug manufacturer of Abemaciclib was there) and did not receive any promising results or information to keep us pursuing this path.

Our next plan is to look at PARP Inhibitors. An article and strategy that quickly caught my families attention is about the combination of SAHA (an HDAC class I + II inhibitor) and Olaparib (a PARP inhibitor).

See the following article below:
https://www.ncbi.nlm.nih.gov/pubmed/26794465

and for full article see this link:
http://onlinelibrary.wiley.com/doi/10.1016/j.molonc.2015.12.014/full

A previous post on this blog mentioned Rucaparib (another PARP inhibitor) has been shown to not penetrate the blood brain barrier effectively, but has anyone heard specific results about oliparib?

Both Olaparib and SAHA are being tested individually in currently active clinical trials with TMZ but I have not been able to find any of the results.

One caution our NO mentioned was that PARP inhibitors can cause issues with blood counts, especially for someone who is on TMZ cycles.

Would love to hear what you all think about this plan and whether you have heard the good/bad/ugly on the PARP Inhibitor trials I mentioned about.

Amazing community we have here. Thank you all for the time.

Ari
Oakland, CA

Oligoastrocytoma grade 3, progression, next steps?

Hello all and thank you for this great community!

My sister (30yrs) was diagnosed with anaplastic oligoastrocytoma GIII a year ago. This was a reoccurence, since 5 years ago it was oligoastrocytoma grade 2. Back then she received surgery + 8 cycles of TMZ.
This latest one was partially removed in surgery (it's in temporal lobe). She received RT + TMZ (60Gy, 30days) and after that she has completed 10 TMZ cycles. Latest MRI showed that there might be tumour progression, but it's not definite according to doctors. Next scan will be in two months. Until then she will continue on TMZ for two cycles more.

We're a bit concerned since part of the tumour is still there even after RT and chemo and it might be progressing.
PAD report says: IDH1 negative, mitosis 33/10 HPF, MIB activity 25%,
Previous tumour showed 1p19q deletions.
We have asked for a more specific analysis of the tumour and will receive results in couple of weeks (MGMT, EGFR, etc.).

Until then, our NO recommends to continue with TMZ and see what MRI shows in July.

We have plans to try Keytruda or other aPD1, what's your view? Or is there some other sytostate (CCNU, PCV) we should try before aPD1 ?

Her clinical condition is very good so we try to balance between good quality of life and try to treat this when there's better changes for that.

Supplements she currently takes:
-D3
-Selenium
-Longvida Curcum
-Probiots (L. Casei et al.)
-Leveriacetam

br and thanks,
Juha

Repaglinide (diabetes drug)

Identification of repaglinide as a therapeutic drug for glioblastoma multiforme

Click here for link to the abstract

Uploading the study to the Brain Tumor Library, folder 2 (Therapies - preclinical (in vivo) studies

Disulfiram and alcohols

I was thinking about disulfiram and alcohols - does it interacts with ethanol and methanol only? What about sorbitol, mannitol etc? Should all "-ols" be avoided in diet?
Mainly what about perillyl alcohol - it is monoterpene but does it have something in common with alcohol?
Can you take them simultanesly- disulfiram and perillyl alcohol (solution with NaCl only)? What are your thoughts and experiences?
Bb

Immunotherapies and Immunotherapy Clinical Trials

Does any one know which hospital has good immunotherapies or immunotherapy clinical trials for GBM patients in Canada? Especially in Vancouver?


Best Regards
James Zhou

Duke Dendritic Cell Vaccine Trial

I don't understand why they need to run another trial with a comparison group. Isn't median survival well established to compare it to?

http://www.dukechronicle.com/article/2017/05/duke-researchers-develop-treatment-that-triples-survival-time-of-brain-cancer-patients

IGF-1 (Insulin Like Growth Factor)

Hi all,

Stephen and others, I'm wondering if you all could shed some light on IGF and whether I can influence this via diet or not. The AO site says so but I guess I'm looking for more information.

I came across this study yesterday and this is what is causing my interest. It does mention IGF-1 serum close to the bottom and references other studies, which I'm about to go and read now.

https://www.nature.com/articles/s41598-017-01553-2

Maria

Cancer Commons interview

I did an email interview recently for Cancer Commons that was posted on their website today.

https://www.cancercommons.org/super-patients/super-advocate-stephen-western-helps-brain-cancer-patients-keep-up-with-the-latest-research/


See other patient and advocate profiles as well.

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.

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:
http://btcocktails.blogspot.com/2017/02/tom-wangerin-cocktail-profile-and.html

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 

(https://clinicaltrials.gov/ct2/show/NCT03014804?term=immunotherapy+OR+dendritic&cond=glioblastoma+recurrent&state1=NA%3AUS%3ACA&state2=NA%3AUS%3AWA&state3=NA%3AUS%3AOR&rank=1)

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?

Hello,

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.

Maria

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.

Maria

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.

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!!

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.

Penfluridol

"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

Tocagen Trial News

I saw this posted on the Musella website (virtualtrials.com 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

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.

Scientists dicsover mechanism that causes cancer cells to self-destruct

https://www.sciencedaily.com/releases/2017/03/170327102352.htm

Nivolumab Opdivo infusion and increased seizures?

I was going to ask a question in this post but decided to start a new one instead.

Here's our latest situation:

• My wife has been on Optune for the past seven months, averaging about 69% monthly compliance (two months were 0, the rest were above 85%).
• We started nivo 11 weeks ago.
• Prior to starting her first infusion, there was a new growth, which prompted the nivo in the first place.
• After the third infusion, there was a second new growth.
• My wife just had her fifth nivo infusion this past Monday, March 27th.
• Today, Wednesday, March 28th, she had two light focal seizures - she was conscious the entire time.
• Note that we are not on Avastin nor or Dexa as she doesn't have enough edema to warrant it; at least according to her last two MRIs.

My question:

Are increased seizures a common occurrence when using nivo?

I've not been able to find anything very compelling on the topic.

Look for Lomustine and Procarbazine

Hi all,

In china i can not find these two drugs, anyone have experience purchase them online? I found the price various a lot on different site. Don' t know which site is reliable

Regards
Roy

Steroid taper

Hi all,

My dad is on the last leg of his steroid taper and is really struggling. Extreme fatigue and total loss of appetite as well being highly emotional. I think these are all common withdrawal symptoms but was wondering if anyone knows of anything that might help?

Auras

I know this is a cocktail group but since there are so many well informed people here I thought I would ask. Since my surgery in November 2010 I have been having auras on average every nine days. We've tried Keppra then Keppra with Vimpat then Depakote and now  Lamictal and  Lamictal extended release. I still have them every nine days. I've been tracking them for about five years and they are most common during exercise or strenuous activity. I have gone as long as 10 weeks but that was a one time occurrence and I don't know what was different during that time. That was several years ago. Does anyone else have auras and if so are they more common at certain times? I find it strange that I have them so common because people with full seizures don't seem to have them that frequently. This has really affected my quality of life. I hope to be a long time surviver and would love to get control of these. It is to the point where I am slipping into despair over it. Any help appreciated.

What now? Help!!!

All-

Our 5 year old daughter's GBM has returned.  Last month we travelled to Tubingen Germany to begin a customized peptide vaccine treatment for her.  During the course of the treatment injection 'boosting phase' she began to complain of her back hurting.  The co-injections prescribed by the vaccine protocol are Leukine which has a side-effect of "bone pain".  We thought her back pain was this but her symptoms worsened quickly towards the end of our visit to Germany and upon returning to the USA requested a spine MRI which revealed large tumors in her spine.  This came as a crushing blow to us since she had been NED since having a total resection a year ago.

She has begun radiation on her spine along with steroids which has improved her mobility.  Another brain MRI revealed very small growth in her head in the brain base and on the optical nerves.  A subsequent head MRI 16 days later shows very little growth in the head lesions so that is a good sign in terms of the brain cancer growth rate.

We see the best possible chance for her is getting her off of the steroids and ending radiation ASAP.  To this end we have started her on Avastin every 3 weeks and are not planning to perform any head radiation at the moment.  We have had all of the remaining peptide vaccine doses sent to the USA so that we can continue her peptide injections every 2 weeks once the radiation stops in the hopes that the vaccines have an effect on her tumors.

We are aware that things do not look good for our daughter but what we are really frustrated with is the lack of options we have been presented with by her oncology team.  As any family dealing with this awful disease, we are willing to go anywhere for treatment.  What would be the collective advice at this point?

• Polio vaccine at Duke _ not possible due to multi-locations of recurrence

• Dendritic Cell Therapy?

• Who is doing the best work with checkpoint inhibitors?

• Is there an institution that can pull biopsy of tumor material from blood/CSF with best results towards sequencing of the new tumors?  MSK unwilling due to swelling

• Other?

Thanks as always to this community.

Winston

Boswellia for brain edema

Hello, I have started using WokVel Boswellia Serrata 333mg , 4 pills 3 times a day, in hopes of helping with possible
swelling after RT. That is still short of the 4200mg used in study, so maybe I should increase a bit. Been using it for 3 days.   My husband is currently taking only 1mg of decadron, and when NO has tried to increase it he gets in a very bad emotional state. Has anyone had success with Boswellia ?
Thank you!!

Vitamin c

There is very little here about vitamin c. Our naturopath recommends high dose vitamin c. What are your thoughts?

looking for a new NO (pediatric)

Dear all,
Has anyone had any luck with an oncologist / or just family doctor willing to prescribed  CUSP9 ? Both of the  NO's at CHOP in Philly and at Rutgers in NJ are not even willing to prescribe Keytruda at this point. What makes our case even more complicated is that my son is only 17, so he still falls under pediatrics which limits our options even further. We are in New Jersey. Thanks!

(Arabinoxylan) Rice Bran improves natural killer white cell activity

Came across this, which is an lengthy advertisement but well cited about how enzymatically modified rice bran (EMRB)/Arabinoxylan substantially increases the cytotoxicity of natural killer white cells.

http://www.lifeextension.com/magazine/2015/1/activate-your-natural-killer-cells/page-01

Here's the NCBI abstract:
https://www.ncbi.nlm.nih.gov/pubmed/25541298

My question is this: If someone is taking a PD-1 inhibitor, would it make sense to also supplement with this or is it akin to putting gas on a fire?

Thoughts?

Hello, hoping for some advice. My husband was dx Grade 2 Astrocytoma in Jan 2016. Since the tumor was so wide spread in 3 diff lobes and MGMT methylated we tried  TMZ only, bc RT couldve caused cognitive decline. He did TMZ for 6 months with stable scans. But then went off for lumbar fusion surgery bc in so much pain. (Long story... surgery was disaster and ended up on walker and horrible pain afterwards) He began having seizures, Nov 28th so we had an MRI done Dec 1st of 2016 which showed mutation to GBM in a sphere  2cm in medial temporal lobe and also enhancement in the cerebellum both sides. He had craniotomy on Dec 16th to remove spherical tumor. We were told after surgery that RT was a must, so we met with RT oncologist on Jan 3rd for mask fitting. In the meantime, while waiting for RT to start my husband began having headaches and mild confusion. A MRI on Dec 17 showed the tumor had grown after craniotomy 10 days earlier.  It took a long time to get scheduled for RT, but he finally started Proton RT Jan 24th 2017. He finished Chemoradiation on March 2nd, after 28 sessions. Dr thought that would be good to stop a little early bc he us 80. He was receiving 1.8 gy per session. But to a large field. 3 diff angles. He was confused during RT, but Dr insisted it was from valium he was taking for claustrophobia (bc of mask) so we tapered him off valium last week of RT. It has been 15 days since he has had any valium and his confusion seems to get worse daily, and he realizes it. He is very devastated and says that he has lost his mind, and thinking skills. Im trying to encourage him not to give up he may get better.  It has only been 8 days since finishing RT, but I am worried this confusion is either swelling from RT or tumor growth. I called Dr yesterday and they want me to increase his decadron, which they have had him on entire course of RT 1mg in morning, to 2mg.  And just wait for our follow up on March 28! Hello! That is a long time to wait I worry if it is growing Im giving it all that headstart, but the question is: can you get an MRI this soon after RT that can distinguish btwn RT and growth? My other question is, Has anyone had confusion like this during and after RT? Thank you so much for help❤I thought of trying Boswellia, but pharmacist said it could interact with other drugs.

Early reccurance? please help

Good morning all,
I have posted a story of my husband last year, but now I am in a black hole and l need help.
He was diagnosed with GBM IV October last year. He had big tumor in right frontal lobe over 6cm diameter. After some time we have found out that it wasn't total resection with some tumor left in corpus callosum and lodge. Till the end of the year he had finished his 6 week course of chemo and radiotheraphy. Then he was switched to monthly TMZ.
At that time we also have started vaccination with NCV because we didn't have fresh tumor tissue for DCV. A week after each vaccine he had seizures despite the fact being on Keppra and Depakine. For the first time we thought it was time coincidance. But after second he did extra scan and yesterday we found out he has two tumors - one in the lodge 5cm and second 4cm crossing corpus callosum in left hemisphere and huge oedema.
Today neurosurgeon told me they won't operate and that the treatment is over.
He is on meds from Cusp-nd protocol from the pretty begining, his tumor was MGMT promotor methylated so I don't know what has happened and what to do.
Can vaccination have such a huge impact on scan?
I don't know if we should try
rechallange it with metronomic TMZ,
try different chemo
go on Avastin
Perillyl alcohol
Nivolumab
Any thoughts....
I thought we have a little more time together...
Pat/brainbutton

canadian pharmacy on-line

Our NO is being extremely unhelpful getting prescriptions for repurposed drugs - has anyone had any experience with online orders from Canada? I am looking at  www.365worlstorerxe.com . I am just afraid to order before I hear some feedback since I have already got burned by ordering sativex (from a different site!!!) that never arrived. Thanks!
Thanks!

Treatment questions

I have a few questions I've been thinking about and would love your opinions. Background first, my husband is fighting an AA3 right insular brain tumor. Surgery removed 80% of the tumor and then an emergency surgery three days later removed nearly his entire right temporal lobe.  His tumor was never tested for MGMT status but it is IDH1 mutated. Surgeries were in July 2016 with TMZ and radiation following in September and October.  He is currently finishing up his 5th cycle of TMZ, been wearing Optune since the end of November and will be receiving his 5th round of NDV infusions at the IOZK clinic this coming week.  Last MRI done in early January has shown no tumor change from his original surgery.  My questions are:

1. Research has shown that patients who complete 12 rounds of TMZ often have longer periods of PFS. However, vaccinations that would begin in May at the IOZK clinic require that he discontinue TMZ or else risk them not working. We are spending all our savings to do this treatment. What I'm wondering is if we should continue on as planned with 6 cycles of TMZ and then vaccinate or try to push back vaccinations to complete 12 rounds of TMZ and then do vaccinations?

2. Seizures endured during his two week hospital stay in July required 4 different medications to calm my husbands seizures. Before being discharged, his medical team were able to get that down to two medications: Keppra and Vimpat. He was prescribed his maximum dose at 3000mg and 400mg respectively. Since learning of this website and studying different supplements and such, with all the pills he is swallowing he's slowly weaned himself down to 2000mg and the occasional 200mg if he remembers his lunch medications. His NO has never been particularly interested in bringing any of his seizure medications down, probably because of his chart notes. At our last visit our NO was questioning his moods. Asking if he seemed more agitated than usual. I lied and said no because I was worried that she'd take him off of Keppra (the medication we were discussing). My understanding is that it helps with MGMT status. So finally my question is, should I try and keep him on Keppra for its benefits or let them change his seizure medication to Gabapentin?

Thank you for any insight in advance. I'm really wondering what others might do in our situation.

Radio/Chemotherapy vs Osteonecrosis

Hi, I would like to know if Radio and Chemotherapy could generate Osteonecrosis. Recently my niece received the diagnosis of Osteonecrosis (after a MR), she has had pain located in her hip, and a little limp. Now we are consulting the best way to heal, but we have doubt about if it’s advisable to stop de chemotherapy.

My niece after two operation (she has a GBM no methilated) she was treated at the same time with radiotherapy and chemotherapy for  6 week, and right now she is taking the 3^rd cyclo of six (temodar 5x23 about 360 daily).

I’m looking forward for your answer.

Sincerely, Jose Mª

CUSp9

Dear all,
We just came back from the second visit from IOZK with a list of CUSP9 drugs:
1.valdoxan
2. naproxen
3. antabuse
4. minocyclin
5. propranolol
6.spironolacton
7. Valproic acid

The only one that seems to be available over the counter is naproxen as Alive. I saw also antabuse on-line at Canadian pharmacy, but the rest are definitely prescription in the US. Does anyone have any experience getting these? Thanks!

Very intresting read

https://nutritionandmetabolism.biomedcentral.com/articles/10.1186/s12986-017-0178-2

I would love to hear stepehens views on this

Not sure this is news or not.

https://scienceblog.com/492536/study-finds-no-evidence-common-herpes-type-virus-aggressive-brain-cancer-tissue/

I was curious to there is a low grade trial. 

Perillyl alcohol formulation

This was sent to me by a patient caregiver and was written by someone with a PhD in pharmacology.  Of course the first hurdle is obtaining the perillyl alcohol in the first place.

avastin

dear all, does anyone happen to have a link to the study that Avastin  helps in the short term but causes satellite tumors? Thanks!

Upcoming trial of modified poliovirus for children ages 12-18 with recurrent malignant glioma

The anticipated start date is June of this year.

Phase Ib Study of Oncolytic Polio/Rhinovirus Recombinant Against Recurrent Malignant Glioma in Children
NCT03043391

Stop chemotherapy?

Hi, firstable I would like to thank you all for your support. I’m again sharing a new question. My niece after two operation (she has a GBM no methilated) she was treated at the same time with radiotherapy and chemotherapy for  6 week, and right now she is taking the 3^rd cyclo of six (temodar 5x23 about 210 daily). At the end of the sixth cyclo, the doctor had considered appropriate to stop the chemotherapy, and there is not a forecast about to continue with new chemo treatment. I would like to know your opinion about that. We are quite a bit worried, because the risk of recurrence, and we don’t know if it would be convenient to talk and insist to the doctor not to stop the chemo treatment.

I’m looking forward for your answer.

Sincerely, Jose Mª

Dexamethasone - "Pseudo progression "

My husband commenced dexamethasone at 2mg in the 4th week of radiotherapy. He continued that for 2 weeks and then was weaned off. After 2 days off he had a partial seizure of one leg. He was re-commenced dexamethasone at 4mg. He has been on the 6mg for 4weeks. He has symptoms of being unbalanced and difficulty moving one leg so the dose has been increased to 8mg. Within hours he could walk better. How long to "too" long to be on this drug?

chemo with dendritic vaccine

Dear all,
My son is finishing his second vaccine at IOZK. His tumor is astrocytoma III, H3K27m, low methylation ( our doctor still won't give us the percentage!), clean MRI ( only 4 months since surgery)
Van Gool is against any chemo for now. He wants to do another MRI in three weeks, and he added Accutane and Keytruda this time. Our US oncologist wants to do avastin and then temodar with CCNU. Another well-esteemed Russian NO who is very open- minded ( she was the one who recommended van gool to us) thinks we should continue with temodar while on vaccine since there is a good chance it worked till now. We are very confused - tend to just trust Van gool, but scared to give up chemo even for a month. Any thoughts? thank you!

Gamma knife for low grade glioma

As there are so few studies for low-grade glioma, it is noteworthy whenever anything is published.  A new study on Gamma knife for low-grade glioma is being prepared for publication:

Gamma Knife Radiosurgery for Low-Grade Gliomas: Clinical Results at Long-Term Follow-Up on Tumor Control and Patients' Quality of Life

I'll make a new Gamma knife subfolder in folder 1 of the Brain Tumor Libary and upload this study there.

Avastin & Lomustine Combo

We are considering adding Lomustine to Avastin for recurrent GBM.

Does anyone have experience with this regimen?

Thank you!

Low Karnofsky (KPS) + Treatment GBM in Queensland

Hello everyone.

My 54 yr Mother in law was diagnosed with a tumour on 19th January and had surgery on the 24th January. They removed 80% of the tumour and confirmed it was Glioblastoma.

She did not recover well from the surgery. She was non responsive for a few days in ICU. Fast forward to now and she is yet to receive treatment.  My mother in law has very little movement in her left side, is eating mash and drinking level 2 liquids which are rather thick. Bed ridden, in hospital being taken care of. She has physio every day and is slowly getting stronger and more movement on that side.

She received her diagnosis yesterday and wants to fight this. We want more time. I am searching for others who have had this same start to their battle with GBM. Thank you.

About dosage of Maitake-D liquid version

have anyone tried the liquid version of Maitake-D? my wife is hard to swallow too many tablets and capsules, so i am trying to get liquid versions for her. the quesiton is about the dosage, similar to tablet issue, it says: standardized to contain 30% D-fraction      22mg, that is for each 6 drops, if it means each 6 drops contain 22mg D-fraction, 100mg per day means around 27 drops a day. if 22mg only contain 30% D fraction, 100mg per day means around 90 drops a day. which one is correct?

Roy 

Tom Wangerin - Cocktail Profile and Questions

Hi all,

Although this is my first post, I have been reading every minute of every day. Such an amazing wealth of information on here. I would appreciate any advice on our current course of action and opinions on our cocktail.

My dad was diagnosed with a grade IV GBM. He had surgery on 11/23/16 with 95% resected.

Lab Results:
MGMT Gene Promoter Methylation – Detected.
Percent of MGMT Methylation is 36.19%
IDH1/2 Mutation – Not detected
Positive for 1p Deletion

• Completed his first round of daily chemo/radiation on 1/19/17.
• Our first image was taken on 2/3/17. We had our first consultation with the UCSF Tumor Board (Dr. Butowski) on 2/7/17.
• Tumor had not seemed to grow in size any, but did morph into a new shape/area which is scary to see. Next image in 2 months.

Currently taking:
·       Dexamethasone (Decadron) – He is currently taking 4mg/day but we are doing what we can to wean him off. We have been told this will dictate whether we go on Avastin.
·       Eliquis – blood thinner - 5mg twice a day
·       Keppra – 500mg twice a day.
·       Bactrim (Antibiotic) – Original oncologist prescribed during chemo.

Supplements:
1:1 CBD/THC – Tincture drops in day, Oil at night.
Probiotics – Sibiotica (K-97)
Curcumin - Nutrivene Longvida 1000mg - 1x Morning 1x Night (1000-2000mg daily)
Fish Oil - Vital Nutrients - EPA-720mg, DHA-480mg per cap - 1x Morning
Boswellia Serrata Extract - Progena Meditrend – Currently taking (3) 333mg daily.
Melatonin - Vital Nutrients - 10mg/cap - 1x at Night (eventually will do 20mg)
Mushroom Extracts - Turkey Tail (Coriolus), Maitake D-faction, and Reishi each once a day.
Berberine - Vital Nutrients - 200mg/cap – starting with 1x day, soon 3/day.
Debating whether to add - Resveratrol and Green Tea Extract

Our NO was okay with all and suggested adding Cronaxal. I’ve struggled to find much convincing information out there, but I do trust our NO. Now the question is to use Cronaxal (expensive and high dosage) or get Sulfasalim (which Stephen ranked pretty high on his spreadsheet).
I read that this can benefit those that are NOT IDH mutated (which is us).

Genetic Testing
We are getting the tumor tested from Foundation One for more details – once we make sure there is enough tumor for them to test, and have some left for potential clinical trials. I’m keeping an eye out for EGFR, p53, VDR, HIF-1.
Any thoughts here?

Hoping for some advice in a selection of the following:

**Vitamin D3 – In some cases Vitamin D3 caused proliferation in some patients (Stephen W speaks of this: http://astrocytomaoptions.com/supplements/). Our NO was okay w/ Vitamin D3. Would checking his VDR receptor be of value for determining this, or is it safe (and potentially beneficial) to take 5,000-10,000iu daily regardless of tumor type?

I was very excited about a few of the prescription drugs below, but our NO was certain that none of them get past the blood brain barrier while taking doses safe for humans. We are still willing to give a few of them a shot, but I’m struggling to decide which combinations.

·       **Chloroquine Phosphate – (if overexpressing the EGFR protein or p53 status is unmutated) & **DCA - Sodium Dichloroacetate –(if HIF-1 is expressing) http://astrocytomaoptions.com/targeting-tumour-metabolism/
·      **Disulfiram – This drug looks like it has amazing potential.
http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=707

·       **Sildenafil & Celebrex: can work synergistically for both getting past blood brain barrier, anti-tumor qualities, and Celebrex potentially helping with a bit of edema.
http://onlinelibrary.wiley.com/doi/10.1002/jcp.24843/abstract

·      VT-122 (Etodolac & Propranolol) – with low dose daily TMZ schedule. This had great results. Any reason why more people aren’t doing this themselves?
(http://meetinglibrary.asco.org/content/151704-156)

·       CUSP9 – Looks like an amazing plan. I am yet to read of any results but I know many are starting to replicate this cocktail on their own.
http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path[]=2408

Current Plan:

I.         TMZ Schedule – Because he is MGMT methylated it was an easy decision to go forward with the monthly TMZ cycles. All of our docs have insisted on the high dose 5days/month schedule rather than a metronomic schedule, regardless of whether EGFR is over expressed. Thoughts?
https://academic.oup.com/jnci/article/107/5/djv041/891259/EGFR-Amplified-and-Overexpressing-Glioblastomas

II.         Optune Machine – The UCSF board feels it’s not as beneficial as some of the studies make it out to be, and with it being such a pain to wear for the rest of your life… it’s not that easy of decision even with insurance coverage. I’m undecided here.

III.         Prescriptions with TMZ/Avastin - If you had to pick one prescription duo to take with TMZ and one prescription duo to take with Avastin to make them more effective which would you pick?

Thank you all for pitching in. This journey has been life changing, but manageable with the help you all bring.

Conversation with NO

Dear all,
I need some advice as to how much to share/not to share with our NO regarding my son's vaccine treatment. We just started vaccine with Van Gool  ( three weeks after the end of chemoradiation)who thinks my son should definitely not do any  chemo while on immunotherapy (except for, if we have PD1 , maybe Keytruda). He has low MGMT expression, which justifies the use of TMD, but his blood counts dropped really low the last few weeks of chemo and he generally tolerated it very poorly.  Our NO previously was talking about either doing avastin or/and maintenance or CCNU based on the post radiation MRI ( which we will have for the first time since surgery in October).
While I tend to go with Van Gool's idea, I am not sure how much I should tell our NO. I am afraid if we put it on record that my son is doing DC vaccine, that would preclude him from further clinical trials. Conversely , if we don't follow the standard procedure, maybe we could be excluded from trials as well. Our NO is a good guy ( not a brilliant professional, though), but I am not sure how much I should/should not share with him.
Thanks!

Temozolomide vs PCV for recurrence

My husband's glioblastoma has recurred.  He is having surgery for the second time (first time was August 2015).  His NO is considering either a second course of TMZ or PCV. Any views on which may be better please?  He is methylated and IDH1 positive.
thanks
Anne Marie

Alpha lipoic acid

I find this very interesting reading
http://jeffreydachmd.com/2016/05/alpha-lipoic-acid-anticancer-agent-burt-berkson-md/

Thoughts?

Hi Stephen,
Could I check if my interpretation of the G34r mutation of GBM is correct.
Does this mutation mean that only a small part of the tumour is methylated?

Stephen W added the following image from the study Hotspot Mutations in H3F3A
and IDH1 Define Distinct Epigenetic and Biological Subgroups of Glioblastoma

Olaparib

Hello guys,

2 days ago a study about olaparib and IDH mutant gliomas appeared. Since olaparib is already an approved PARP inhibitor for treatment of ovarian cancer and trial for gliomas in the end of 2017 is expected, I thought someone might find it useful.

"The researchers tested several existing cancer drugs on the mutated cell lines. They found that tumor cells with the mutant genes were particularly sensitive to a drug, olaparib, recently approved for the treatment of hereditary ovarian cancer. The drug caused a 50-fold increase in brain tumor cell death."

https://www.sciencedaily.com/releases/2017/02/170202141211.htm

And link to the study:

2-Hydroxyglutarate produced by neomorphic IDH mutations suppresses homologous recombination and induces PARP inhibitor sensitivity

http://stm.sciencemag.org/content/9/375/eaal2463 

Also I did a quick search for olaparib and glioma and there are already trials with olaparib and TMZ for recurrent GBM.