Monday, 30 January 2017

PSK / Turkey Tail

I'm looking for a trusted brand of PSK / Turkey Tail for my wife and also a recommended dosage.  Thank you in advance for your help.

Saturday, 28 January 2017

The perils of in vitro drug testing

I've discussed this issue before. It comes up regularly because people often want to base treatment decisions on studies in which some drug or supplement seemed to have potent effects on cancer cells in a dish.  The problem is that the scientists carrying out these studies often seem to pay no attention to the achievable levels of the drug or supplement in human plasma or other tissues in the body with reasonable dosing schedules.  It's fairly common to see studies showing marvelous effects, without mention that the drug is being tested at 100 or 1000 times the achievable level in the body.

As a case study, here is one example:

Genistein Suppression of Matrix Metalloproteinase 2 (MMP-2)and Vascular Endothelial Growth Factor (VEGF) Expressionin Mesenchymal Stem Cell Like Cells Isolated from High andLow Grade Gliomas

"Results: Expression of MMP-2 demonstrated 580-fold reduction in expression in low grade glioma cells post treatment with genistein compared to untreated cells (P value= 0.05). In cells derived from high grade lesions, expression of MMP-2 was 2-fold lower than in controls (P value> 0.05). Genistein caused a 4.7-fold reduction in VEGF transcript in high grade glioma cells (P value> 0.05) but no effects were evident in low grade glioma cells. Conclusion. Based on the data of the present study, low grade glioma cells appear much more sensitive to genistein and this isoflavone might offer an appropriate therapeutic intervention in these patients. Further investigation of this possibility is clearly warranted."

Oh, and by the way, the study states that genistein was tested at a variety of concentrations: "variety concentrations of genestein (Sigma, UK) (0, 0.01, 0.004, 0.002 and 0.001M)"

This is actually not much of a variety of concentrations because all these concentrations are absurdly high.  M stands for molar (moles/liter).  0.001 M is therefore 1 millimolar.  The only drugs I'm aware of that even come close to 1 millimolar in the plasma are lithium and phenylacetate and maybe DCA with high doses.  Most drugs are achievable in the nanomolar or low micromolar range at best. For genistein we'll be generous and include glucuronidated genistein (the form predominantly found in the plasma which may or may not have pharmacological activity compared to free genistein).  Even still, concentrations of around 2 micromolar is about what is achievable in the blood with a single 300 mg dose.  Let's be generous again and assume that 10 micromolar total genistein would be achievable with a high dose.  The 1 millimolar tested in this study is 100 times higher the 10 micromolar achievable at best, including glucuronidated and free genistein.  In many cases the only way to match concentrations used in vitro would be high dose intravenous injection, but the safety of that would be unknown without phase 1 clinical trials.  It's possible that 1 millimolar free genistein in the bloodstream would be very toxic, and that normally non-toxic substances would become toxic at these high concentrations.

I've also seen studies testing melatonin up to 1 millimolar, whereas the maximum concentration achievable with an 80 mg dose (4 times more than most GBM patients are using) is only 500 nanomolar.  1 millimolar used in vitro is then at least 2000 times higher then what we could expect in the plasma.

These studies are very misleading, especially when read without a scientific background that can make sense of the concentrations being used (what is 1 mM?).  I do my best to bring awareness to this issue, that in vitro work can usually not be taken at face value (thinking the conclusions reached and the concentration-dependent mechanisms described necessarily have any clinical relevance).

Friday, 27 January 2017

Dexamethasone

Please tell me why this is called the devil drug?

My friend is on 6mg a day now. What are the side effects that are troublesome? My friend that I'm caring for isn't able to express things due to the GBM so maybe stuff is happening that I don't know about?

Hypermutation Risks of Temodar

Hi all,
I've found great value in this blog and am posting for the first time.

I was diagnosed in march 2016 with grade 2 oligo.  Its a somewhat larger tumor, about 7x6x5cm and unlike most oligo's is not in the frontal lobe, but is left parietal and overlapping motor, sensory and speech areas and nearing midline crossover.  Because of all that it was considered a high risk surgery zone and so I have so far only had a biopsy and have been doing chemo.   I'm IDH1 mt, mgmt meth, 1p19q codel, ATRX normal, p53 normal.

So the broad plan was chemo then RT.  The hope was to shrink the tumor to be able to reduce the RT zone. So far 6 rounds of Temodar but I have now switched over and done 1 round of CCNU after having learned more about hypermutation risks with TMZ.

I've dug thru what published data there is and its all clear as mud.  On the one hand the 2014 Science paper (Johnson et al from the Costello UCSF lab) that seems to have really launched this topic found very clear and scary linkages showing hypermutation and upgrading at recurrance to GBM in about half of the patients treated with TMZ vs none with only RT, on the other hand it was a very small data set, had mixed genetics, was clearly a selected dataset and not randomized, and only looked at TMZ alone or RT alone, not the more common RT+TMZ.  The few other studies I have found add some implications that mutations in TP53 and mismatch repair genes  increase the risk, though some data also shows TMZ driving mutations of TP53 and MSHx which then creates the path to hypermutation.

In simplified terms if chemo mutates the cancer to a point where the 'self check' mechanisms during cell division stop working then the next time the cell gets hit with chemo it will go ahead and replicate in spite of the genetic damage from chemo and create new set of mutations.

To further complicate the picture most of the historical data looking at different chemo options is comparing PCV to TMZ, but procarbazine is a monoalkylating agent that is quite similar to TMZ.  So I've gotten some input from Doc's that CCNU alone may be less mutagenic because it is a bi-alkylating agent and will more effectively stop DNA replication thru double strand breaks.

So Steven or others who are into the science side of cancer, do you have any thoughts on how to unravel all this?  Recommendations on other approaches to consider, or ways to enhance effectiveness of chemo for low grade cases?

Thanks,
Bryan

SW edited this post to include the image below, from a presentation at the 2016 SNO conference in Phoenix Arizona:





Rabies virus vaccine + deferoxamine (iron chelator) + penicillamine (copper chelator)

Following up from a recently published review ("Rabies virus vaccine as an immune adjuvant against cancers and glioblastoma: new studies may resurrect a neglected potential")  I found a study published in 2009 describing treatment of 20 glioblastoma patients with rabies virus vaccine, deferoxamine and penicillamine.

Individual outcomes of all 20 patients are reported in this paper, which allowed me to do a Kaplan-Meier analysis.  The study reported a median post-operative survival of 28 months, similar to my calculation of 53% survival at 27 months, and 45% survival at 34 months.  69% survival at 2 years.

This compares very favorably with other trials from that era which typically had median survival around 16 months and 2 year survival around 25-30%.

There isn't much information given on the standard treatments delivered (radiation? chemotherapy?), but these results are intriguing.  An earlier publication by this author from 1988 describing treatment of GBM with rabies vaccine is only available in Russian.

Rabies vaccine + deferoxamine + penicillamine study available for free at this link:
http://jbcr.mu-pleven.bg/pdf/vol2no1/8.pdf

Terminal brain cancer dx

Hello.  I have met a brain tumor twice. Once when it killed my mom in 2010 and now with my friend who is terminal.

I have found it difficult to find blogs dealing with end of life brain cancer.  So I am hoping to find commaradrie here.

Do not misinterpret me as giving up hope.  Not everyone wins the battle.  Sometimes brain cancer does.

So is there anyone out there who has dealt with a terminal dx?  You'll want to know that she has fought brain cancer for 5 years,  done chemo, radiation, and had two brain surgeries.  A gbm has taken over in her thalamus near her brain stem.  It is inoperable and not possible to receive chemo.

In late November 2016 she was given 3 to 6 months.   So we are 2 months in to the 6.  She is under hospice care and lives with me and I care for her.

My questions are....is anyone dealing with the same thing?  She can still walk and talk.  She is still awake more than asleep.  She does get moody.  Her appetite is good.  It does seem that she never sleeps deeply.  She has struggled through constipation due to the opiates but I think I've figured it out.   She claims the meds don't work and is at a level 8 pain.  She'd be curled up and crying though....right?  I try every 3 days or so to give her a quality of life day....like swimming or a movie or a restaurant.  Otherwise it is bed to couch to shower to couch to bed.

Hope to hear from someone.

Thursday, 26 January 2017

Salivex= Nabiximols

I need your advice. We are looking for medical marihuana and  will get it but it takes time.At the moment we can get Salivex /Nabiximols/. It says THC CBD ratio is 1:1. Is it worth getting this one while waiting? Thanks a lot!

Wednesday, 25 January 2017

How common is it for GBM to metastasize to other parts of the brain?

Post SOC Advice

Thank you very much Stephen for allowing me to post my question here.  I've been reading this wonderful blog for awhile and I'm hoping to receive some guidance.  My husband 59 was dx with GBM (left temp) in March of last year.  He had surgery to remove 80-85%, received 30 Proton therapy treatments with TMZ, then 6 rounds of TMZ (5/23 schedule).  His follow up MRIs have shown swelling (the NO is calling it treatment effect).  He has just finished SOC so I'm looking for suggestions to look for potential trials and things we can do ourselves to keep from recurrence. His pathology is below and it is difficult for me to understand what we should be pursing.  We are mostly happy with his care but want to be as proactive as possible.  He is also on Keppra 1000mg 2x per day, Tagamet 200mg 2x per day, steroid 4 mg AM, 2 mg PM.  We eat mostly organic, no sugars, and try to limit dairy.  I also would like to incorporate more of the cocktail approach but I'm not sure what to try based on his pathology.  Any suggestions would be greatly appreciated.
There is no
immunoreactivity for mutant IDH1(p.R132H). p53 stains the nuclei of a
relatively small subset of tumor cells, which also retain nuclear ATRX
expression. Reticulin special
stain shows low reticulin content.
Methylation specific PCR analysis of the MGMT (O6 methylguanine DNA
methyltransferase) DNA repair gene promoter is in progress and will be reported
as an addendum  (he is not methylated)

NEGATIVE- FISH result for EGFR gene amplification
NEGATIVE - FISH result for loss of 10q/monosomy 10

EGFR FISH
In
this particular case, there was polysomy of chromosome 7 in 61.5% of the 200
interphase nuclei examined. The average copy number of CEP7 was 3.01 (ranging
from 1 to a high of 8 copies). The average copy number of EGFR was 3.16
(ranging from 1 to a high
of 8 copies). The resulting ratio of EGFR to CEP7 for this case was 1.03. There
was no evidence of EGFR gene amplification, as defined below, in the 200
analyzed cells.
In glioblastomas, the cut-off point that defines amplification is controversial,
although the most commonly accepted criterion for EGFR amplification is an
EGFR:CEP7 ratio of = 2.0 (Appl Immunohistochemial Mol Morphol 14:91-96, 2006; Am
J Surg Pathol

PTEN FISH

There was no evidence of PTEN deletion or monosomy of chromosome 10.

My niece keep fighting with GBM. Last 3er January  did new MRI and we are waiting for the result but with the hope that the MRI were well (for some anticipated information)  ..
She has GBM no methilated and we think that temodar is not so effective in this cases. She had a second operation after first operation and treated with temodar. We read about Avastin that is very hopeful.

She started taking a non toxic cocktail of drug (curcumine, fish oil, Melatonina, PSK, Spirulina, Green te, vitamin C, D3,K2, resveratrol, etc) and Savitex with THC y CBD. She doesn't have any medical supervision about the cocktail. After a radioteraphy and little period of rest, she again is taking chemotherapy (temodar) and we think to add others drug (a little bit more toxic) that we read are good to fight against tumors, but we are scared about its interactions. We think to add Chloroquine and Celebrex (celecoxib). 

Do you think it’s a good option to join THC and CBD with Chloroquine and Celebrex?. I read about the moderate interactions between Chloroquine and Celebrex, but I didn’t read anything clear for me about THC/CBD and Chloroquine or Celebrex.
Please could you help us about your experiences? We would appreciate any  information. Thank you very much.

Sincerely, Jose MÂȘ


JMRT

Tuesday, 24 January 2017

Intravenous Curcumin?

Any one has experience with this?

Help in moving forward with 20 year old son diagnosed with Grade 2 Astroscytoma



Thank you Stephen for the invite, and thank you to this community for all information gathered here, and Astrocytoma Options, regarding my sons recent diagnosis of a Grade 2 Astrocytoma.

This is all very overwhelming, in processing a lot of information, in a short period of time, while making decisions regarding treatments and such.

My son Brett, had a bad seizure on Christmas eve morning while playing football with his friends. Fast forward, he had surgery the following Friday, December 30th. His tumor was located on his right frontal lobe(cerebral), apparently just over 4 centimeters.

Post-op MRI report stated a full resection, however the Neurologist who preformed surgery said that he feels as though a piece, possible the rim of the tumor remained. When discussed with the tumor board, the over all consensus of the group, agree with him. Being that is it a slower grower tumor, that are allowing his body to heal, and have scheduled his next MRI next week, to further review.

We met with his Neuro Oncologist yesterday to go over his pathology report. Which is where I am seeking advice. Trying to stay positive through all of this, I felt like a UFC fighter kicked my in my stomach when I learned that his tumor is IDH1 negative, 1p/19q not co-deleted(none detected), his TP53 mutation: Present, 60 percent of nuclei stain positively by immunohistochemistry.

We have an appointment at UPenn Thursday afternoon for a second opinion. Do you have any recommended questions, regarding anything? I am starting to feel lost. From what I have read(very carefully), prognosis is quite favorable with IDH1 mutated, co-deletion in tact.

She offered us a treatment of radiation w/ Tremodar, or radiation 5x's a week followed by a restrictive diet chemotherapy, Matulane, Lomustine, Oncovin. She does not lean one way or the other. The choice is ours, however, she stated that statistics back up the second suggestion. I read that combination chemo and radio are best.

Please forgive me for throwing this all out there, I'm writing in my car while picking up my 12 and 14 year old from school. Absolutely and advice would be much appreciated!!

Sincerely,
Marlena

Monday, 23 January 2017

Hydrocortisone VS Prednisone

My husband, diagnosed May 2015 with left frontal lobe GBM, had been using dexamethasone but the side-effect were becoming too severe even though he was down to 2mg per day. His arms easily bruised, bleeding from thinning skin. Does anyone here have any experience with Prednisone or hydrocortisone? Since Dec. 1, my husband started taking prednisone but he seems to get quite irritable even on 7.5mg. A friend, who happens to be a neuro-onc visiting from Scotland, recommended switching over to hydrocortisone.  Our UCLA neuro-onc recommends that we see an endocrinologist, but that's harder to find than you would think. Any conflicts with other off-labels meds or supplements? Thoughts?

Friday, 20 January 2017

Re-evaluating sildenafil (Viagra) in GBM cocktails

A recent study published in Oncotarget calls into question whether PDE5 inhibitors like sildenafil are a good idea for GBM after all.  The study is called Type 5 phosphodiesterase regulates glioblastoma multiforme aggressiveness and clinical outcome. (click on title to redirect to the article).

The two main reason it has been included in GBM cocktails are for 1) proposed blood-brain barrier opening effects and 2) inhibition of immune suppressor cells as seen in mouse models and for other PDE5 inhibitors (tadalafil) in human studies.

This new study however, identifies high PDE5 expression in GBM as a positive prognostic factor. First, in a series of 69 GBM patients, high protein expression of PDE5 was independently associated with better survival in a multivariate analysis which included EGFRvIII expression, age, KI-67, KPS, MGMT status, and PDE5 protein expression.

This finding was validated in two additional GBM cohorts from "publicly available gene expression datasets".  In these GBM datasets, high expression of PDE5 mRNA was likewise associated with improved survival.   Recurrent tumors tended to have lower PDE5 expression than newly diagnosed tumors.

Cell line studies showed that PDE5 knockdown increased the invasiveness of cell lines and enhanced the survival of GBM cells following irradiation.

Although it's not clear how much sildenafil actually gets into a brain tumor to exert direct effects on PDE5 in gliomas (myself and others had been promoting sildenafil for potential indirect benefits on immune cell populations and BBB permeability), this study will certainly make us think twice about PDE5 inhibitors as a therapeutic strategy for GBM.




The methylenetetrahydrofolate reductase (MTHFR) variant c.677C>T influences overall survival of patients with glioblastoma multiforme


This was a 2008 article published in Neuro Onc 10.1215/15228517-2008-020.  PMCID: PMC2666227.

From what I gather, the C/T (C677T) A/C (A1298C) genotype (Greatly Reduced Activity, GRA) of the MTHFR gene is a risk factor for survival in GBM. C/C is considered normal. 

I did test our survivor for the MTHFR gene and he has the C/T polymorphism noted above.  It should be noted that this polymorphism is common in the general population.  

Individuals with the GRA MTHFR type mutation are expected to have greatly decreased folic acid metabolism and low folate levels. 

The authors of the study concluded that "folate supplementation or dietary strategies influencing methionine and further metabolites of methionine metabolism might be interesting candidate supportive therapies for GBM patients".  There is a product on the market known at L-methylfolate or Metafolin and also marketed as Deplin 7.5 mg or 15 mg.   Supplementing with regular folic acid would seem to be much less effective if one does not have enough MTHFR to convert folate to its active form that can pass the blood brain barrier.  My question is if anyone has any further information or experience with L-methylfolate supplementation in their BTcocktail. 

Thursday, 19 January 2017

Agenus vaccine (HSPPC-96) plus pembrolizumab (Keytruda) for new GBM

We've just heard that UCLA will be starting a trial combining DCVax with nivolumab.
NCT03014804   (disregard the references to a "lung tumor" vaccine.  This is a GBM trial and those references were a mistake which should be fixed soon.


Another trial will soon be opening for newly diagnosed GBM testing the Agenus Prophage vaccine (HSPPC-96) in combination with pembrolizumab.  This is a randomized phase 2 trial and unfortunately one arm will be treated with standard of care + pembrolizumab + placebo, while the other arm gets standard + pembrolizumab + vaccine.

Another trial of HSPPC-96 for newly diagnosed GBM reported some results at ASCO 2015.  Patients with high PD-L1 expression had median survival of 18 months, while patients with low PD-L1 expression had an amazing median survival of 44.7 months.  There is thus very good rationale to combine this vaccine with a PD-1 inhibitor such as pembrolizumab.

New disulfiram trial in Sweden

DIRECT (DIsulfiram REsponse as add-on to ChemoTherapy in Recurrent) Glioblastoma: A Randomized Controlled Trial

This is a randomized phase 2/3 trial with an expected recruitment of 142 patients recruiting in Norway and soon to be recruiting at multiple centers in Sweden.

One arm gets standard alkylating chemotherapy at recurrence, and the other arm gets standard chemotherapy plus disulfiram and copper.


Wednesday, 18 January 2017

Cannabinoids question

hello everyone. Is there any value in taking a CBD only oil? This is now legal in Ireland, presumably because there is no THC present.  If so what would be the recommended dose?
thanks
Anne Marie

Chloroquine dose for EGFR Amplified/EGFRvIII positive GBM

Hello all, I just also reviewed this 1/17/2017 article regarding GBM and Chloroquine (https://www.sciencedaily.com/releases/2017/01/170117084050.htm) and there seems to be some efficacy with Chloroquine use in BRAF mutation positive GBM.  In our case the BRAF mutation was not detected and I'm wondering if CQ would still have a place in our cocktail in the absence of this mutation.  

However, as was pointed out on this blog, retrospective studies have indicated Chloroquine as being particularly effective in EGFRvIII positive GBM, which is the case with our GBM. I also noted clinical trials going on using CQ in GBM, but could not find any prelim data.  We just finished cycle 2 of TMZ and want to add Chloroquine to our cocktail right away.

Does anyone have an idea regarding the dose (mg) and how it should be taken? (one a day? twice a day? only during the 5/28?  Regards,

Stephen W edited this post to include the following image:





Recent paper on GBM and Chloroquine

We're not been able to use chloroquine ourselves for a while, especially since we've been off TMZ for so long. Still, interesting revisiting of it:

https://www.sciencedaily.com/releases/2017/01/170117084050.htm

Monday, 16 January 2017

From Musella's website: Immunotherapies for GBM: Tumor Vaccines by Linda Liau, M.D., Ph.D., M.B.A.

Immunotherapies for GBM: Tumor Vaccines by Linda Liau, M.D., Ph.D., M.B.A.         This is a video about the DCVax trial, given by one of my all time favorite brain tumor doctors, Dr. Liau.  This looks very promising. We are hoping to hear the results of the big phase 3 trial soon.  In the earlier trials and in the early progressors which were excluded from this trial but were followed as they took the vaccine,  about 25% of the patients went on to be long term survivors, with many alive and progression free 5-10 years later.  That is unheard of with the standard treatments. Some other immunotherapies have also reported similiar results (although not as long follow up).    We are hoping this large phase 3 trial shows something close to that so it can be approved quickly and all patients can benefit from it.  Best of all it had no serious side effects. Dr. Liau is on the Musella Foundation Medical Advisory Board.  The Musella Foundation has supported Dr Liau's immunotherapy research with $375,000 in grants and we have never received any financial  support from the company developing this treatment, Northwest Biotherapeutics.

What else would you do?



On 08/29/16 my 41-year-old brother in perfect healthy suddenly presented with a massive headache which ended up as a 5-cm R frontal GBM (+MGMT; wtIDH, EGFRvIII amplified, PD-1/PD-L1 negative, HLA A*02:01 negative), 90-95% resection on 8/31/16 at Cedars-Sinai, remainder 5-10% abuts the ventricle, Caris & Foundation testing done, did not qualify for or declined upfront clinical trials, started w/ stupp protocol w/ in 4-weeks after surgery, but upped radiation dose in week 5 of 6, 1st MRI showed stable findings but new nearby tiny satellite lesion seen, Keppra for first 2-months, 2nd cycle of TMZ completed yesterday (1/16/17), 7-week delay between TMZ cycle 1 & 2 due to a 2.5-week experimental T-cell / stem cell immunotherapy out of states, added Nivo (Opdivo) during the end of RT & going on 6th infusion now (insurance not covering), starting Pomalyst this week (pending insurance approval), Optune ordered end of Nov 2016 but still delayed due to insurance denial, started high dose Vitamin C infusion 10-days ago and working up to 100 g, CBD/THC oil 1:1, life-style modification, difficult to follow restricted ketogenic diet, has had no seizures and no requirement for steroids beyond the post-op taper, tolerating treatment very well, has no symptoms, labs are normal, and only neuro deficit is subtle mild cognitive impairment. MRI last week had not changed but most likely viable tumor tissue seen, hoping it is pseudo-progression, awaiting result of second liquid biopsy.  Inquired and/or consulted with Duke, MD Anderson, UCLA, CSMC, NIH, Dana Farber, Cleveland Clinic, Hoag, UCI, USC and some international sources, in addition to attending SNO 2016, but walked away with very little.  So we started our own prescription drug cocktail early on and have kept adding.  Did pharmacogenetic (PGT) testing and do frequent labs to monitor for drug-drug interaction.  Current NO has no objection to the cocktail and in-fact recommended a few on the list.  Current cocktail includes:

- Valcyte 450 twice daily
- Celebrex 200 mg twice daily
- Metformin 500 mg twice daily
- Imipramine 100 mg at bedtime
- Mebendazole 100 mg twice daily
- Livalo 4 mg daily
- Ondansetron 8 mg as needed for nausea
The non-Rx part of the cocktail includes (still trying to fine tune the dose)
- CBD/THC 1:1 oil
- Coconut oil
- Ashwagandha
- Turmeric (curcumin)
- Boswellia serrata (Indian frankincense)
- L-Proline
- L-Lysine
- Selenium
- Zinc
- Resveratrol
- Tart cherry
- Colloidal silver
- Green tea extract and will be adding Melatonin 20 mg

Will be doing an early follow-up MRI 3-weeks from the last one on a 3-Tesla w/ DTI, spectroscopy and perfusion weighted, for whatever it is worth.  Meanwhile, trying to be proactive and need to start considering options in case of “recurrence” as will be excluded from most trials since we’re already doing immunotherapy.  Thinking of adding intravenous Resveratrol and Curcumin infusion which I just found got my hands on.  Was thinking of adding Yervoy but hesitant given potential for serious side effect in combo w/ Nivo.  Hope our path ends up helping you and truly appreciate all of your guidance and feedback. 

Sunday, 15 January 2017

Off label drugs for astrocytoma grade 3

We are looking for repurposed drugs for a family member and since most of the research has been done for GBM that is grade 4 tumor I wonder if there is anything to take into account while treating a grade 3 tumor. I once read somewhere, but can't remember where and how reliable this source was, to be careful with cytotoxic drugs for lower stage cancer as they may cause the tumor to develop to a higher grade. Could you let me know what are your opinions on this? What type of drugs would you chose or have you chosen for lower grade tumors? Thank you.

Saturday, 14 January 2017

Start DCA while on dex?

So, I have DCA in the freezer, ready to use.
Bought from PureDCA.com.
They recomended  600mg dca + 375mg of thiamin TWICE daily for 80kg man. My husband now is 84.6 kg.
Not sure if he can start DCA (sodium version) if he is on 7mg of dexamethasone and thus should have low sodium diet.
He currently does not have any treatment. 
Last DC vaccine was on 31st November 2016. 
SPMF treatment ended on 12th October. Were told that therapy 'lasts' for another three months (forgive me my imperfect English).

Current drugs:
Dexamethasone 4-3-0 (mg)
Omeprazole 200-0-0
Levetiracetam 750 mg1-0-1 
Endoxan 50 mg1-0-0 (cyclophosphamide)
MGN-3 1000 mg1-1-1 (shitake powder)
Rytmonorm SR 325 mg1-0-1 (propafenonum for heart)

Supplements:
Vitamin D 5000 UI0-1-0
Vitamin C 1000 mg0-1-0
Caltrate Plus0-0-2 (calcium)
Magne B61-0-1 (magnesium)
MarineOmega1-0-1 (omega 3)
LifePak1/2-0-1/2 (multivitamine)
Cordyceps2-0-2
Reishi 

We also plan to start applying 25% DMSO gel from Jacobs labs topically on his head.
(We hope to decrease his significant edema in the brain.)

Any advice on DCA start/not to start/when will be much appreciated.

Husband has all kinds of side effects from dex. Started higher doses on September. Moon face, insomnia, big abdomen, myopathy, osteopenia...

God bless,
Hana

Friday, 13 January 2017

Cronaxal

Has anyone tried Cronaxal or might have any info regarding whether it is worth trying? Thanks
http://www.cronaxal.com


Unmethylated treatment advice

Hi,
My beautiful husband had removal of GBM left parietal tumour last October.
Histopatholgy results:
The sections show multiple fragments of hyper cellular brain parenchyma, diffusely infiltrated by tumour composed of hyper chromatic and atypical glial cells, set in a fibrillary background.   The glial cells have a broad morphological spectrum which includes scattered epitheloid forms with abundant pink cytoplasm and smaller glial cells with a high nuclear to cytoplasmic ratio. Frequent mitotic figures are present including atypical forms. Multiple foei of palisading tumour necrosis and microvascular proliferation are seen.
ATRX: retained 
IDH1 (r13211) immunonegative
EGFR; strongly and diffusely positive
P53: positive in approximately 30% of the tumour cells
Ki67 prolification index: approximately 20%
Unmethylated 
Glioblastoma IDH-wild type grade 4 

After surgery we have commenced veliparib  + radiology.
We are now on a break and due to commence veliparib + temozolomide in about a week (6 month treatment:one week on tablets ; three weeks off)
Current supplements
Curcumin 
Silymarin 
PSK
Selenium 
Vitamin D
Multivitamin 
+ Ketogenic diet 

Because we live regionally (in Australia), we are now assigned a local oncologist (not neuro-oncologist).  This VERTU trial is the only offered treatment.  The oncologist is reluctant to discuss other options/supplements.
The registered nurse overseeing the trial said that if I approached the doctor and asked to add a medication they would consider it, so we have an appointment next week that I have an opportunity to put a case forward for other treatment, hence I am asking for advice.

Question: should we be pushing for Keppra?  

Question: should we be looking for other treatment... I am not hearing much of anyone on veliparib.

Question: Please advise if it would be beneficial to add artemisinin to the supplements, and if so how will that work with the veliparib  + temozolomide 

Question: Do you have any other recommendations for supplements?


Thank you in advance for any assistance.
And I also thank you all for writing on btcocktails  and sharing stories and knowledge... It makes me feel not so alone.




Saturday, 7 January 2017

dendridic vaccine plus virus

Dear all,
we are planning on getting the vaccine with Van Gool for my 17-year old pretty soon. I know he is using  Newcastle virus with it, but I wonder if this would be the most effective/aggressive option. I have seen mixed reports on its efficacy, so I wonder if tetanus shot or Hilton would be a better option to add to the vaccine. From what I read, tetanus seems a lot more effective. As much as I trust Van Gool's expertise, I still can't fully put my faith into any one treatment if there is a possibility of something working better. I am sure Van Gool would insist on his approach, but I wonder if this is because he truly believes it is better tan others ( such as tetanus) or because this is the only protocol they use at the moment. Would anyone have an opinion on that? Thanks!

Thursday, 5 January 2017

PLK1, IDH1, and Genistein


Came across this study on sensitizing IDH1 mutant tumors to TMZ.  Inhibiting PLK1 sensitized mutant IDH1 gliomas to TMZ in mice.  

PLK1 INHIBITION ENHANCES TEMOZOLOMIDE EFFICACY IN IDH1 MUTANT GLIOMAS

They used the small molecule BI2536 which is not currently available outside of clinical trials.   However, I did find a 2016 study on Genistein (which is available retail) and its possible inhibition of PLK1.


 Sensitivity of TP53-Mutated Cancer Cells to the Phytoestrogen Genistein Is Associated with Direct Inhibition of Plk1 Activity.


Some more info on Genistein here as well.

DMSO

Dear friends,

Anybody having experience with DMSO?
http://www.lifeextension.com/magazine/2007/7/cover_dmso/Page-01
Concerning brain swelling and also killing GBM?
I also saw succesful story of one Czech guy using CDS2 with DMSO as spray on his head?
Wondering wether such usage also can be effective.

Thak you,
Hana

Tuesday, 3 January 2017

Fasting during chemo cycles?

Hi all,

As there is some evidence in mice studies that fasting can be beneficial during chemo cycles, both sensitizing the tumor cells and protecting the regular cells I'm wondering if anyone here has tried it?

If yes, would you be willing to share your experiences?

How long time did you fast? Did you see any direct benefits? Any negative effects? How easy was it to tolerate fasting while taking chemo?

Grateful for any feedback.

Thanks