Saturday, 30 July 2016

Prioritization schema for immunotherapy clinical trials in glioblastoma

This looks like an important paper by a number of heavyweights in neuro-oncology, though I haven't read through it yet.


I will upload it to the Library (folder 3, Immunology and Immunotherapy) now.

Thursday, 28 July 2016

New to GBM

Hi, my first post here so I hope I'm doing this right.  My husband was diagnosed with GBM on June 13th of this year...on the day my baby turned 8 months old.  One night when he was working late at home, he started having chills and feeling cold and started having a seizure in bed while we were sleeping.  He had 3 seizures that night and went to the ER and a mass was detected on his scans in his right parietal lobe.  He had surgery the very next day and the neurosurgeon said it was 99% removed.  At the time, they detected something else on the scans in his right temporal lobe...(I believe it was his first scan at the ER) that showed something, but they couldn't give us a definitive answer of what it was.  They said it could be swelling, but based on most recent scans, the NO said he thinks it's progression and that if it is, it's most likely inoperable and they will know for sure after chemoradiation is over.  I'm scared to death about the new find, although he suspects that it's not as aggressive as the one that was removed.  I'm not sure what he means by "progression" if it was there from the first scan and not as aggressive.  Wouldn't it be more appropriate to call it as another tumor rather than progression from his first tumor?  Am I not comprehending things correctly?  I ask this here as I am never able to accompany my husband to his appointments as I have my infant son and another 8 year old son and I don't have anyone to watch them.  I feel really helpless at times and focus whatever free time I have looking up what supplements and diets could possibly help him.  My research, however, is often not thorough as I am constantly interrupted by an unsleeping baby and an active 8 year old.  I'm hoping you wonderful members/contributors could help me out and take a look at the list of supplements I have compiled so far.... It's been a work in progress as my research evolves and I have taken out some, only to add others.

From what I can make out of his pathology report, my husband is MGMT unmethylated and IDH1 and IDH2 negative.  My SIL, who has been taking him to all his appointments, has sent in for Foundation One report so we are still waiting on that.

But this is what I have so far for my husband.  Please let me know if there is anything that is unnecessary as I feel bad that my husband has so many pills to take all throughout the day.  Also if there are any I should add and if my dosage should be increased, etc.  I would ever so appreciate it!  I was attempting to put him on a Ketogenic diet, but I'm too afraid to attempt as he has already lost some weight.  He went from 200lbs down to 185, which is still an average size, but he seems to have lost some muscle.  I am waiting for my Wokvel Boswellia extract to come so I can add that to his list as well.  If I add this, would it be safe to take out the Dex?  Right now I am putting him on a mostly organic diet with fresh veggies/soy/chicken and avoiding nuts because of Omega 6 and sugars and white starches.  I also wanted to add that my husband is going on week 4 of chemoradiation and has been getting good blood count results and has been able to work every day from morning till 4-5pm. Thank you so much if you are reading this!

Rx meds
Taken w/o food
Dexamethasone 20mg (1) 8AM
Famotidine 20mg (1) 8AM
Losartan 100mg   (1) 8AM
Levetiracetam 500mg (1) 8AM/ (1) 8PM
Zofran (1) 8PM
Temodar (2) 9PM

Taken before a meal:
Berberine 500mg (1) 8AM/ (1) 5PM
Longvida Curcumin 500mg (2) 8AM/ (2) 5PM
Resveratrol 500mg (2) 5PM

Taken w/o food:
Life Extension Milk Thistle 750mg (1) 8PM
Melatonin 5mg (4) 9PM

Taken with food:
Red Reishi Mushroom 500mg (2) B (2) L (1) D
Fucoidan 310mg (5) B (5) L (6) D
Mushroom Science PSK/PSP 500mg (2) B (2) L (2) D
Mushroom Wisdom Maitake D Fraction Professional Strength (2) B (2) L (2) D
Green tea extract 750mg (1) B (1) L (1) D
Omega 3 Fish Oil 1100 mg (1) B (1) L (1) D

Life Extension Pteropure 50mg (1) B (1) L
Life Extension Soy 135mg (1) B (1) L
Vitamin D3 10,000IU (1) L
Life Extension Mega Lycopene 15mg (1)L
Probiotic 46mg (2) L
True Veda Ashwagandha 300mg (1) L

Hi... So my dad just had his first recurrence after being on Avastin for about 4 months. The tumor is spreading quickly and he seems to be rapidly declining. His oncologist said there's nothing more they can do. I say F* that. He's a big guy, so my mom needs help. He's 64, which makes him ineligible for Medicare (we're in the U.S.), so the doctors are recommending in-home hospice care. (My mom doesn't want to send him to a nursing home.) My brother and I think that we should try Temodar again or Optune, but with in-home hospice care, my dad is not eligible for treatment. Does anyone know any way around this issue? Thanks in advance for your help.

Wednesday, 27 July 2016

Rest peacefully Dad.

So it is my turn at last.  My father, Allen Spencer Scates, passed away peacefully in his home on Thursday July 21st.  His death was actually very nice, if you can say that about a death.  Both of his sisters made it in time from out of state to say their goodbyes.  When he took his last breath he was held by my mother, which is what he would have wanted.  I think the hardest part in this journey for me was the diagnosis and immediate months to follow.  I hope that can comfort some of you.

As others have done, I would like to 'pay it forward' with our remaining meds.  I have Temodar, Depakote - 500mg, Keppra - 500mg, 750mg, 1000mg, Dex - 4mg, Verapamil - 180mg ER, Disulfiram - 250mg.  I'm sure there are more supplements and things but I haven't dug through yet.  Please reach out if you would like any of these.  I also have a login to the entire Truth About Cancer series.  I bought the whole thing but it's still in the box so no idea if its of any value.  I'm happy to share the login to watch it online.  All I ask in return is that you share anything you gain with this group.

My sincere love to all of you and what you are going through.  This group gave me hope and strength.  I plan to stay in touch and track your journeys.  I will be rooting for you.


Dad's 63rd birthday last year, and my wedding in 2008.

Tuesday, 26 July 2016

Any ideas as to what could be wrong?

Hi all. My dad (62 yr old male) diagnosed 4/16 with GBM in left temporal lobe. Surgery at UCSF with full resection and then 6 weeks radiation and temodar at local hospital. Was also doing a very light cocktail mostly supplements and cannabis.

Extreme fatigue and bad nausea began around week 4 or 5 of treatment but was manageable. Finished treatment last Monday and has since been feeling worse each day.

On Saturday he became very confused, messing up words, not knowing peoples names. Sunday took 8mg dex as local oncologist thought it could be swelling. No improvement, up all night, Monday morning SEVERELY agitated. Went to local hospital and was admitted. At this point he was hallucinating and hearing things. They did an MRI and the analysis said:

Scattered small T2/flair bright foci are randomly scattered in the periventricular white matter, not significantly changed.

Abnormal signal in the left mesial temporal lobe and uncus. Suggest correlation for encephalitis possibly herpes orgin

Chronic ischemic small vessel white matter disease, not significantly changed.

They are now testing him for an infection? No one seems to really know whats going on and he is soooooo miserable, still very confused. I"m waiting to hear back from his doctor at UCSF but in the meantime I was just wondering if any of you guys have any idea what could be wrong??

Universal cancer vaccine.

I found out that unifontis started to offer universal cancer vaccine. What are your opinions of it? It is about 4 000 euro per shot.

Monday, 25 July 2016

Slowing down glioblastoma progression in mice by running or the anti-malarial drug dihydroartemisinin?

This new study from Heidelberg (Wick et al.)  is the first orthotopic mouse GBM study I've seen with dihydroartemisinin (the main metabolite of the artemisinin compounds), although this was injected rather than give orally to the mice.

Also this is the first study I've seen showing exercise can improve the therapeutic effect of temozolomide.

Click here to view the study

Saturday, 23 July 2016

Tocagen, a Mission Beach biotech company, is using immunotherapy to kill brain cancer cells,(Published Wednesday, July 20, 2016)

Has anyone seen this clip? I found it on the Musella site.

They are looking for more people for the next phase of their trial. Since my husband's tumor is inoperable, I'm assuming that he wouldn't qualify based on the news report but others might.

My husband - introduction

Dear all,

In August 2015, my husband (he is 35) had terrible headaches, his vision was affected,  then left side weakness. So went to emergency and two tumors were found. In frontal lobe 64x41x54mm and in basal ganglias 16x22x15mm. The bigger one was resected and the smaller one was inoperable. 

After month he had radiotherapy with concomitant temozolomide.
After around two weeks after the RT he got hydrocephalus. 
Was given shunt, then got meningitis, shunt was removed. Fortunately, now he does not need shunt.
Whole December in hospital, he was in the intensive care unit with meningitis reaching CRP 300.
He survived.

After that he started taking Valcyte. He is not taking any chemotherapy, because for MGMT unmethylated Temodar would not work much.

His biopsy is:  GBM grade 4, GFAP posit, Olig2 posit, IDH1 negat, IDH2 negat, p53 wild type, Ki67 25%, MGMT unmethylated, EGFR not mutated, KRAS not mutated.

Now briefly:
The smaller tumor got bigger and bigger and was operated 18.7.2016. It turned out to be mainly cyst (doctors surprised), with only really small areas shining (being active). Right now he has 32mg of dexamethasone just after the operation.
The leftovers from bigger tumor - got now very very aggressive, it is diffused, inoperable. And I think there is not much time now left.

My questions:
1. which supplements I can give him here in hospital while on high does dexamethasone?
2. which supplements, drugs would you advise to add to our protocol to which we want to return when he is at home again?

Prescribed drugs:

Then he takes (will give precise mgs when at home):
ReishiMax Glp(Nuskin) - 3 times higher recommended dos
Cordymax  (Nuskin) - 3 times higher recommended dose
LifePak (Nuskin) - multivitamin
MarineOmega  (Nuskin) - recommended dose
Curcumin  (LifeExtension) - 3 times a day
Boswellia (300mg) - 3 times a day
Resveratrol 250mg (250mg trans-resveratrol, 100mg Quercetin) - 2 times a day
Melatonin - 5mg before bed (will increase this to 10mg)
Chlorela - 2x a day
Serapeptase -2 capsules early in the morning
Vitwmin D - 5000 UI once a week
Rick Simpson protocol (should we stop it as we will start with DC vaccines?)
Banerji protocol (Ruta + Calcarea)
Carcinosin 200C
peptides (whole content not revealed) for immune system
peptides with reishi, cordyceps and more (not revealed to us)
Epiquercican (Dr Rath) - 3 capsules a day (lysin, prolin, arginin, EGCG, ..)
avoiding sugar, restricting meat
Can we add milk thistle?
Can we add aloe vera?

We were in Lithuania more than month ago. DC vaccines are ready from my husbands blood (not from his tumor). Day before first DC vaccine he will have tetanus shot to increase the better outcome of DC vaccines.

We also started to cooperate with one scientist at the oncology institute, he now has samples from his tumor. He is expert on mesenchymal stems cells and vaccines and nanoparticles, so we hope to get to some state-of-the-art treatment too.

Any help will be much appreciated. 
Wishing you all lot of strength in fighting this beast.


Friday, 22 July 2016

PD1 inhibitor and immune stimulating supplements

Is there any reason why  pd1 inhibitors and immune stimulating supplements like various mushrooms supplements  shark live oil  and avemar shouldn't be used together.

Not so great MRI

 Alan's latest MRI showed progression. We are looking at a PD1 inhibitor. Can anyone tell me the difference between Keytruda and Nivolumab? Anybody with thoughts or experience with Gamma Knife.? Alan has only had the basic testing and is unmethylated and IDH1 negative.
The oncologist wants to stop avastin and start Keytruda but doesn't want to do them together. I read some data a while back indicating that if you stop Avastin when there is progression that the tumour grows extra fast . Oncologist says that is not the current thinking. Stephen do you have any information about this.

Thursday, 21 July 2016

Brain stem glioma cocktail

Hi, All!
My 6 years daughter has diagnosed brain stem glioma. Operation and biopsy are not possible.
Standard radiotherapy + temozolamide did not help. In the near future there will be another chemotherapy course: avastin + irinotekanum.
I have read almost everything on the site and have a mess in my head. Could anyone recommend a cocktail for my case?
The main questions:
1. Most of drugs are not permitted for children "officially". What drugs are really should not be used by children?
2. Dosing for 6 years child.


Wednesday, 20 July 2016


Readers of the blog may be interested to know I was included as co-author in a review article on adult brainstem gliomas that was just published online in Frontiers in Oncology. My very first journal publication...

First MRI. Tmz or avastin?

Hi, all!
I need advise about what to do...
First mri of my husband Vadym is 1 month afret radiotherapy with chemo.
Ans about this mri there are different opinions of NO.
First opinion is there are radiation gliosis and we have to start our first cours of TMZ. ( neurosurgeons).
Second opinion is tumor is growing and we have to start avastin 5 mg/kg per day,  and after 4 injections we have to repead mri ( experianced NO).

We have no analisys of tumor ( methylation).
We were going to make first cours of tmz and after go to Germany for immunotherapy and so on.
May i ask about opinions about our situation?

Tuesday, 19 July 2016

I just want to let everyone know that my daughter Debra is doing very well after the Pulmonary Embolism. She is home from the hospital and back to about the same activities. She will be one blood thinners for at least 6 months. I did research several clinical trials and it does appear quite common to accept patients whom had DVP or PE on trials as long medical management is working.
I am surprised that none of her doctors have ever mentioned the higher risk for blood clots (7 times) for all cancer patients and that this is even higher for Pancreatic and Brain cancer patients.
I recommend that everyone educate themselves as to the symptoms of a blood clot. Thank God that Debra recognized something was seriously wrong and went to the ER at 3 a.m.!

Continue Valcyte or not...

Hi All,
My brother has been taking Valcyte for 22 months. Today after a great MRI result his oncologist has suggested stopping Valcyte.
What are your thoughts?
Best wishes, Lisa

Monday, 18 July 2016

Temodar... Hospice... What to do...

Hi -

Dad has declined.  Last week we had lots of activities, and I think it was too much for him.  Tuesday was our 3rd dose of Nivolumab, Wednesday was a visit with the NO (a 5-6 hour ordeal roundtrip), and Thursday we had our Optune hat arrive.  Dad removed it 6 or so times that night before Mom gave up for the time being.  Dad has been sweating much more than ever before and had difficulty holding his head upright at the NO's office, Mom had to cradle his head.

Just this week his breathing is laborious and he had a bit of a rattle, but the rattle seems to have gone away.  He is now sleeping and has been all day.  His blood oxygen is only 85% - which is a drop from our usual 97-98%.  Otherwise his vitals seem good.

Our background:  Dad had 1 round of Temodar last Sept/Oct during radiation, became impaired (couldn't walk, speech worsened), local Oncologist assumed the Temodar wasn't working and switched us to Avastin.  In hindsight, his tumor did not progress and the radiation was hitting the motion strip of his brain - it is entirely possible that he DID respond to the Temodar, and that the symptoms were due to the radiation.  NO at UCLA said that as the tumor did not progress this is likely.

Late May, after 6-7 months of Avastin as a monotherapy, (+ cocktail including DCA, etc) Dad's tumor had it's first increase.  Another local Oncologist said we could revisit Temodar since we never tried the maintenance dose.  Dad received 1 round of the 5 day Temodar - it was well tolerated.  While this was going on our application for Nivolumab was approved.  The Onc then said to stop Temodar and just do the Nivolumab (this was not a NO, just a regular Onc).

We then saw our NO and started the process of getting an Optune hat.  The NO weighed in and said that we could try Temodar + Optune, in addition to the Nivolumab, but wanted to wait a month until Dad's had time with the Optune so as not to change too much at once and have so much toxicity in Dad's system.

Dad won't wear his Optune. I am thinking of maybe trying the Temodar on a metronomic dose schedule, as we happen to have some from a friend.  The NO didn't give us any yet.

You are all as aggressive as me, and I value your collective opinions.  Would you go ahead and give the Temodar on a metronomic dose?  I honestly believe if we don't he will not make it til next week.  If we do, he might still perish but will I be harming him?  Is there any chance it can help him?  I have verapamil, celebrex, disulfiram, copper, everything to make the Temodar more powerful.  I don't want to have regrets about 'not trying' but I also don't want to regret making him sick (if it will) or making his last days horrible.

What would you do...   Dad was on board with absolutely everything early on.  Now he can't communicate so we can't ask him.  Is metronomic Temodar unbearable?  Does anyone have personal experience with it?  Are we too far gone?

Love to all.

Saturday, 16 July 2016

Chance Gilford Obituary

Dear Friends,

Those little columns are so hard to read. Here is the document that became the obituary listed on for publication in the East Bay Times and on-line.

Chance Michael Gilford Obituary

Chance Michael Gilford, 39, promoted to Heaven on 7-7-2016 from his home in Oakland CA, 19 months after being diagnosed with a brain tumor.

Born in San Francisco CA on 4-25-1977 to Rotea James and Judith Ellen Gilford, Chance graduated from Notre Dame Des Victories and Archbishop Riordan High School in San Francisco, and Lewis & Clark College in Portland.

Chance was survived by his Daughter, Mia P. Gilford, and her Mother, Jasmine A. Smith, his Fiancée, a rekindled childhood love, Deanna M. David, his Sister, Judy M. Gilford, his Brother, Steven J. Gilford, all of Oakland, as well as his Mother, Judith E. Gilford of South Dakota, his Brothers Gary L. Stewart of Louisiana and Terry L. Marshall of Vietnam. He was predeceased by his Brother, Michael R. Gilford (1977) and Father, Rotea J. Gilford (1998).

Chance was employed with the Social Security Administration, Robert Half International, and most recently Five9 in software sales.

The family holds love and appreciation for Pastor Daren Barren and the World Conquerors Church congregation, Five9, Dr. Jennie Taylor and her staff at UCSF, Nathalie Babazadeh at Grand Acupuncture, and Stephen Western and the brain tumor community at

In his final months, Chance had one clear message he shared with everyone: Love each other, forgive each other and be happy. He is showing us that love never dies.

Final arrangements are being made through Neptune Society in San Francisco. A celebration of Chance’s life will be held on Tuesday, 7-19-2016, 10AM,  at Sequoyah Country Club, 4550 Heafey Road, Oakland CA 94605. Dress code prohibits jeans or sweats. For further information, please call 520-400-8304.

DC vaccine plus PD-1 antibody in GL261 mouse model

A nod to the anonymous commenter who posted a link to this study in the Dendritic Cell Therapy?thread.  This study is the subject matter for my latest update on Astrocytoma Options.

Late in 2014, the FDA approved two novel drugs for metastatic melanoma. These two drugs, pembrolizumab (Keytruda) and nivolumab (Opdivo) are both antibodies against PD-1, an immune checkpoint found on the surface of immune cells, that leads to anergy (deactivation) or death of immune effector cells when in contact with PD-L1 (ligand for PD-1) expressed on other cells. Though the PD-1/PD-L1 immune checkpoint system evolved as an important means to prevent autoimmunity conditions, the system is clearly co-opted by tumors to escape targeting by host immune cells. As of this writing in July 2016, there are no less than 13 trials currently recruiting glioblastoma patients for therapy involving nivolumab or pembrolizumab, and one trial testing a novel PD-L1 antibody (MEDI4736). The first trial for high grade gliomas to combine a dendritic cell vaccine with a PD-1 antibody is the AVERT trial at Duke University, which opened in early 2016 (NCT02529072). A second trial called CAPTIVE, opened in June 2016, combines the DNX-2401 adenovirus with pembrolizumab (NCT02798406). These two trials are likely the leading edge of the future of immunotherapy: combination of vaccine or oncolytic virotherapy with immune checkpoint blockade.
Preclinical evidence supporting this combination in high grade glioma comes in the form of a study published online in July 2016, by a team of UCLA researchers [1]. In this study, mice were treated with subcutaneous injections of a lysate-pulsed dendritic cell vaccine prepared from murine progenitor bone marrow cells and GL261 mouse glioma cell lysate. Mice were treated with vaccines at either the first day of intracranial GL261 glioma implantation, or at day 3 after tumors were established. Dendritic cell (DC) vaccination significantly increased survival times only in the group receiving early vaccination. In contrast, no prolongation of survival was seen in mice receiving later vaccination, in spite of tumor infiltration by glioma-reactive CD3+ lymphocytes in these mice.
PD-1 was increased on tumor-infiltrating lymphocytes in both untreated and DC vaccinated mice compared to splenic lymphocytes, indicating a localized immunosuppression in the tumor environment. Following DC vaccination, PD-1 was the only marker of immune inhibition increased in the tumor-infiltrating lymphocyte population. All other markers examined, including CTLA-4 (target of the drug ipilimumab) and TGF-beta, were downregulated following vaccination.
These observations led the researchers to treat mice with established gliomas with the combination of DC vaccination plus PD-1 monoclonal antibody (similar in function to the FDA-approved antibodies nivolumab and pembrolizumab). Remarkably, while no survival benefit was observed in mice treated with either vaccine or PD-1 antibody alone, 40% of mice treated with the combination survived at least to day 60 (none of the mice in the other arms survived to day 40).
The survival benefit of the combined therapy was found to be completely dependent on CD8+ cytotoxic T-lymphocytes, as depletion of these cells in the mice wiped out any benefit of treatment. Though mice in both DC vaccine treated, and DC vaccine plus PD-1 antibody treated groups had increased infiltration of CD8+ lymphocytes into their tumors, only combination treated mice had increased proportions of activated CD8+ CD25+ T-cells, showing that PD-1 antibody in addition to DC vaccine was necessary to maintain an activated population of CD8+ T-cells in the tumor environment.
Combination treatment also increased populations of tumor-infiltrating memory T-cells, and when surviving mice from the combination treatment group were re-challenged with a second injection of GL261 glioma cells in the contralateral brain hemisphere at day 60, they again survived significantly longer than untreated controls, though they had no additional treatments beyond the initial treatment at the time of the first tumor cell injections.
GBM samples taken from clinical trial patients before and after treatment with DC vaccines at UCLA showed both abundant expression of PD-L1 (the ligand for PD-1) in the tumor environment, as well as increased PD-1 expression on CD8+ tumor-infiltrating lymphocytes following dendritic cell vaccination. This demonstrates that, as seen in mice, PD-1 expression is a mechanism of immunosuppression following DC vaccination in human patients, a means of tumor resistance to the treatment.
Ex vivo, tumor-infiltrating lymphocytes taken from GBM patients undergoing resection showed greatly increased cytotoxicity against tumor cells when PD-1 antibody was added to the co-culture.
Significance: this study clearly shows that tumor lysate-pulsed dendritic cell vaccination is not sufficient to increase survival in mice with established gliomas, and that additional reversal of local immunosuppression with PD-1 antibody is also required. Human GBM tissue showed the same increase in PD-1 expression following dendritic cell vaccination, as a means of tumor resistance to treatment. Pending demonstration of the safety of combining dendritic cell vaccinations with PD-1 antibodies in current trials for high grade glioma, future vaccine trials should logically include such antibodies (eg. nivolumab or pembrolizumab), especially for patients with significant residual tumor post-resection. This combination treatment is likely necessary to bring the benefits of anti-tumor vaccines to a patient population that otherwise might not significantly benefit – those with significant residual tumor burden.
  1. PD-1 blockade enhances the vaccination-induced immune response in glioma. Antonios et al. 2016.

Friday, 15 July 2016

Tapering and discontinuation of Avastin (bevacizumab)

Impact of tapering and discontinuation of bevacizumab in patients with progressive glioblastoma

"These data indicate that tapering and discontinuation of bevacizumab therapy for other reasons than progression is feasible without an increased risk for tumor rebound or unresponsiveness to reinitiated bevacizumab therapy."

"Stable disease or partial response according to RANO at ≥3 months was achieved in 89 % of patients with reinitiated bevacizumab therapy after discontinuation."

I've uploaded this important study to folder 1 of the Library, Avastin subfolder.

Checkpoint blockade and Cox 2 inhibitors

Since it is becoming increasingly evident that inflammation can be beneficial to enhanced immune response when using checkpoint inhibitors, I am wondering if it might be prudent to discontinue celebrex and possibly even EFA's (fish oil in this case), in an attempt to enhance the immune response.  Any thoughts on this?

Wednesday, 13 July 2016

My daughter was diagnosed with GBM last December. She has finished radiation in April and is continuing the oral chemotherapy. She has done quite well physically but her last MRI was showing some 'enhancement' causing some concern. Yesterday she had a Pulmonary Embolism, so she is in the hospital being monitored and given blood thinners. There is a concern since her platelets are already borderline low. I read last night online that blood clots is 7 times more likely in cancer patients and that Pancreatic and Brain cancer patients seem to have an even greater occurrence of PE. I was surprised that her doctors had not warned her of this possibility and the symptoms to watch for. We are just lucky she decided early in the morning that something wasn't right and immediately went to the hospital. I hate to think about what could have happened if she had waited longer.
Also, she is taking a typical drug cocktail. I am wondering if there are anyone out there following this blog who have had a similar experience and if there are certain supplements that should be avoided now that she has had this clot.
Also, her records have been reviewed by UCSF for a possible clinical trial. She doesn't  qualify at this time. I am wondering if have a Pulmonary Embolism would disqualify her for clinical trials. Any advice, answers??

Linda W.

2nd generation Novocure device (Optune) approved by FDA

Novocure Receives FDA Approval for Second Generation Optune System

Released : 07/13/2016

Second generation Optune system is less than half the weight and size of first generation Optune system

New system aims to make Optune therapy even easier for glioblastoma (GBM) patients

ST. HELIER, Jersey--(BUSINESS WIRE)-- Novocure (NASDAQ: NVCR) announced today that the U.S. Food and Drug Administration (FDA) approved its premarket approval (PMA) supplement application for Novocure’s second generation Optune system. The new smaller, lighter Tumor Treating Fields (TTFields) delivery system is now available to glioblastoma (GBM) patients in the United States.

Monday, 11 July 2016

ABT888 aka Veliparib with TMZ trial

Has anyone been involved or know anything about this trial Methylation is required but unfortunately it's includes a randomized 50% placebo factor -- I am not a fan of rolling those dice. 

Dendritic Cell Therapy?

Has anyone has success with DC therapy here in the states?

We are looking at Dr. Chang's offering here:

And the Issel's center here:

For Dr. Chang's offering, does one need to travel to Germany initially or can it all be done here? I know that his NCV offering requires travel to Germany, initially.

Anyone have any experience with either Chang or Issel for GBM?

Sunday, 10 July 2016

Tumor Genetic Test

We did tumor genetic test at UCSF. Here's the mutations they found...

Please let me know your insights and suggestions for what medicines or therapies are more vs. less effective given these genetic mutations. Mom's radiation is over now and we are planning the next steps. What FDA-approved as well as experimental drug should I push for? thx

Saturday, 9 July 2016

Opinions of GcMAF?

What are your opinions on GcMAF?

Anybody knows about onk201 tablets?

Oncologist recommended to me onk201 tablets. Anybody know what is it?

Friday, 8 July 2016

Chance Gilford, Age 39, Promoted to Heaven

Dear Friends,

It seems impossible that up until a week ago, Chance was creating YouTube videos about healing and "going around the world" to help others:

His left temporal brain tumor was causing deficits on his right side. He lost his right peripheral vision, numbness was growing from his right foot up, from his right hand up. He went to church on Sunday, struggling to walk, with his beautiful fiancee and future mother-in-law. He was always happy to be in his church community.

On Monday, he had a terrific headache. Then Tuesday about 1PM he collapsed when his fiancee and I were helping him into bed. He never awoke or spoke again. We do not believe he had any pain after the headache on Monday. Yesterday about 1PM he breathed his last breath.

Through the process, Chance found great healing in many, many ways. Even when he was making his transition, he was talking to his daughter (who happens to be in Paris) in her dreams, and four other people have told me he visited them.

Thank you to this community, and Stephen especially, for the loving support in helping each other through what I've decided is the worst possible diagnosis. When I contacted Stephen early on seeking his help, I told him I was going to kiss every frog, talk to everyone who would talk to me, so that if I had to face this resolution, I would have no regrets.

I have no regrets. I have great peace that my son has just begun the healing work he came to do. For the first time in 20 months, last night I put my head on my pillow with no concern whatsoever for my son. The great struggle has ended. The great collaboration has just begun.

Thursday, 7 July 2016

Temozolomide (Temodal) dose

Hi, everybody!
may i ask about first cycle of temodal after radiation? ( firstly diagnosted).
One NO said to start on 26 day after finish radiotherapy with 480 mg per day ( 190 cm, 110 kg), another NO said to start temodal on 30-35 day after radiation with daily dose 360 mg. Can someone share your thoughts on this?

My wishes of health!

Join Me in Nominating Stephen or Any1 Else: Nominate Your GBM Hero Today @ Cure

Good Morning Everyone,
I just got an email from Cure about nominating your GBM hero. I, like all of u, I am sure, know that all our loved ones dealing w/ this (now or in the past) ferocious cancer are all the heroes. And all of you who help support, navigate, make treatment decisions, deal w/ the physical and emotional toll GBM brings with it every minute of the day/night, all while continuing to care for yourselves, others and while dealing w the daily grind of life, are also the heroes. However, the more I thought about it and read what they r looking for, one person came to mind; Stephen. He has gone above and beyond with his help and I will never be able to repay him (no $ amount would b able to express my sincere gratitude, although $ is nice if I had it!!). He takes his own time to respond to each of us, looks at each of our individual situation and will send us studies, trials, his opinion of what to do, shares what he learns and not only does he put it all in a website but he even made and organizes this blog which we know is a lot of work. I fig this is one small way we can show him our appreciation and say Thank You. So, I hope u all will join me and take a few min to nominate Stephen or someone else, if u prefer. Stephen, and every single one of u have helped me in ways u will never know. So, I thank u all and u r all my heroes. I hope u don't mind this Stephen and leave it up!! I did not get a chance in my mad rush this morn to read every sentence  of it. If I missed anything, let me know.

Hi Everyone,

Thank you to Stephen for adding me to the forum. We very much appreciate a place where we can discuss things with likeminded people. My father (Adrian; 58, UK) was diagnosed with GBM at the beginning of May this year. He had total resection and has had no detrimental effects so far from either the GBM or the surgery. He is currently in week 4 of chemoradiation and we have started him on a cocktail of drugs after reading through information on this page, Stephen's page, and reviewing the literature (we have a science but not a medical background). We wanted to post our list in part to introduce ourselves and also to get any advice you guys may have. Dad's tumour is IDH1 negative. I post below what Dad is taking and post a couple of questions below. His GP is open to prescribing drugs if we provide him with some evidence of effectiveness. Thanks for taking a look.

Adrian’s Daily Cocktail (updated 20/07/2016, last few days of chemoradiotherapy)

Prescription while on Radio and Chemo therapy for 30 days:

Hydrochloride Dihydrate - Anti-Sick (Ondansetron 8mg tablet) started 1x morning, reduced to 1/2x morning
                        - 20/07/0216 stopped after 25 days caused constipation and minimal sickness feelings
Temozolomide (Temodal - Merck Sharp & Dohme 140mg capsule, BMI based dosage) 1x morning
Co-Trimoxazole (Anti-Biotic 480mg tablet) 1x morning every other day
Levetiracetam (Keppra 500mg tablet) was 1x morning and 1x evening, reduced mid term to 1x morning, and a week later reduced to 1/2x morning, recommended to stop(?)
                        - 20/07/2016 stopped after 20 days (as no fitting experienced)

Prescription Chemo therapy after Radiotherapy (expected):

Temozolomide (Temodal - Merck Sharp & Dohme 140mg capsule, BMI based dosage) 2x morning for 5 consecutive days every month following Radiotherapy

Ongoing Prescription by special request:

Celebrex (Pfizer 100mg capsule)    1x evening
Chloroquine (Avloclor - Alliance Pharma 250mg tablet) 1/2 tablet twice a week in morning (available off prescription)
Cholecalciferol 800IU (Fultium D3 - MA Hodder Internis, equiv. to 20 micrograms Vitamin D),   1x capsule in morning (available off prescription under other brands)

Ongoing Supplements:

Cannabinoids (CBD Brothers CBD Oil Blue Edition)    2x drop morning, noon and evening
Turkey Tail (Immune Support 500mg capsule)     3x morning and 3x evening
Melotonin (Eurovital 10mg tablet)     1x evening
Fish Oil (Omega 3 - Solgar 950mg capsule)     1x morning and 1x evening
Boswellia (Solgar capsule)     1x morning and 1x evening
Curcumin (Super Bio-Curcumin - LifeExtension 400mg capsule)    1x morning
Optimized Resveratrol (LifeExtension 250mg capsule)    1x morning
Berberine (Swanson 400mg capsule)     1x morning and 1x evening
Milk Thistle Fruits (Silamarie - Bio-Health 450mg capsule)   1x morning and 1x evening
Ashwagandha (Solgar 400mg capsule)   1x morning and 1x evening
Senna (Senokot - Reckitt Benckiser, 154mg tablet),    1-2 as required, evening, to offset Anti-Sick tablet constipation.

1) Is there anything else we should be taking at the moment or anything we have currently that we should be taking at higher dose or specific times of the day? He is having radiation late afternoon, Monday-Friday. Not being a medical expert I am wondering if we are covering enough bases or doubling up unnecessarily? Would be great to get a basic understanding of the processes so can get a better feel of the literature.

2) Should we stop taking levetiracetam completely at the moment as oncologist recommends?  I read one paper Kil et al 2011, that this drug may be helpful in sensitising the cancer cells during chemoradiation. I see also that is useful as a sensitiser when he will be on the high dose chemotherapy.

Thank you

Sam & Adrian

Tuesday, 5 July 2016

Temozolomide+Radiation+Avastin in Newly Diagnosed?

My dad was diagnosed with stage four GBM in early June. His MGMT is methylated. Due to the size, etc. of the tumor, his NOs recommend adding Avastin to his standard care of temozolomide and radiation. The more I read the more confused I get about whether this is a good idea. Any thoughts? We are also working on adding Optune to his treatment regiment.

Also, has anyone had experience with the Stanley Brothers' CBD products?


Sunday, 3 July 2016

Choice of german clinic.

Hello everybody!
Can I ask for help in choosing a German clinic for immunotherapy?

At the moment, we only have histology and immunohistochemistry, the location of tumor left temple - that's all we know so far.

this is a very cellular glial neoplasm consisting of pleomorphic, atypical gemistocytic astrocytes which diffusely infiltrate the cerebral cortex and subcortical white matter, forming secondary structures of Scherer. Mitotic figures, including atypical forms, are readily recognized, as well as prevascular lymphocytic infiltrates and foci of microvascular proliferation. In addition, there are large areas of confluent necrosis with early organisation and some trombotic blood vessels.2.Immunohistochemistry:ki-67 ( sp6)- positive tumor expression to 15 %Bcl-2a Ab-1 (Clone 100/D5)- tumor expression weakly positive,p53 ( clone Sp5) positive expression to 5 %/And another part of brain (left temple)/ki-67- positive expression to 5 %CD 45/T200/LCA Ab-2 ( clone PD7/26/16 +2B11)- positive expression in abscess,GFAP glial fibrillary Acidic Protein Ab-6(GFAP) positive expression.
Conclusion :Pleomorfhic glioblastoma ( ki-67- to 15 %) with a plot of abscecc.

Now we have a proposition to send blocks to clinic Hallwang to make tests ( Next generation Sequencing 3+tumor surface makers and amplification analysis 9500 euro, and Screening for tumor Associated Antigens TAA 3800 euro) to start producing of vaccines.
( From mail from clinic: It is known, that tumors show the accumulation of several genetic modifications, thus providing cancer cells with the selective growth advantage to initiate expansion. Now, sophisticated high-throughput technologies enable the identification of  these mutated genes in cancers, leading to potent targeted immunotherapy - by so called tumor-associated–antigen-multiplex-THX-Vaccination-Strategy. Particularly THX-Vaccination-Strategies against the tumor antigens or mutated antigens have shown amazing results, showing a stronger anti-tumor immune response than several dendritic cell vaccinations. In comparison to the often used single-THX-Vaccination-Strategy - "one THX against one tumor antigen" - that is limited by the so called MHC-class-match and by the fact that one THX might not be efficient to induce an immune response or can be bypassed quickly, we have established a Multiplex-THX-Vaccination-Strategy that includes all therapeutic relevant immunogenic THX’s against one tumor antigen - "Multiplex Immunogenic THX’s (50-200 THX’s) against one tumor antigen. Furthermore, we are using the Multiplex THX’s in combination with the most upfront immuno-adjuvants. Our adjuvants have been optimized in order to improve efficacy and stability of the Multiplex THX Vaccine formulations and to reduce side effects.

Besides this test we would strongly suggest one of the most upfront analytic approaches by next generation sequencing (NGS). We entered the third generation of NGS, namely NGSIII that offers the analysis of all therapeutic relevant cancer driving mutations, thus offering the chance for a targeted genetic therapy and an efficient immunotherapy.)

Another one proposal is from Dr. H. Bojar.
Vaccine design

1.       Transcriptome analysis (activity of all 20 000 human genes) including selected immunohistochemical analyses: 1 500 €
2.       Exome analysis tumor DNA versus blood DNA (mutation analysis of all 20 000 protein-coding genes):                   6 500 €
3.       HLA class I & II haplotype determination:                                                                                                                              1 000 €

Vaccine production

1.       Synthesis of 10 mutated neoantigen peptides                                                                                                             approx.. 5 000 €
2.       Production of the vaccine cocktails incl. quality control (sterility etc.)                                                                    approx.. 2 500 €

Also we are still waiting for information from another clinics from Stephen list of german clinics.
can I ask to help me understand? the price of the study of the tumor is very different if a higher price is justified? I apologize in advance for the stupid question, certainly I ask about elementary things.

 Thank you in advance!

Saturday, 2 July 2016

Cocktail Medication Times.

I am finding it tricky to decide the best times to give my 18yr old daughter her Cocktail medications and wonder if anyone could advise?
 The NO has stopped her TMZ saying he thinks she has her first recurrence within the 6 months of  TMZ after radiotherapy. It's in a different area to original tumour and NO thinks it extends to Brain Stem so we are waiting the date of a Perfusion Sequencing MRI Scan. Her GBM is Methylated. original Biopsy said ATRX lost, focal positivity for GFAP. EMA is negative as well as IDH1. Proliferation labelled Ki67 reached 40% focally. I've been told recurrence Biopsy if done would probably have different results.
I am keen therefore to get the maximum benefit from the medications she is on, which are:-
Celebrex 100mg x 2  x twice daily
Itraconazole 100mg x 1 x once a day
Keppra 750mg morning 1000mg evening
Metformin 500mg x 1 x twice daily
Omeprazole 20mg x1 x twice daily
Rantidine 150mg x1 x once a day
Dexamethasone 6mg x twice daily
Melatonin 10mg x 2 bedtime
Docusate 100mg if required for constipation.
Cyclizine 50mg x 1 up to 3 times daily if required for nausea.
PSK 16 1070mg x 3 once daily
Pure Fish Oil 1100mg x 2 once daily
Vitamin D3 x 2 1000unit tabs once daily.
Yesterday she also started Doxycycline 100mg x 1 once a day.
I read that Dexamethasone reduces the effectiveness of Itraconazole and some medications like
Doxycycline need to be taken two hours apart from indigestion remedies.
Any help as to how to optimize the use of these medications, and /or any recommended treatment advice would be greatly appreciated.
I'm aware that she needs to be on more Cocktail medications but these are proving difficult to get at the moment. Not sure if there any that would be of particular benefit to get right now?We are awaiting delivery of Boswellia and are hoping to get a prescription for Low Dose Naltrexone.

Friday, 1 July 2016

DCA schedule in C6 rat glioma model

Interesting Ukrainian study showing schedule-dependent effects of DCA.  Daily DCA treatment for 6 days starting at day 2 decreased average life span by 15%, daily treatment for 6 days starting at day 7 had no effect on survival.  Longer treatment (13 days) starting at day 2 increased average life span by 25% or more.  The DCA treatment was more effective under hypoxic conditions.

Full study available for download here.