Micronutrient mix ?

Here are 2 studies on micronutrient mixtures and glioma.

http://www.spandidos-publications.com/10.3892/ijo.2014.2465

Inhibition of Glioma Cell Line A-172 MMP Activity and Cell Invasion In Vitro by a Nutrient Mixture

M.W. Roomi, V. Ivanov, T. Kalinovsky, A. Niedzwiecki, M. Rath
Medical Oncology 2007, 24(2): 231-238

Standard multimodality therapy of gliomas is associated with poor patient survival and significant toxicity. Abnormal expression of matrix metalloproteinases (MMPS) is associated with tumor growth and invasion. We investigated the effect of a combination of natural compounds (NM), primarily composed of lysine, proline, ascorbic acid and green tea extract in vitro on glioma cell line A-172, by measuring MMP secretion, invasion through Matrigel, and cell proliferation. Glioma cells A-172 (ATCC) were grown in modified Dulbecco�s Eagle medium with10% fetal bovine serum and antibiotics and treated with NM at 0, 10, 50, 100, 500 and 1000 �g/ml concentration in triplicate at each dose. Cell proliferation was assayed by MTT, MMP secretion by zymography, invasion through Matrigel, and morphology by H&E staining. Zymography showed one band corresponding to MMP-2, which was inhibited by NM in a dose dependent fashion, with virtual total inhibition at 500-�g/ml concentration. Invasion through Matrigel was completely inhibited at 1000 �g/ml NM. NM was not toxic to glioma cell line A-172 at lower concentrations and exhibited toxicity of 50 % over the control at 1000 �g/ml. These results are significant as the nutrient mixture significantly inhibited MMP secretion and invasion-important parameters for cancer prevention without toxic effects, suggesting NM as a potential therapeutic agent for treatment of glioma.

perillyl alcohol

does anyone know Where can I get this in Europe or a international website?

Palliative radiation treatment questions and our story

Everything started Aug 20, 2014.  My son has had 3 stable MRIs after two recurrences, two craniotomies, one gamma knife surgery, started using Optune in April 2015 (not as faithfully later on because of quite bad lesions and burns), irinotecan chemo, and avastin every two weeks infusion since March until about Sept 4 when he had to stop chemo because he was going to have to have the Oomaya Shunt surgery -- so he was off chemo a total of about 7+ weeks and then had a new MRI before starting chemo again.  He also had to be out of PT/OT to rest up after the shunt surgery so he became weaker (he is paralyzed on left side of body since his 2nd craniotomy).  So the new MRI showed extreme progression -- new tumor in the other hemisphere - too large for gamma Knife -- also disease attached to the ventricles.  Now it is a matter of time until the inevitable the NO says when asked. He said he is sorry that he had to be off chemo for the shunt -- this is exactly why I initially said no to the shunt process.  I think the NO wasn't quite fully up front with us about this.  He wanted to aspirate spinal fluid through this method rather than spinal taps because spinal taps can lead to infection -- well here we are with full blown new tumor!  I can't say I am happy with our NO right now and have always been in the past.  If feels like he was experimenting with Michael because Michael was/is his worse case of GBM.  Experimenting without stating the facts to us.  I previously told him I knew the GBM would grow even doubling in size every two weeks with no chemo.  I told him also that I had read that Avastin when stopped can cause terrible migration of new tumor and was told not so.

The tumor board recommends 10 doses of radiation at a higher dose than when doing the standard 30 which he had a year ago.

He is unmethylated, has the Tp53 mutation, has the TERT mutation,  and some other mutation (not very good prognosis from the start.  They did not do genetic testing at all until just about the time progression appeared on the first MRI after radiation and temador were completed.  I had to stomp my feet and scream (not literally) to get the testing done.  I had to argue with the NO that temador doesn't work well for unmethylated.  Of course the Gold Standard had to fail before non traditional agents could be tried.

So now we are down to starting radiation again that can certainly do more harm than good but also that could also do more good than harm I'm told.  This is to prolong the inevitable the NO said.  I would just like to know what I should absolutely be sure Michael is taking to help the radiation to do the most good.

Michael is experiencing significant mental confusion, disorientation to time and space, short term memory just not working -- all of this got really bad since last Tuesday when he had the topotecan for the first time through the Oomaya shunt.  But he had been experiencing forgetfulness.   For example: not remembering what city the NO is in and his own street address and such.  But now it's really extreme.  I had tried giving him DCA before the bad memory problems for only a total of about 8 days and because of confusion I felt I could not risk giving it to him.  Though at this time I'd really like to give him the highest safe dose but am afraid to.  I did not give DCA 8 days consecutively but rather 3 days and stopped and then 2 days and 2 days and finally decided it was too risky.

The last craniotomy that caused severe left side paralysis also caused blindness in the left visual fields of both eyes.  But now his vision is getting blurry and he has been on chloroquine and accutane so am stopping those now just in case they are contributing to the blurry vision.  He has a neuro oncologist who says his eyes are not affected by the chloroquine etc.  But he doesn't seem really knowledgeable about these drugs. Since starting this post I received a note from Rich stating Chloroquine and Valproic acid should be used during radiation.

So bottom line is tell me what is important to make the radiation as effective as possible.

Thank you all.

Joan

CARIS report

Hi,

This is part of the CARIS report of my brothers tumour. We are looking into further drugs for him to take. Can anyone offer any advice from this information? I have 12 pages of results but unfortunately the Dr hasn't offered any advice!Thanks, Lisa



PAGE 2 of 12

Biomarker	Method	Result
EGFR	IHC	Positive
MGMT	Pyro SEQ	Methylated
PD-1 IHC	IHC	Positive
RRM1	IHC	Negative

Biomarker	Method	Result
TLE3	IHC	Positive
TOPO1	IHC	Positive
TS	IHC	Negative

Are essential oils a quack?

So  I watched one episode of "thetruthaboutcancer" and the lady there says that she cured her astrocytoma with boswelia essential oil taking drop of it every 2 hours. Is this a quack? It says on wikipedia that those oils can be toxic.

Why doctors don't offer lomustin?

Everybody is taking temozolomide and after that avastin. When I spoke to few doctors none of them offered lomustin. Is there a reason why doctors don't offer it? Is it because of side effects? We know that it worked very well for Benn in combination with verapamil.

Looking for advice to get cocktail started for my mom with recurrent GBM

Hi everyone. First off thank you all for your thoughts, information and advice. You guys keep hope alive. I'm here to try and figure out what else we (my sister, brother and I) could be doing for my mom.

I'm hesitant to make this post because I do not know the make up of my moms tumor(s) however, I do know that we need to do more for her now, before it's too late. I can try to get the pathology report from UCLA and post more on that when I do. I couldn't tell you what methylated or IDH-mutated mean but I do know my moms situation seems to be getting worse.

Without a pathology report I will try to give a brief backstory so you get a picture of what's going on here. I hope this is the right place for this and I will try to keep it as brief as possible. 

Jan 2008: Ended up scraping off side mirror on the car and realized peripheral vision was gone. Eyes checked, no problem. MRI showed brain tumor. Surgery Jan 11, 2008 at UCLA with Dr. Daniel Kelly (Now at St. Johns Santa Monica) with complete (or as close to complete) resection as possible. Diagnosed at age 51 with Stage 4 GBM and received all the scary statistics about her being lucky to make it a year. She bounced right back from the surgery as if nothing every happened. Up and about within a day or so back to her normal routine. 2 years of Temedor 5 days out of the month and around 60 rounds of radiation later, life was good and stable MRI's became the norm although every MRI was never any less scary awaiting results. We thought perhaps she was in the clear. Her vision also came back :)

My dad, her caretaker passed away unexpectedly in June 2012. I only bring this up because I believe stress may have played a big factor in the next update.

Jan 2013 MRI was clear. In fact, we celebrated 5 years remission. She then missed a scan in Feb '13 due to an insurance mix up, and finally had a scan in March '13 which showed a pea sized recurrence in the original tumor location. Prior to this she was doing so well that the doctor was going to allow her to get MRI scans less often. She was off Temodar for 3 years before this recurrence. So she went right back to several more radiation treatments and another year of Temodar (one week each month) and MRI scans monthly. Her scans showed the tumor to be shrunken and the site to be stable with no new growth.  

March 2015 MRI showed new but small growth in a new location close to the original tumor site but a bit deeper in. Oncologist tried new chemo, CCNU and were to follow up in one month. We were told she has had her lifetime max of radiation so that was out. Next scan showed the Tumor almost tripled in size. Options were try another chemo, surgery if the Tumor Board deemed it appropriate and a clinical trial going on at UCLA, Toca 511 where they inject a virus into the tumor cavity directly after resection. The remaining virus was to infuse itself in remaining cancer cells later to be killed by pills she took. We got word that surgery was an option and were able to enroll in the clinical trial. Surgery was performed at UCLA on May 14th, 2015 with Dr. Linda Liau. MRI before surgery showed more growth. Surgery was as successful as possible and Dr. Liau was somewhat surprised as she said so much of the tumor she pulled out was "dead." My mom had more trouble recovering from this operation. Memory loss for a few days, permanent vision loss and basically a big blow to her spirits because she didn't bounce back. She was still very much interested in recovery and getting stronger. As part of the study every 6 weeks she got an MRI and she took pills that were I guess anti-fungal in nature however, they were to head to the implanted virus, that had infused itself in remaining tumor cells and form a chemotherapy to destroy left over cancer cells. My mom began recovering, walking more normal and getting back to normal life minus navigating differently due to a permanent visual field cut from surgery. 

Things were looking great until October 8th 2015 when a scan showed some "changes." We were told it was nothing to be concerned of yet and that they weren't sure what was going on actually. Not the most comforting news. We were to follow up in a month or sooner if things got worse. My mom began to walk more poorly (always veering to the left) and crashing into walls, her memory became worse, most scary she just started acting odd like throwing away her fork and knife and looking for things around the house that were in completely different areas like the telephone for instance. She is aware that she is getting worse and is depressed and spends most of her awake hours crying. (We saw my grandma die from a metastatic brain tumor from lung cancer and it was not pretty) We tried to get my mom in for a scan, this time they wanted to do a DOPA-PET scan, which we were told might be the future of monitoring brain tumors. Insurance went back and forth for around 2 weeks on approving and denying and then approving only to have UCLA "run out of the DOPA injection dye."

This brings us to now. Nov 3, 2015 new scan shows growth and not just one area. The larger area is the one that appears to be messing up her walking. Our oncologist stated there looked to be a lot of inflammation around the area along with necrosis. He states that surgery on that area is probably not an option and may do more damage than good. We will seek a second opinion of course.

Nov 3, 2015 she had an Avastin infusion and was put back on Temodar 5x per mo. The Toca 511 trial has been put on hold. Her spirits are destroyed.

Throughout the course of this she has taken many supplements (mostly the first few years) Lots of different mushroom powders and something called Ave, some type of wheat germ for boosting her immune system. March of this year she started the CBD/THC Cannabis oil off and on. She can't stand feeling "high."

As of now she's taking:
Temodar 
Avastin 
Keppra 750mg 2x daily 
AHCC mushroom supplements. 

She was taking Wellbutrin but I'm not sure how consistent she is. 

It's probably too early to tell if the new drugs have done anything however, prior to them we were seeing a steady decline. Since getting them a few days ago she at least doesn't appear to be any worse symptom wise. 

We were told if she responds to treatment, great. If not she could be gone in a few months. I'm hoping this could at least buy us some time to get her back on the right track. 

So, what would you guys recommend we add in immediately along with her Avastin and Temodar? 

I'm sorry this is long and thank you. If someone would like to email or talk on the phone I'm sure that could be arranged. 

Reduced angiogenesis in IDH-mutant grade 2/3 gliomas

I posted a summary of a new study on this topic at Astrocytoma Options.

A Closer Look at IDH Mutations

About halfway down the page.

The supplementary material for this study also shows that COX-2 and NF-kB is also downregulated in IDH-mutant lower grade gliomas versus IDH non-mutant lower grade gliomas.

Viagra / Sildenafil Coupon (might just be US)

Hi -

Dr's office gave me a discount card today for up to $150 off Viagra.  Looks like you can use it up to 3 times.  Here's a link to the card I have:  https://www.viagra.com/savings-offer

Also they mentioned that the generic will be available soon.  I can't tell online when.

Thanks.
Annie

How about graviola.

How about graviola or pawpaw. Graviola woks invitro and causes Parkinsons so it means it gets to the brain.

Brain tumor cell networks in astrocytoma and GBM

There is a new high impact study published online in Nature yesterday.

Brain tumour cells interconnect to a functional and resistant network.

"Thus we anticipate that pharmacological targeting of TM [tumor microtube] formation and function will open new therapeutical avenues for treatment-resistant brain tumours."

I'll likely have more to say about this later, just wanted to give a "heads up".

Where to get some germs?

http://www.bbc.com/future/story/20150306-the-mystery-of-vanishing-cancer

33 years old, recurrent high grade oligoastrocytoma - cocktail and story

I'm reposting Daninha21's recent comment here, as it deserves its own thread.

This is what it says on the pathology report: Mixed Anaplastic oligoastrocytoma (grade 3-this was 4 years ago) if it were not for the prominent oligodendrogial component it would be diagnosed as glioblastoma (again, that was 4 years ago). Now Dana Farber looked at the sample and pathology report and said it was a grade 4 all along (very confusing!) this happened when we were thinking about clinical trials. Methylation score is 7.0. FISH analysis showed loss of 19q but NOT 1p (so more astrocytoma behavior) IDH status Im not sure, going by the what the doctor wrote on a piece of paper this is my interpretation -> decrease mutation (IDH 1/2)

It was all very confusing to us but Dana Farber after reading and seeing the pathology report decided to cancel surgery for a second biopsy as they consider his tumor a grade 4 glioma. We decided to try TMZ again and I'm trying to learn about the cocktail approach but I'm not sure we are doing it right because of all the different components of this tumor. I'm not sure what to go by but his tumor reoccurrence is really big and it went from left frontal lobe to right frontal lobe. This is what he takes:

Vit D 5000 u once daily
Genistein 125mg every other day
Milk Thistle 250mg twice daily
Fish oil 5000mg divided in 2 doses daily
Lycopene 20mg daily
Green tea Extract 850mg twice daily
Resveratrol 250mg twice daily (will be switching to a 500mg cap once daily)
CoQ10 200mg twice daily
Garlic 600mg daily
Boswellia 400 mg twice daily
Curcumin 400mg twice daily
Quercetin 200 mg twice daily
Bromelain 200mg twice daily (to help absorb curcumin)
Anti Fatigue complex daily (w/ vit D, Mag, Selenium, ALC, ALA)
Multivitamin daily
Coriolus versicolor 1800mg nightly
Melatonin 20mg nightly

TMZ 460mg 5 days on/ 23 days off
Keppra 500mg twice daily
Metformin ER 1000mg daily
Omeprazole 20 mg daily (40mg twice daily 3 days before TMZ until 2 days after)
Simvastatin 20mg daily (not sure about this one)
Celebrex 200mg daily (just stopped since there was a drop on WBC from 4.9 to 3.6) might add again, not sure.

Is there anything you recommend? His oncologist was opposed to anything even the supplements, so now we have a different doctor that is working with us behind the scenes but we both dont know enough and are trying to learn as we go which sometimes it makes her uncomfortable with certain meds

Valcyte

Lisa wrote:

Also, what do you think of Valcyte? My brother has been taking it for nearly 12 mths. Nothing came up when I searched on this forum.

This is worth starting a new thread about, since we haven't discussed in on the blog yet.  

Clinical studies on this drug for glioblastoma have generated a great deal of controversy.  For a primer on this controversy see the Valcyte section on the Repurposed Drugs page at Astrocytoma Options.

The original, small, prospective, "hypothesis generating"  clinical trial showed no improvement in overall survival or progression-free survival for patients randomized to receive Valcyte.  The study's primary endpoint was tumor volume at 3 and 6 months post-surgery, so patients in the placebo arm were allowed to cross over to Valcyte after six months, which could have masked any overall survival benefit of Valcyte compared to placebo, but there was also no improvement of PFS.

Then a retrospective study, including patients in this trial plus another group treated with Valcyte on compassionate use, was published in the New England Journal of Medicine, and this is when the real controversy began.  This study is affected by a form of bias called "immortal time bias", which commentators were quick to point out.  Still, other commentators such as Charles Cobbs claims there was an unexpected number of longer-term survivors.

Multiple preclinical studies have demonstrated a role of CMV in glioblastoma progession, providing at least a rationale for the use of Valcyte.   I simply don't know what to think about Valcyte.  It's remarkable how a prospective study could show no improvement in median PFS, while further retrospective study could claim large benefits.  That said, I fully understand why patients would want to try this drug, on the chance that it could truly be helpful.

Storing DCA

Mike,
Have you seen any reports on how best to store DCA, if storing for a year or more?  Do you know if it's okay to freeze?

Does anybody have access to this article?

http://www.researchgate.net/publication/280388338_Temozolomide_competes_for_P-glycoprotein_and_contribute_to_chemoresistance_in_glioblastoma_cells

Bernie's MRI Shows a New Spot

Hey all,

Bernie is almost exactly a year out from the original diagnosis and surgery for GBM 4, and her most recent MRI is now showing a small area of enhancement in the white matter just beside her original tumor bed.  When compared to the MRI done 4 months ago, there was a very very light, very small spot in that same location, and over the 4 months, it has grown into the spot she has now.  I would estimate that it is probably 3-4 mm in diameter.

Our NO has said that there is a good chance that this is radiation necrosis, as it's within the original field and because it is not well delineated/circumscribed like typical GBM occurrences.  Either way, we now have another MRI in 5 weeks instead of 8 so that we can keep a close eye on it.

I would say the silver lining is that this spot is in a pretty favorable location, as it's closer to the surface of the brain.  Still an unwanted development.  I'm not terribly familiar with necrosis, so I will keep you all posted as to how this all unfolds.

Best wishes,

Kendall

Verapmil has anti viral activity against CMV and other viruses

 Even though I don't know the dosage and it was cultured in human embryo skin muscle cell it is still exciting...... I know of 2 people who have used verapamil daily (for a year) as part of their cocktail and are still doing great. Rich is one of them.
Using Verapamil alone resulted in a 10-fold inhibition and papaverine resulted in 18-fold inhibition of CMV but combined the inhibition was 112-fold inhibition....

Seth starting swallowing Verapamil and Papaverine.

Ok I'm done. The link is below

Abstract

The disclosure demonstrates the inhibition of replication of human cytomegalovirus (HCMV) in cultured human embryo skin muscle cells by two separate subclasses of direct-acting smooth muscle relaxing agents alone or in combination with each other. These two subclasses are characterized mechanistically as calcium influx blockers (or calcium channel blockers) and cyclic nucleotide modulators. More specifically, the class of calcium influx blockers is exemplified by the drugs verapamil (and methoxyverapamil), nifedipine (the prototype drug of 1,4 dihydropyridines), and diltiazem. The class of cyclic nucleotide modulators is exemplified by the drugs isobutylmethylxanthine, papaverine (and its synthetic analog dioxyline), forskolin, and sodium nitroprusside. In addition, the present disclosure demonstrates that agents from one class, e.g., a calcium influx blocker, act synergistically when used in combination with agents from the other class, e.g., cyclic nucleotide modulators. The calcium influx blockers are shown to act synergistically when used in combination with alpha interferon. In further embodiments, papaverine family member agents are shown to exert antiviral activity synergistically with antiviral nucleoside analogs.

http://www.google.com/patents/WO1987007508A1?cl=en

Last day of chemo... pills to stop?

I can hardly believe it, but today is Dad's last day of chemo (!)  Re-reading my notes, I believe we can now stop some of the medications until we start up our 'maintenance' round of chemo in about a month.  Here is my initial list - highlighting pills I believe we should now stop.  Would love feedback.  Stop cold turkey?  Taper?  Am I stopping something I should keep in the interim between chemo rounds?  I don't want to overlook something critical.  I intend to re-introduce Depakote and Verapamil a week before we begin chemo again.

Drug	Dosage	Qty	When
Pterostilbene	100mg	2 tabs	7:30 AM
Keppra	500mg	1 tab	7:30 AM
Dexamethasone	4mg	2 tabs	7:30 AM
Metformin	500mg	1 tab	7:30 AM
Selenium	200mcg	1 tab	7:30 AM
Verapamil	180mg	1 tab	7:30 AM
Depakote	500mg	1 tab	7:30 AM
Green Tea Extract	500mg	3 tabs	7:30 AM
Ranitidine	150mg	1 tab	7:30 AM
Reishi	500mg	6 tabs	7:30 AM
Quercetin	500mg	3 tabs	7:30 AM
Reservatrol	125mg	1 tab	7:30 AM
Omeprazole	20mg	1 tab	7:30 AM
Disulfiram	250mg	1 tab	NOON
Copper	2mg	3 tabs	NOON
Coriolus Versicolor (PSK)	600mg	2 tabs	NOON
Tumeric (NRF2)	600mg	2 tabs	NOON
Curcumin	750mg	1 tab	NOON
Celebrex	200mg	1 tab	NOON
Chloroquinine (Plaquenil)	200mg	1 tab	NOON
Pterostilbene	100mg	2 tabs	NOON
Pterostilbene	50mg	1 tab	NOON
Multi Vitamin		1 tab	NOON
Sulfamethoxazole		1 tab	M/W/F   NOON
Vitamin D3	5000 IU	1 tab	NOON
Green Tea Extract	500mg	3 tabs	NOON
Lycopene	10mg	1 tab	NOON
Maitake	1000mg	2 tabs	5:00 PM
Reishi	500mg	4 tabs	5:00 PM
Green Tea Extract	500mg	2 tabs	5:00 PM
Coriolus Versicolor (PSK)	600mg	3 tabs	5:00 PM
Keppra	500mg	1 tab	5:00 PM
Dexamethasone	4mg	2 tabs	5:00 PM
Depakote	500mg	1 tab	5:00 PM
Metformin	500mg	1 tab	5:00 PM
Ranitidine	150mg	1 tab	5:00 PM
Fluoxetine	20mg	1 tab	5:00 PM
Stool Softener	100mg	1 tab	5:00 PM
Melatonin	10mg	2 tabs	7:00 PM
Zofran	8mg	1 tab	7:00 PM
Viagra		.25 tab	7:30 PM
Temodar	140mg	1 tab	8:00 PM
Temodar	20mg	1 tab	8:00 PM

Thanks.

Annie

TMZ synergy with oncolytic virus.

Synergy of tmz with oncolytic virus? Will it aply to newcastle virus?
http://jnci.oxfordjournals.org/content/104/1/42.full

Should we drink that coffee or not- the dilemma.

I am wondering what was the whole worrying about caffeine and dca combination  and if it was not  to cause tumor lysis or for some other reason. Here is a link to a study showing that coffeine has some positive effect for glioblastoma. I am not advising anybody to drink just wondering myself what to advise my brother.
http://cancerres.aacrjournals.org/content/70/3/1173.long

SSRI and LEF comments

Steven

Any thoughts on LEF comments:

"There is a chemical made in the brain called glial cell-line derived neurotrophic factor (GDNF). It typically aids the survival of neurons after injury. The problem is that it also helps brain tumor cells survive, and, in particular, gliomas. It also helps tumor cells migrate and invade surrounding brain tissue (Lu DY et al 2010, Song H et al 2006, Wan G et al 2010).

Many antidepressants increase GDNF and thus may help tumor cells survive treatment. A 2007 paper reported that amitriptyline, a tricyclic antidepressant, did so (Hisaoka K et al 2007). Serotonin itself increases GDNF (Tsuchioka M et al 2008). Antidepressants classified as selective serotonin reuptake inhibitors (SSRIs) which increase serotonin levels in the brain, may therefore increase GDNF, increasing tumor survival and helping it spread further into the brain."

My thinking is based on the data available, prozac and sertraline, both being SSRI's seem to have an effect different than being suggested here and at this point the "proof" of negative vs positive effects from these SSRI's is in favor of benefit.

Swelling

What is the best thing to use for swelling/oedema? My dad uses now 16 mg dexamethasone a day, and is feeling fine when he uses it. But they want to temper down the dosage so they gave him a couple days a go half of the dosage a day: so 8 mg. He didn't go react well on it , so now they increased the dosage. But i know he can not take dexa for life becaus of side effects etc. so i am searching for the best brand of boswellia or other things
Any suggestions?

For Those Interested in the Toca 511 Trial

Update 12-05-2015

Well, Friends, it's been a challenge. About a month ago, Chance had a severe seizure while at the gym and ended up in the hospital. Fortunately, we got him transferred to UCSF but a lot of problems resulted.

They increased his Decadron to 16 mg per day and his Keppra to 2500. It was scary. Dr. Taylor wanted him to go on Avastin because the 16 mg Decadron was not sustainable, so two weeks ago, Chance has his first Avastin infusion.

Stephen helped me add DCA and Honokoil, and change the cannabis from THC:CBD to CBD only. We looked to add Chloroquine but I couldn't get a prescription. When I asked Dr. Taylor for a prescription, she resisted because of possible liver toxicity. Stephen countered but in researching, we found Chloroquine sometimes caused vision problems, and that was a side effect we couldn't consider.

Chance's vision has been worsening. For a short time after the last seizure, it was vision and comprehension (left temporal tumor), but ultimately it was blurry vision, both eyes. He loves to read. This was a big loss. We visited a neuro-opthamologist last Wednesday. He had a very kind manner, but broke the news that there was nothing he could do. A field of vision test revealed he had lost a lot of vision on the right side, even though it didn't appear to Chance as right-side loss only. The doctor said it was a function of the tumor. If the tumor gets smaller, his vision could improve.

I was at the bottom of the barrel. Chance had an MRI scheduled yesterday and I was more anxious than ever. Chance, however, couldn't wait for the results - and knew they would be positive. Chance has been working with an acupuncturist (and amazing healer) for five or six weeks. He sees her once a week and it is the high point of his week. She told him this MRI would show improvement, but the next one would show vast improvement. I wanted to believe her, of course, but it seemed nothing was really making his symptoms better.

Yesterday was the longest day. He was in the MRI department over two hours and then there was a long delay before we saw Dr. Taylor. When she called us in, Chance said, "I know why you took so long to call us in. You couldn't find my tumor!" She laughed and said, "Well, not exactly, but your scan was much improved!"

I told Stephen how amazing it was that a few words can change EVERYTHING!

Dr. Taylor believes the Avastin and Toca 5-FC are working perfectly. Chance believes he and his acupuncturist are working perfectly. For me, who cares?! We have improvement the first time since his September scan.

Last night he began his second round of the 399 Toca 5-FC pills. After being at UCSF three times this week, we don't have to return until after Christmas! Our Holidays are looking very happy indeed.

-----------------
Original Post 10-30-2015

Hi,
I mentioned Chance was enrolled in this study earlier, but I thought I would create a Toca 511 thread so I can post his progress.

UCSF identifies the study in this manner: CC#09102 A Phase 1 Ascending Dose Trial of the Safety and Tolerability of Toca 511 in Patients with Recurrent High Grade Glioma.

General information: Toca 511 is a live virus that has been built to carry a gene into cancer cells. This process is called gene transfer. This gene carries instructions that cause the cancer cells to turn the flucytosine (5-FC) into a chemical that may kill cancer cells.

Chance was enrolled in Cohort 7 - the first cohort to receive the virus intravenously. Earlier cohorts required surgery to place the virus in the tumor bed. Chance had an infusion each day for three days (infusion took about five minutes, then you rest in place for one hour before release) on September 28, 29, 30, 2015.

He had no side effects of any kind from the virus infusions.

Last Monday, Chance was supposed to start the 5-FC pills - the next step in the process. Unfortunately he had a seizure at the gym on Sunday night and ended up in a local hospital followed by transfer to UCSF.  He was released on Wednesday, then we returned today to start the 5-FC process.

When we talked about it originally, UCSF staffers said he would have to take a lot of pills during the process. Chance laughed and said it couldn't be more than his mom had him taking already, could it? Today we found out. These are big white pills, and he is to take 19 of them three times a day for seven days (399 pills!). He does this once every six weeks for three rounds. He will get an MRI every six weeks. If the 5-FC is working as it should, he can join a continuation arm of the study (which was a very big selling point for us).

It will be six weeks until we can determine if the 5-FC is doing its job. I'll be back then to update.

(Just for further information, this trial is being offered at a number of sites. They are currently enrolling Cohort #8 for surgical injection into tumor bed. Cohort #9 is the next one to inject intravenously. This time it will be given over five days instead of three.)

Another online pharmacy.

Here is an online pharmacy in UK . It has only good reviews. I don't know if they are legit but they look good to me. They have cream Aldara and some other drugs which you can not find in drFoxpharmacy. What do you think?
http://www.medical-specialists.co.uk/searchproducts.php?searchString=aldara&btnMainSearch.x=21&btnMainSearch.y=10

More support for melatonin

Melatonergic system-based two-gene index is prognostic in human gliomas.

This study shows that two genes related to melatonin biosynthesis (ASMT) and metabolism (CYP1B1) is an independent prognostic factor in gliomas.  This index is expressed as a ratio, and tumors with high expression of ASMT (melatonin synthesis) and low expression of CYP1B1 (which converts melatonin to a metabolite that can be excreted in the urine) tend to have better prognosis.  Higher grade tumors tend to have a lower ratio (ASMT:CYP1B1).

This finding could be viewed as support for supplementing with melatonin, especially for higher grade gliomas.

Will add this study to the Library.

Chloroquine and caloric restriction

According to this study with mice bearing melanoma xenografts, chloroquine works nicely with caloric restriction.




CQ = chloroquine
CR = caloric restriction (mice were given 70% of their normal daily caloric intake)

Caloric restriction to the point of losing weight can't be sustained indefinitely of course, but such a strategy might work well during critical times, such as during the 6 weeks of chemoradiation.

Images from:

Chloroquine-mediated lysosomal dysfunction enhances the anticancer effect of nutrient deprivation.

I'll add this study to the Brain Tumour Library

Ibuprofen and Care Oncology

Hi all,

My Mum was sadly diagnosed with Glioblastoma in July. I have been meaning to post her cocktail here and get involved in this blog, so bare with me, I plan to write a full post this weekend. This blog has been so helpful and Stephens website too so I am keen to start contributing.

I have an update from the COC (Care Oncology Clinic) in London. I went to speak with them yesterday. My Mum is seeing them and they have prescribed the four drugs for her on top of the standard treatment which is great. As I live in San Francisco I was unable to go with my Mum for her first appointment, but as I am over here in the UK for a few weeks I booked an appointment to go and speak with the Doctor there and ask my long list of questions.

One thing that I really wanted to share was that apparently there is a new form of Ibuprofen that is going to become available in the next few months that does not cause stomach irritation. The Doctor said that the COC will be looking at adding this to their list of prescribed medications. They have held off recommending it at the moment as it can cause stomach problems so with this new version they are hoping it will be a great addition to people fighting GBM.

I will let you know if I hear more and if they prescribe it to my Mum in a few months time.

The drugs they prescribe for GBM are Atorvastatin, Metformin, Mebendazole and Doxycycline and they all sound really worthwhile taking. They have been chosen by the COC as they seem to have the least side effects of all the potential complimentary drugs. I really recommend seeing these guys if you are in the UK or contacting them wherever you are in the world.

I will post Mums cocktail soon. She is keen to keep it as streamlined as possible and that is what we are trying right now.

All the best to everyone.

Alison

Cimetidine and Chloroquine Phosphate:
Cimetidine increases the half life of Chloroquine Phosphate so the amount of Chloroquine Phosphate should be reduced.  But I don't know the numbers.  Does anyone have this information?  In others words because my son is taking 400 mg cimetidine 2x daily and 250 mg Chloroquine Phosphate daily, he is getting too much Chloroquine.  Any information would be appreciated.  Thanks!

Would verapamil make Newcastle virus more effective?

We are planning to the the NewCastle virus. Would verapamil make it more effective?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2890100/

Temodar in the morning or in the evening with melatonin.

I have seen lots of publications stating that melatonin can overcome multidrug resistance to tmz. I am wondering if any of you are taking tmz at night with melatonin or are all of you taking it in the morning and what would be a good strategy.

Zinc and p53 activation

We've discussed in the past the possibility that zinc supplementation can change the conformation of mutant p53 back to a more normal state.  There is now evidence that oral zinc supplementation (in mice) can also activate non-mutant p53 and sensitize tumors to chemotherapy (in this study the chemotherapy was Adriamycin (doxorubicin).

The beneficial effect of Zinc(II) on low-dose chemotherapeutic sensitivity involves p53 activation in wild-type p53-carrying colorectal cancer cells

Might not be a bad idea to take higher dose zinc (100 mg) on the days surrounding chemotherapy, with the caveat that the effects of p53 in response to doxorubicin may not be the same in response to temozolomide.

Continuous intake of 40-50 mg zinc daily is said to be safe.

An additional amazing piece of evidence, is that both U251 (mutant p53) and U87 (wild-type p53) GBM cell lines were mostly positive for unfolded mutant-type p53 conformation.  U87 cells were found to have four-fold increased levels of metallothionein 3.  Metallothioneins are zinc-binding proteins.  This zinc-binding activity of metallothioneins likely leads to unfolded mutant-like p53 proteins, even in the absence of a TP53 mutation!

High metallothionein predicts poor survival in glioblastoma multiforme

lansoprazole vs omeprazole

Steven and others

According to the paper you have posted on PPI's, it would appear in their research anyway, that lansoprazole is superior to omeprazole (I understand the potential lack of efficacy crossing the BBB). We are currently using omeprazole 60 mg bid around the time of TMZ use.

My questions:

Is there any reason to believe we should switch to lansoprazole based on this paper?

Omeprazole has been shown to improve the efficacy of DCA.  Is there any information suggesting this activity is unique to omeprazole, or is it more likely a class effect of the drug?

What are people dosing lansoprazole at?   

Thank you!        

Disulfiram and DCA

After Jeremy finishes his 12th round of TMZ end of next month I plan on having his take disulfiram on a daily basis in an attempt to go after CSC's.   Who is using both disulfiram and DCA concurrently and are you have any difficulties with PN?  Are you rotating on and off disulfiram?  The question that comes to my mind is whether disulfiram use intermittently will result is disulfiram resistant CSC (assuming it works at all).  Sort of like taking an antibiotic for a bacterial infection might result in antibiotic resistant bacteria if the drug is not taken for a long enough duration.  But then this has to be considered in light of developing PN.  Additionally, what dose of disulfiram is being used with those combining DCA wand disulfiram?  Any thoughts will be much appreciated.  Thanks in advance.

Some peptide for IDH1 mutant tumors

http://www.nature.com/scibx/journal/v7/n29/full/scibx.2014.851.html

It was suggested to me by a doctor that Xeloda can be used for glioblastoma.

Can Xeloda be used for glioblastoma. Are there any studies showing its efficacy for glioblastoma?

What could be side effects of PD1 inhibitors+ DC vaccines.Choosing immunotherapy clinic.

I am trying to choose a clinic in Germany. Some of them use only PD1 inhibitors in combination with DC Vaccines and others use DC vaccines with tetanus booster etc.
I am wondering what would be pros or cons of one versus another. Debating if to go for expensive PD1 inhibitor and peptide vaccine with unknown side effects or tetnus booster and peptide vaccine. Some of those clinics use 2 checkpoint inhibitors at once plus peptide vaccine. The side effects on nivo site seem scary. On the other hand tetanus booster plus cmv did not have any.

Hoxsey Clinic

Needing opinions out there...a friend of mine recently advised me to check out the Hoxsey clinic in Mexico.  I've researched it quite a bit but just wondering if anyone has heard of this clinic and/or visited.  Stephen, I know you are the "man" and hoping you could shed some light on the subject?  Curious if their tonics and supplements are similar to some most of us have in our cocktails. Thanks for your help!
Daphney

Any idea how to raise white blood counts?

Any ideas how to raise white blood counts or which drugs could be lowering it?
I am planning to start folate.

Rich cocktail

 I think we never posted Rich cocktail. That one is especially important for people with unmethylated tumors.

Stephen W edit: 
this info was taken from page 2 of the Glioblastoma...Our Cocktail & Story thread at Cancer Compass. The post is dated November 13, 2013.  The "if I were to do this again" part at the bottom is therefore not necessarily accurate today, but we will let Rich make changes as he sees fit.


- Temodar (temozolomide), 80mg/day (calculated by 40mg/m**2/day)
- Avastin (bevacizumab), 10mg/kg at 21 day intervals

- Chloroquine Phosphate, 250mg/day

- Celebrex (Celecoxib), 600mg/day

- Verapamil, 480mg/day

- Accutane (13-cis-retinoic-acid), 160 mg/day, 14 days on, 7 days off

- Tagamet (cimetidine), 800mg/day

- Melatonin, 20mg/day

- Coriolus versicolor extract PSK/PSP, 3g/day

- Maitake-D mushroom extract, 1200mg per day

- Reishi mushroom extract, 2.5g per day

- Resveratrol,  20mg per day

- Green Tea Extract, 4g per day

- Selenium, 200mcg per day

- Soy Extract, 5g per day

- Fermented Papaya Extract, 1000mg/day

- Silibinin extract, 2g/day

- Curcumin/tumeric extract: 800mg/day

- Gamma-Linolenic Acid (GLA) Extract, 3g per day

- Omega-3 Fish Oil Extract, 3gm per day

- Fresh aloe vera (drink/mixed aloe, water, honey and grappa),1 cup/day

- Standard multivitamin capsules, time-release

- Vitamin D, 10,000 IU/day

- Aspirin, 200mg per day

- Brewed Green Tea, aprox. 2 liters per day

But if I were to do this again, I would now also consider adding (at least) the following:

- Metformin, which regulates uptake of glucose

- Disulfiram, which inhibits p-glycoprotein extrusion pump and block glioma cell signal pathways

- DCA, which inhibits glycolysis

- Valproic acid (depakote), a known HDAC inhibitor, and potentially reactivates p53

- Chlorimipramine, which selectively blocks glioma mitochondrial function

PDE5 inhibitors

How are people utilizing these?  Just around chemo days or daily? 

I NEED HELP

i just received the news about my fathers latest mri.
3 weeks ago they said it was operable, and we wanted to do dendritic cell therapy but in that hospital they didn´t want to give the tissue.
so we scheduled a new appointment with another hospital my dad got a new mri and now they say its inoperable and it spreaded.
 I AM SO DEVASTATED !! WHAT CAN I DO, IS THERE STILL SOMETHING I CAN DO?
I think i read a while ago about some kind of morphine that causes regression please help me

63 y/o male w/ GBM.. update 1/2 way thru chemo/rad. Echoes?

Hi -

Tomorrow is day 21 of 42 and Dad is still alive and still taking his meds (see previous post for my cocktail).

Some observations - his speech and gait are marginally better.  For the past two weeks both the Oncologist and Radiation Oncologist (RO) commented each week that he is doing a littler better than the previous week.  The RO said that he is cautiously optimistic.  Dad holds steady at a 3 of 5 for strength on his right side.  His thinking is sharper - my husband noticed that Dad doesn't pause as long while speaking, he used to really grasp for words and now he gets them out (or tries) faster.  Dad told me that his brain is working better.  No pain, no seizures.

Now for the concerns...  Dad said he's hearing things.  I'm not sure if he's hearing voices or just that what he does hear echoes.  Does anyone else have this experience?  I'm not sure if the cocktail could cause it, or radiation(?)  I hope I'm not making him schizophrenic.  Also he has been nauseous lately - which is new for us.  The only recent changes to the cocktail were the additions of Reishi mushroom, Prozac, and I also got a new script for Plaquenil (he was taking pills that had expired in 2010). I'm on safari as we speak ;-)

Thanks all.
Annie


_______________________________
Backstory:  Diagnosed August 25th, scheduled for awake craniotomy Sept 17th, was ready with the 'donuts' marked on head, IV going, then Dr. came and told us the MRI showed the tumor had quadrupled and surgery was really not an option.  EEG was borderline to begin with.  We were sent home devastated.  The very next day dad had a severe decline - our worst day yet. Dry heaves, pain that would not cease with oxycodone every 2 hours, complete loss of use of right side.  Upped the dex one time (10mg) and thankfully recovered.  Started chemo/radiation three days later.  Were told to try Avastin or to wait for a 'rainy day' as Dad has not declined while on treatment.  So far we wait. I can be persuaded to start if anyone has a strong case for it.

Ahmad's chemo cocktail

Hello Stephen and everyone..
I am sharing Ahmad's chemo cocktail..
Ahmad dx 12 October 2014..we had a recurrence and another surgery last June..
Finished radiation 19 August and started CCNU with a cocktail following Ben William's footsteps.

Drugs:
1.Ccnu
2.Tamoxifen 220 mg/day
3.Chloroquine phosphate 250 mg/day
4.Verapamil 480 mg/day bracketting CCNU
5.Prozac 20 mg/day
6.Lansoprasol, esomeprasole, omeprazole: alternatevely 1 each month..(protocol suggested by Anders: each week begins by high dose then standard then a day off)
7.Aspirin 200 mg/day
8.Accutane (still we did not start it) 120 mg/day 2 weeks on and 1 off except chemo weeks.


Supplements:
Milk thistle 900mg/day
Mushroom PSK 3g/day
Curcumin longvida 3600 mg/day
Omega 3 fish oil 3g/day
Pterostilbene 300 mg/day
Broccoli 1000 mg/day
Boswellia 1200mg/day
Green tea 4g/day
Selenium 200 mg/day
Genistein 5g/day
Garlic 6mg/day
Vitamin D3 2mcg/day
Vitamin C 2000 mg/day

Ahmad is following a ketogenic diet

Ahmad did not have any side effects..except recently when we introduced Prozac..I have the feeling this medication is making restless..and very nervous..I am not sure..
I need feedback from those taking Prozac (fluoxetine)..is this dose 20mg enough? And will the side effects reduce with time? I am also worried when using with verapamil..should I reduce the verapamil to 280 mg??

We will start Accutane after next round of CCNU..
God bless u all..and help us in our battle.

CBD

hello everybody,

I read that many of you have cannabis oil in your cocktail.
Is CBD without THC also effective? dont quite understand the posts I read about it..
My dad takes CBD drops.
Thanks
kind regards,
Lycka

DCVax

Dear friends,
If the DCVax is available at presentation, would this be a favoured option (in addition to standard chemoradiotherapy).  Some are suggesting waiting until relapse, though I don't see the point of waiting.
Thanks for your thoughts
Matthew.

Giant cell gbm

Can someone explain to me what giant cell gbm is ? does this have a better prognosis then regular gbm?

cusp 9 protocol,

Hi all, 1....artesunate 50 mg p.o. twice daily 2....aprepitant 80 mg p.o. twice daily 3....sertraline 50 mg p.o. twice daily 4....captopril 50 mg p.o. twice daily 5....auranofin 3 mg p.o. twice daily 6....nelfinavir 1250 mg p.o. twice daily 7....temozolomide 25 mg/M 2 p.o. twice daily 8....disulfiram 250 mg p.o. twice daily 9....copper (cupric) gluconate 2 mg p.o. twice daily 10...ketoconazole 200 mg p.o. twice daily This was the original CUSP9 version (2013). They are now on version 3. ritonavir replaces nelfinavir celecoxib is in, copper gluconate is out itraconazole replaces ketoconazole minocycline is in, artesunate is out The third CUSP9 paper should be published fairly soon. Stephen, we could use this info? Melinda.

Befungin some Russian Chaga extract

There is someting called Befungin which is and extract of Chaga, tree funges. I am not sure if it would work for Brain tumors.

Ukrain

http://www.fonteine.com/ukrain.html

Opinions about ukrain ? Seems to be effective in brain tumors.

Cocktail Supplements when Pregnant

My wife has a Grade 3 anaplastic astrocytoma. We had just started on the cocktail approach when we realised that she was pregnant!

So my question is whether anybody has been in a similar situation or come across any information/research on whether cocktail supplements/drugs are fine to have during pregnancy?

We will probably err on the side of caution and not having anything during the first trimester, but if there is reasonable evidence that particular supplements/drugs are OK for pregnancy, we are hoping to restart at least a few of these supplements after the first trimester.

Here is the list of supplements/drugs that my wife had started having. I have bucketed it up into “Unsure” and “Probably OK” (self-explanatory).

Unsure

·         Reishi
·         Maitake
·         Turkey Tail
·         Shiitake
·         Curcumin
·         Zinc
·         Selenium
·         Green tea – I think high quantities is not recommended because of caffeine content

Probably OK:

·         Vitamin D3 (part of pregnancy multivitamins)
·         Fish oil (part of pregnancy multivitamins)

In Australia, there is a Therapeutic Goods Administration guide to drugs for pregnancy, but the guide doesn’t really contain the natural supplements and drugs.

Any guidance or help would be much appreciated!

P.S. It doesn’t help that most of the packaging has generic statements such as “If you are pregnant, we advise you consult your doctor before taking this supplement”…

FDA approves Optune for NEWLY DIAGNOSED glioblastoma

Al already sent this out on the news blast and I just did an update on Astrocytoma Options, but here it is again:

FDA Approves Optune in Combination with Temozolomide for theTreatment of Newly Diagnosed Glioblastoma

First therapy to be approved for newly diagnosed GBM since TMZ was approved on March 15, 2005.

DNX-2401 virotherapy plus PD1 antibody trial

Many of you probably already saw this on Al's news blast, but I wanted to post it here too:  a new phase 2 trial will be testing DNAtrix's DNX-2401 virotherapy with Merck's PD-1 antibody pembrolizumab (Keytruda).

http://www.businesswire.com/news/home/20151001005478/en/Merck-DNAtrix-Announce-Phase-2-Immuno-Oncology-Collaboration#.VhMY6vlVikp

This will be the second trial to combine a PD-1 antibody with a second immunotherapy (the other is Duke's trial combining their CMV-targeted dendritic cell vaccine with nivolumab, plus pre-conditioning of the vaccination site with tetanus/diptheria toxoid.

https://www.clinicaltrials.gov/ct2/show/NCT02529072

These are just the sorts of combinations we need!

Omeprazole blocking absorption of other drugs?

Hi -

Our primary Dr. (not NO) told me to stop giving dad Omeprazole as it blocks the absorption of our other medications and supplements.  Does anyone know if this is true?  The only conflicts I've seen online are the absorption of calcium, magnesium, and vitamin C.  We now give Dad Ranitidine, but I want to add the Omeprazole and Priolsec back in assuming they aren't negating any other supplements or meds.  He was taking 60mg twice a day of Omeprazole.

Thanks much.
Annie

Metformin and temozolomide act synergistically

Metformin and temozolomide act synergistically to inhibit growth of glioma cells and glioma stem cells in vitro and in vivo  (click on this link)

Unfortunately this was another flank-injected, non-orthotopic mouse model, and used an overly high metformin dose of 400 mg/kg mouse body weight.  The mice were immunodeficient SCID mice.  Still, most of us here are using metformin anyway, so this is additional encouragement.  See especially figure 7A on page 10.

Pao Pereira, some extract but I'm not sure if it would work for Glioblastoma

Here is some extract. The study was for pancreatic cancer but I wondered if it can be of any value for Glioblastoma

https://beljanski.org/francais/wp-content/uploads/2015/01/Inhibition-of-pancreatic-cancer-and-potentiation...Pao-Pereira1.pdf

http://www.townsendletter.com/Dec2011/integratoncology1211.html

Magnetic field therapy?

Apologies - this is not specific to cocktails, but I consider this audience the most educated on GBM and would like your opinions.  Has anyone looked into magnetic field therapy?  I was reading in the Alternative Medicine Definitive Guide to Cancer about Dr. Philpott and magnetic field therapies. I can't find much out there confirming benefit and the anecdote in the book was brief and vague, but wanted to run it by you all in case someone has experience with it.  Here are a few links:

http://drjockers.com/bio-magnetic-therapy/

http://www.azunimags.com/about_dr_philpott.html

I am considering the hat as it looks similar to the Novocure but of course much cheaper.

Thanks all.
Annie

I assume you can't buy that minerval anywhere

http://www.lipopharma.com/index.php/en/products/minerval

Killer Cocktail Fights Brain Cancer

Steven

Ok, I admit the title of this post lacks specificity, but I took it from the title of the article.

Are you aware of any additional research with the combination?  Looks very interesting.

http://www.sciencedaily.com/releases/2013/11/131125121143.htm

Need your advice -- regrowth

Hi all,

Today's MRI finally showed the reason why I almost lost my ability to walk or use hands. Surprise! Regrowth is here at the original site (brain stem). The MRI done just three weeks ago showed almost no tumor left, but I kept declining. My symptoms are quite different from the ones I had in February, but now it does not matter.
I need your advice about what to do next. On Monday they are having a consilium but I think they will just put me on Avastin, which I hesitate to do at the moment. We also discussed Optune but my NO thinks that a) It might not help, giving the location of the tumor and b) Our insurance will not pay for it. I, too, am not really ready to shave my head just yet :)
We called to Duke and MD Anderson right away, but they all want me to come over to discuss options.
Are there any trials or other options you would recommend?
Thank you. 

Gliomas, Allergies, Immune System

Here a fascinating study comparing the relationship between gliomas, allergies, and the immune system.

http://journals.lww.com/oncology-times/Fulltext/2015/10100/Evidence_of_Immune_Function_Changes_Years_Before.9.aspx

Grace and Peace,
Danny