Sunday, 29 November 2015


Does anyone have information on butyrate and cancer?  Specifically gliomas?  I have not added this to the artemether I have given Jeremy, but professor Singh strongly recommends butyrate be taken with artemisinin and its analogs.

Valcyte and chemo

I have a question for those who took a chance and tried Valcyte for the cmv virus.  Did toy start during chemo? What were your symptoms ?

Saturday, 28 November 2015

Some pharmacy with Disulfiram

I saw on another site that people buy Disulfiram in this pharmacy supposedly without prescription. I don't know if it is a good pharmacy or not.

Friday, 27 November 2015

Longvida study

Here's a new human study with Longvida curcumin (400 mg daily of the formula amounting to ~ 80 mg curcumin content) showing improvements in mood and memory. I've already uploaded to the Library (Quality of Life folder).


This was a randomized, double-blind, placebo-controlled trial, which was nominated for a University Research of the Year award.

Antipsychotics for glioblastoma?

Scutellaria in vivo

Thursday, 26 November 2015

Moringa oleifera some tree

Moringa oleifera some tree but I'm not sure if would be of any help for brain tumors.

How about sea cucumber

Some article about sea cucumber

How about Modified Citrus Pectin

How about Modified Citrus Pectin. Would it get to the brain?

Wednesday, 25 November 2015

Tamoxifen + TMZ + Avastin

i am taking a metronomic dose of TMZ (80 mg per day) and get Avastin every two weeks.
I have recently added Tamoxifen (currently 20 mg bid, will be increasing to 30 bid tomorrow)
Is it ok to take those three together?
Thank you

Monday, 23 November 2015

MRI results... we have shrinkage (!)

Hi - !
Today marks 3 weeks post chemo/radiation and our first post treatment MRI.  The tumor perimeter was visibly smaller.  The NO took a measure of the 9/17 MRI which was 49 (mm? cm?) and then took a measure of today which was 40 of the same measurement.  He also commented that the tumor center looked like it was dying.  I'm not sure how he could tell but my mom is an RN and said she could tell too.  The NO believes this all to be the work of the Avastin - which we have had 2 doses of to date.  When I asked if the Temodar or radiation were also helping he said that it was clear to him that this was the work of Avastin.  I still don't fully understand why he concluded that other than experience.  So now he wants us to stop Temodar (or rather not re-start Temodar) and just keep the Avastin.  Is this wise?  I feel really uneasy about that.  The reason being - Dad is feeling crappy and the NO believes the Temodar exacerbates his symptoms through extreme fatigue, poor appetite, body pain (Dad is in a wheel chair or seated all day - body cramps up).  That's really it.  I thought Dad tolerated the Temodar fairly well (no nausea).  What do you guys think?  Should we stop Temodar?  Dad will keep taking it if it is indeed helping.

Thanks -

Sunday, 22 November 2015

Metformin and autophagy


I was doing a bit of information gathering on AMPK activators, of which metformin is one, and came across information that  metformin is an mTOR inhibitor and and autophagy inducer.  The autophagy inducer information I found interesting.  Any idea how potent this action is and whether it mitigates autophagy inhibition by chloroquine?

Saturday, 21 November 2015

Melatonin in UK without prescription

It is easy to get melatonin without prescription in US but this is so funny in UK they can't sell it as melatonin so they sell it as "natural hormon" funny . I like that pharmacy

Friday, 20 November 2015

Which mutations to test for?

Hello guys!

I have surgery of my low grade glioma scheduled in less than 2 weeks, but the neurosurgeon told me they don't test for many mutations/markers unless I specifically ask them to.

At the moment I know of:

-MGMT methylation

Is there any other mutation/marker I should ask them to test?

Your help is greatly appreciated,

Thursday, 19 November 2015

Fistula post Surgery

Hi, anyone faced a fistula after surgery? Almost one month after her surgery, she started to drain some CSL for a tiny hole in the scar. We were really scared, but NS then explained us that is something that often happen, but is manageable. She is taken now acetazolamide lo decrease CSF production, glue for skin, sticky strips and pressure bandage.

Synthoms she had:

  • Fever.
  • Headache when moving.

Thanks for your comments.

Metronomic TMZ

Hi, just posting this in order to know if someone else is on Metronomic TMZ too. My wife has started 2 weeks ago with this protocol (50mg/m2) also concurrent with Avastin 15 mg/Kg/21d. Since the first infusion she got improvements on her left side, she has to deal with some level of hemiparesia after surgery on Oct-19

Would like to know if someone else is experiencing fatigue, tiredness or lack energy  due to the accumulation of TMZ in this schedule, or maybe the window between Avastin's infusions is too big (21d) and she is not able to keep a stable level in blood and the effect goes off after 10/14 days.


Wednesday, 18 November 2015

Bladder infection while on the cocktail

My brother has a bladder infection and the doctor is recommending cephalosporine before the next round of chemo. Should we stop all the cocktail drugs to take that drug. Anybody knows if there would be any interactions with all the drugs? And some of them stay in the system long.

2015 abstracts from Society for Neuro-Oncology conference

The 2015 abstracts have been published.  I will use this post to summarize the most interesting abstracts, and will continue updating it as I read through them.


 "GBM spheroids were implanted orthotopically in nude rats...

 Our results show that CBD treatment down-regulates HIF 1 alpha under hypoxic conditions in vitro and in vivo. Combination treatment with CBD and bevacizumab decreases tumor growth and intratumoral hypoxia in clinically relevant human GBM xenograft models."

CBD of course refers to cannabidiol, derived from the cannabis plant.  Bevacizumab is the generic name for Avastin.


"We also have compared the therapeutic efficacies of mebendazole and vincristine against GL261 orthotopic [mouse glioma] tumors at their respective maximum tolerated doses (respectively 100 mg/kg/day and 1 mg/kg/week). We found that mebendazole showed a 61% increase in animal survival time, whereas vincristine failed to show any efficacy.However,we did observe significant neuropathy (as measured by sensory allodynia) induced by mebendazole treatment, similar to that caused by vincristine."


"In vivo, duloxetine inhibited S100B production, altered polarization and trafficking of macrophages and abrogated the growth of intracranial GL261 gliomas." 


"HGGs (N = 35) had markedly higher aromatase expression (>50%) relative to LGGs (N = 19). It is important to note that all the GBMs (N = 21) showed high CYP19A1 [aromatase] expression, whereas the normal tissues and meningiomas had negligible expression. Secondly, letrozole, a widely used aromatase inhibitor in the treatment of ER+ breast tumors in post-menopausal women exhibited excellent brain and brain tumoral penetration and anti-tumor efficacy (assessed using mPET/CT) in rats orthotopically implanted C6 malignant glioma cells. Furthermore, glioma-bearing rats (N =10) treated with letrozole (4 mg/Kg;i.p.injections) had long term suppression with overall survival exceeding 65 days and no signs of overt toxicity. In contrast, control untreated rats (N = 6, 2ml/kg vehicle i.p. injections) developed significant morbidity/mortality in 15-20 days. Overall, our studies strongly suggest that aromatase is a new “druggable target” for treatment of HGGs and that letrozole can potentially be readily used for this purpose."

Why does Avastin disqualify from many clinical trials?

I feel like I knew the reason at one point in time but it seems to have been removed from my brain. We held out on Avastin as long as we could but now that my mom has started (1st infustion 11/3/15 2nd infusion 11/17/15) I'm curious why this will exclude her from many clinical trials.

Avastin use would have eliminated her from participating in the Toca 511 Trial (virus injected directly into tumor cavity after tumor was removed) she was/is part of at UCLA in May 2015. However, her recurrence by November 2015 with multiple new lesions made turning to Avastin pretty much a no-brainer as options are running out.

There are a number of trials that are ok with prior or current Avastin use but many of the ones that sound promising require no prior Avastin use. Why is this?

Avastin inhibits growth of the blood vessels that feed tumors. Is it thought that the medicine (chemo, virus, immunotherapy) can now no longer reach the cancer?

Tuesday, 17 November 2015

Cocktail + lomustine&TMZ

Hi everyone,

My mom was recently diagnosed with GBM so I'm trying to catch on the latest and greatest treatments I can get to her. According to the pathologist, her tumor was MGMT methylated.

She's in her last two weeks of radiation now and her meds are
- Temodar
- Chloroquine 250mg/day
- Longvida curcumin (just started that, she was taking regular turmeric capsules until this order came in)
- Boswellia (maybe one capsule a day, not much)
- Vitamin D 2000 iu/day
- Melatonin 10mg HS

As she comes to the end of radiation, I'm discovering that she might not qualify for some of the vaccine trials going on right now so I'm wondering if any of you know much about the trial that combined Lomustine & TMZ and if you have any feedback on that or other combinations for newly diagnosed GBM that she can inquire about.

I'd also appreciate any ideas you have for her and any meds that would be helpful to add to her cocktail.

Thanks so much for reading.



I didn't see a topic about artemisin yet, so I am opening one.

On the following link is a journal regarding antitumor acitivty or artemisin:

It is fairly long, I will just copy paste some parts:

"Artemisinin and its analogs are naturally occurring antimalarials which have shown potent anticancer activity. In primary cancer cultures and cell lines, their antitumor actions were by inhibiting cancer proliferation, metastasis, and angiogenesis. In xenograft models, exposure to artemisinins substantially reduces tumor volume and progression.

One major obstacle for a successful anticancer therapy is the development of resistance over time. Many aggressive tumors become refractory to anticancer therapy with hardly any chemotherapeutic alternatives. A leading cause of drug resistance is the drug efflux generated by overexpression of membrane protein pumps, which results in ineffective low drug concentrations [108]. Anticancer activity of artemisinins has shown to be unaffected in otherwise resistant and multiresistant cancer cells"

I came across artemisin when friend's grandfather got me a tea from artemisia annua ( ), he also said I should take iron supplement when I drink it - folk's medicine like Stephen calls it :)

"In most of the systems, preloading of cancer cells with iron or iron-saturated holotransferrin (diferric transferrin) triggers artemisinin cytotoxicity [32–35] with an increase in artemisinin activity up to 100-fold in some cell lines [36].

Continued proliferation and growth of malignant cells require higher iron metabolism to achieve processes of cell survival [35].  Therefore, cancer cells exhibit an increase in transferrin receptors (TfR) which are responsible for the iron uptake and regulation of intracellular concentrations. Levels of expression of TfR in cancer cells may vary depending on the cell line. However, they differ substantially from normal cells leading to a high selectivity index of artemisinin and its derivatives. Efferth et al. reported that leukemia (CCRF-CEM) and astrocytoma (U373) cells express TfR in 95% and 43% of the cell population, whereas normal monocytes only account for approximately 1% [42, 43]. "

Does anyone have any experience or knowledge on artemisin?

Monday, 16 November 2015

Lomustine, Carboplatin, Irinotecin... which would you pick?

All -

Dad's oncologist believes that given his decline while on Temodar we should try another option for our next round of chemo in a few weeks.  She said that the choices are Lomustine, Carboplatin, and Irinotecin.  Dad is also taking Avastin (started last week).  Our full cocktail is posted to this blog.

If you had the option to 'pick', which would you push for?  We don't have any genetic testing.  Dad's tumor had a biopsy but no surgical resection.  I've been trying to obtain his MGMT methylation status but it has been nearly impossible to request the test.  Lots of back and forth with nothing.

I'm now beginning to research these three options but want your opinions as well.

Thanks as always..

Sunday, 15 November 2015

Low Grade and Stable

I've asked this in multiple places and struggled with this for a while. So forgive me if you've seen and already replied either on the CC board or brain trust email.  I have oligodendroglioma with 1p/19q deletions, IDH1 mutation, CIC mutation, and TP53 mutation (this one is a mystery). I have residual tumor from 2010 surgery. Did radiation and Temodar in 2011 with no visual reduction. I've been stable for 5 years. Over that time I've experimented with Zinc, Curcumin, PSK, Cimitadine, D3, Metformin, low sugar diet, Melatonin, green tea extract, etc. I know many of these are benign, but I'm feeling like cutting back. First, this is a little pricey to do long term when unsure of benefit. Second, though I like to be proactive, I kind of just want to simplify and stop looking for whatever I can do and just enjoy being stable. Third, when/if recurrence happens I don't want to minimize the benefits of some of these because I took them all this time. As far as other meds, I'm taking Lamictal and Vimpat for my auras. Just looking for any feedback.

Saturday, 14 November 2015

Drug could limit spread of deadly brain tumors

Study shows PPF could help treat glioblastomas by sensitizing tumors to chemotherapy, radiation treatments

November 13, 2015
The Translational Genomics Research Institute
In a significant breakthrough, researchers have identified a drug, propentofylline or PPF, that could help treat patients with deadly brain cancer. They report that PPF works to limit the spread of glioblastoma multiforme, or GBM -- the most common primary tumor of the brain and central nervous system -- by targeting a protein called TROY.
Not sure if any one else already posted. Believe it says it's already been FDA approved. So, may be something to consider adding to a cocktail? Thoughts? 
  1. Hope I posted this right as first time trying. :-)

Wednesday, 11 November 2015

We just made MRi, waiting the result

Hi , I am Melinda , Corneliu's wife, He it feels fine already 1 year, We hope the result of the MRI will look exactly like it feels so well. :) Melinda.

DC/NDV + TTF + maintenance TMZ....thoughts?

Hi all,

I'm 54 from Scotland, diagnosed in August with over 90% resection and am on my last stretch of radio/chemo before starting TMZ 5/28 for 6 months in December.

I'm currently in the position of deciding if i should start TTF therapy alongside maintenance, undergo DC&NDV vaccine at IOZK with maintenance, or embark on all three at once?

Any thoughts would be very much appreciated as i hear evidence for both  TTF and DC treatments working well with TMZ, i just don't know if it would be wise to combine them all. If that is the case, which would be more 'worth' it? If TTF doesn't work well with dexamethasone due to its immunosuppressive effects would it be better to support the immune system with the DC vax first?

Thank you for any thoughts on this matter, i aim to join you all and get my cocktail up soon!


Does tamoxifen cause urine incontinence?

Hi everyone this is Sarah wife of Ahmad
We r good still on the cocktail posted scan in December.

He is currently suffering from urinary incontinence ..we r suspecting high dose tamoxifen for this..Stephen, and everyone do u have any information??

Monday, 9 November 2015

Stomach acid and cancer.

Just finished watching some video. The doctor was kind of selling supplements but also gave lots of information which  I think might be truth. I will attach the video tomorrow.
So he says that the cause of cancer is oncogenes and cancer suppressor genes being turned off. Stomach acid (Chydrochloric acid) is a source of methyl groups which we need to have to avoid those bad oncogenes being turned on. So what we need is acidic stomach and alkaline body. So according to him some people get worse on gersons diet full of veggies because they already have not enough of that acid and such diet would further decrease the stomach acid production and would make the cancer they have worse because there will not be enough methyl groups. So he says to really know what diet would work for each patient we need to do some testing to determine stomach acid level and body ph. I am wondering how all this fits together with all of us taking PPI's which will shut down stomach acid production.(I just swallowed some omeprazole for my gastritis)

Portable ultrasounds to open the BBB?

So the news today was about ultrasound opening the BBB. There are some portable ultrasounds for $100. Any thoughts?

Micronutrient mix ?

Here are 2 studies on micronutrient mixtures and glioma.

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.


Sunday, 8 November 2015

CARIS report


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
Pyro SEQ

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.

Friday, 6 November 2015

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:
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.

Thursday, 5 November 2015

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:

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


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?

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


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.

Wednesday, 4 November 2015

Storing DCA

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?

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,


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


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.

Tuesday, 3 November 2015

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.

Pterostilbene100mg2 tabs7:30 AM
Keppra500mg1 tab7:30 AM
Dexamethasone4mg2 tabs7:30 AM
Metformin500mg1 tab7:30 AM
Selenium200mcg1 tab7:30 AM
Verapamil180mg1 tab7:30 AM
Depakote500mg1 tab7:30 AM
Green Tea Extract500mg3 tabs7:30 AM
Ranitidine150mg1 tab7:30 AM
Reishi500mg6 tabs7:30 AM
Quercetin500mg3 tabs7:30 AM
Reservatrol125mg1 tab7:30 AM
Omeprazole20mg1 tab7:30 AM
Disulfiram250mg1 tabNOON
Copper2mg3 tabsNOON
Coriolus Versicolor (PSK)600mg2 tabsNOON
Tumeric (NRF2)600mg2 tabsNOON
Curcumin750mg1 tabNOON
Celebrex200mg1 tabNOON
Chloroquinine (Plaquenil)200mg1 tabNOON
Pterostilbene100mg2 tabsNOON
Pterostilbene50mg1 tabNOON
Multi Vitamin1 tabNOON
Sulfamethoxazole1 tabM/W/F   NOON
Vitamin D35000 IU1 tabNOON
Green Tea Extract500mg3 tabsNOON
Lycopene10mg1 tabNOON
Maitake1000mg2 tabs5:00 PM
Reishi500mg4 tabs5:00 PM
Green Tea Extract500mg2 tabs5:00 PM
Coriolus Versicolor (PSK)600mg3 tabs5:00 PM
Keppra500mg1 tab5:00 PM
Dexamethasone4mg2 tabs5:00 PM
Depakote500mg1 tab5:00 PM
Metformin500mg1 tab5:00 PM
Ranitidine150mg1 tab5:00 PM
Fluoxetine20mg1 tab5:00 PM
Stool Softener100mg1 tab5:00 PM
Melatonin10mg2 tabs7:00 PM
Zofran8mg1 tab7:00 PM
Viagra.25 tab7:30 PM
Temodar140mg1 tab8:00 PM
Temodar20mg1 tab8:00 PM

Monday, 2 November 2015

TMZ synergy with oncolytic virus.

Synergy of tmz with oncolytic virus? Will it aply to newcastle virus?

Sunday, 1 November 2015

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.

SSRI and LEF comments


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.