Hi to everybody. My 69-year-old mother was diagnosed with glioblastoma in december 2018. We realized that she was missing a few words in reading, writing and talking and having constantly headache. It was operated on 12/27/18, when approximately 90% of a tumor was removed. She never had any seizures. After the surgery she had a considerable improvement in writing and reading and did not fell any more headaches, despite having presented a little tremor in her hands. Radiation therapy started on 01/23/1919 and was fractionated in 15 sessions. The first cycle (21 days) of temodal (temozolamide - TMZ) chemotherapy was started on 05/02/19.

Since the surgery she has been taking:

- Omeprazole
- Pure (she has hypothyroidism)
-Paroxetine
- Depakene 500 mg twice a day
-dexametazone just one per day
zolpidem

and supplements:
- magnesium chloride
-D vitamin 10,000 cu
- curcurum (curcumin)
-Omega 3
metatonin (15) at night

started recently:
resveratrol
1 clove garlic, raw

and will start:
-Beta Glucan
-artemisinine
-genysteine
sibyllin


We are thinking of associating acetatalozamide with the next cycles of temozolomide.

I would like you, or someone, to evaluate, and please and if possible make some comments and suggestions.

Note: We have not taken the MGMT exam yet.

thanks in advance

Information on DCA and methadone

Hello all,
I'm looking for information on DCA. My dad was diagnosed with an inoperable glioblastoma in December 2015. He's doing pretty well at the moment and we're happy with his treatment. But we want to be prepared for the worst case and that's why I'm interested in DCA.
We live in Germany and as many other cancer patients my dad is taking methadone as part of his cocktail. That's also my main concern because I couldn't find any information on whether methadone and DCA can be combined (I read that you need to be careful with cannabinoids which could be problematic as methadone uses the same receptors). My dad's tumor was stable for a year and then started shrinking in December 2016. As you can imagine we're extremely happy and don't want to omit any of the drugs he's taking at the moment:
- Temodar (still on 5/23)
- methadone
- Optune TTF
- dexamethasone  (tapering 0,5 mg)
- Omega 3
- Vitamin D
- Levetiracetam
- Coriolus versicolor (PSK)
- broccoli sprouts
- Eliqius (blood-thinner)
If you have any information on the combination of DCA with our cocktail, please let me know. I'd also like to know whether you really have to be careful with the dosage in brain tumor patients. I read some really scary stories online, they said that the combination of DCA and caffeine was dangerous.
Thanks a lot!!

GBM treatment options with a moderate budget

My 29 years old husband was diagnosed on 3/26 with a multifocal, thalamic GBM. We are from Hungary. He has undergone surgery on the 5th of April. 80% of the walnut-sized tumor was resected from his thalamus. His other, frontomediobasal tumor seems to be inactive (although it's pretty big, too) so the surgeon didn't resect it and it didn't received radiation either. He has completed SOC and currently is on his first cycle of 5/23 TMZ monotherapy. He has no EGFR amplification. His tumor is IDH negative and indeed very aggressive. Only 3 weeks after surgery he was hospitalized because of edema which was caused by tumor regrowth. So now he has quite a few smaller tumors around his thalamus besides the remaining 20% piece. 

His first post-radiation MR is scheduled for the middle of August. Since I've not yet received the information regarding his MGMT methylation status (long story) I'm constantly worrying and seeking for opportunities in case of tumor progression since in my country there's no protocol for recurrent glioblastoma other than Avastin. I mean no PCV or other chemos, no immunotherapy, no clinical trials, no Optune device (I requested an offer from Germany and it turns out that it costs 30 000 € /months and you need a technical and medical support at home).

I'm aware that we need to manage our finances cleverly in this situation. If you had up to 20,000-30,000 USD which option or options would you go for?

- Immunotherapy in Germany (It seems to me that only Nesselhut Clinic fits into our budget but reviews are not so convincing as nothing in the world of GBM.) 

- Keytruda / Opdivo immunotherapy + TMZ 

In Hungary it's not part of the protocol but hopefully we can find a doctor who will prescribe it at our own expense. As I can see Opdivo has kind of failed; is Keytruda. better? Do we need PD-L1 testing to get it?

- We have gamma knife in Hungary and it can be paid through National Insurance (so patients who qualify don't need to pay for it) but doctors are reluctant to let GBM patients to choose this option. It's usually used for small and simple tumors and for brain metastases. If our NO will advise against it or will be not so eager to help maybe I can search for other European gamma knife possibilities although I can't find too many comments on gamma knife and GBM.

- Neuroblate Laser Ablation. As far as I know it's exactly for problematic tumors, like thalamic ones. I'm planning to send them an inquiry but I have concerns about whether it is an adequate alternative to surgery for inoperable tumors. Can it prolong life or is it just a palliative treatment? How much would be the estimated cost? Has anybody personal experiences with it? Is laser ablation superior to gamma knife? 

Our NO said my husband's thalamic tumor is no accessible for surgery anymore and considering his bad reaction to the first surgery maybe laser ablation or gamma knife wouldn't be the best option for him. What are your thoughts on it? 

- SPMF treatment in India. It's quite cheap but no statistics are available and it's so hard to believe for me that the same effect is achievable with 1-2 hours of treatment for 28 days as with the Optune cap which you need to wear almost all day long up until it works. I've read about a young patient with thalamic tumor on Inspire who had Optune and it didn't do any good for him because of the location. I suppose that the same applies for SPMF, too. 

- I sent an inquiry to Duke's polio virus trial.

My clinical trial applications have been ignored from all over the world so I was tricky enough to mention that "I'm aware that non-U.S. citizens should cover their costs on their own in case of qualifying for a clinical trial and I hope I can manage it with the help of my family. "

I got this answer from doctor Friedman personally "We would not have a trial for you at this time since the surgery was so long ago and the tumor is not growing If it ever does regrow please let us know"

Maybe it was just a polite "no" or maybe this possibility is truly open for us in case of a recurrence but the truth is that I have no idea how much a treatment like this could cost in one of the world's best institutions for cancer. Anybody has any idea about their fees?

- Ask the Brazilian doctor to come to Hungary and teach us to administer Perillyl Alcohol. I've read that the brave persons who tried to make it themselves found it unbearable to use.

Any and all help is very much appreciated. Thank you in advance and sorry for my grammar mistakes.

My father's GBM

 My father was diagnosed with GBM on 4/15 and he had a total resection surgery on 4/17.  I've been researching pretty much non-stop every since.  I watched the surviving terminal cancer movie, read Ben Williams book, have been scouring the internet gathering as much information as possible and this is how I ended up here.  

Here's all the information I have on my fathers tumor and the treatment and supplements he is on to date:

Genetic testing: MGMT was not detected (negative) unmethylated

IDH1 and IDH2 were not detected (negative) as well

It is EGFR amplified - which qualified him for ABT-414 clinical trial.

He is currently in the trial and has some symptoms which lead us to believe he is getting the actual drug and not the placebo.  

He finished up the standard treatment of Radiation and Chemotherapy a few weeks ago.

He is taking Keppra and a PPI daily

List of supplements: Cannabis oil, 20 mg melatonin, 800 mg curcubrain, reishi and coriolus mushroom supplement, 500 mg Boswellia extract, 400 mg green tea extract, 200 mg resveratrol, 200 mcg selenium, 10000 IU vitamin D3, Hemp seed and flax seed oil.

Also drinking fruit and veggie smoothies daily.

These are the off label drugs that I recently received and plan on having him start in a couple days.

Disulfiram-125 mg a day for the first week, then 250 mg daily

Chloroquine- 250 mg daily

Celebrex- 200 mg twice daily

Metformin- 500 mg once daily, titrating up to twice daily, then 3 times daily

Doxycycline 100 mg twice daily

Propranolol 60-80mg daily

Lipitor

DCA 5mg/kg per day, titrating up to 12-15mg/kg.

LDN (low dose naltrexone) start with 2mg nightly titrating up to 4.5mg

I have a few questions:

1.How does the dosing and schedule of the off label drugs look? Anything I should add or subtract? 

2. I know Disulfiram and DCA can cause neuropathy, should they not be taken together?

3. Should the green tea extract pills be avoided while on DCA?

4. The doxycycline I have is Dox T-SL (Doxycycline 100 mg / Lactic Acid 5 billion spores)  

It says "DOXT-SL contains Doxycycline along with 5 billion spores of lactobacillus sporogenes."

Would the lactic acid cause a problem?

5. Most of the research I've done says statins are beneficial, but I've also an article saying they should be avoided.  Should they be used or avoided? 

If he does take the Celebrex, any recommendations on dose?

6. The Naltrexone pills I have are 50 mg.  I've seen people dissolve them in 50mg of water and then use a syringe to suck up desired amount in mg.  Is this advisable?  Some people say this will cause inconsistent doses, but I don't know another way.

7. I've read that since his GBM is unmethylated and EGFR amplified that a metronomic chemo scheduling would be more beneficial than standard chemo treatment.  We meet with my fathers oncologist next week to take a scan and discuss the future game plan.  Does anyone have any recommendations on how to try and convince his dr. to prescribe the metronomic dosing schedule.

Any help or suggestions would be greatly appreciated.  Like I said, I've been doing a ton of research and sometimes it seems like the more I do, the more confused I get.  

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

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

Bottom Line: We implemented a cocktail:

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

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

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

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

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

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

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

He was also taking these supplements:

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

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

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

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

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

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

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

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

Thanks for any insights.

Oligoastrocytoma grade 3, progression, next steps?

Hello all and thank you for this great community!

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

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

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

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

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

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

br and thanks,
Juha

Low grade glioma suspected

Hello all,

I'm currently 40 weeks pregnant and about 20 weeks ago had a seizure, resulting in the discovery of a brain mass suspected to be a grade 2 Oligo. I'm working with Dr. Wen at Dana Farber and the plan is to recover from birth, then move forward with surgery, etc.

I'm wondering what advice you'd offer to someone in my situation? Diet, supplements, surgeons, etc?  What off label drugs and treatments should I consider to delay or prevent recurrence? I've read through Ben Williams publications and spoken, via email, with Ben and Rich Gerber. They provided their recommended drug and supplement lists.

I've read about the DCvax-l and see its promise. I'm British and recently learned the only place to likely get it is in London. So I've reached out to them but I'm not sure they're administering it for low grade glioma?

There are also a few clinical trials out of UCSF that I may be eligible for (IMA950, Poly-ICLC with or without Variliumab or Pulsated tumour lysate with Poly-ICLC). Can anyone tell me more about those? I've read Poly ICLC shows promise.

Thank you all for your time and advice.

Maria

Tom Wangerin - Cocktail Profile and Questions

Hi all,

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

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

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

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

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

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

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

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

Hoping for some advice in a selection of the following:

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

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

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

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

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

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

Current Plan:

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

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

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

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

Hypermutation Risks of Temodar

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

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

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

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

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

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

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

Thanks,
Bryan

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

Terminal brain cancer dx

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

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

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

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

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

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

Hope to hear from someone.

Post SOC Advice

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

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

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

PTEN FISH

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

My niece keep fighting with GBM. Last 3er January  did new MRI and we are waiting for the result but with the hope that the MRI were well (for some anticipated information)  ..

She has GBM no methilated and we think that temodar is not so effective in this cases. She had a second operation after first operation and treated with temodar. We read about Avastin that is very hopeful.

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

Do you think it’s a good option to join THC and CBD with Chloroquine and Celebrex?. I read about the moderate interactions between Chloroquine and Celebrex, but I didn’t read anything clear for me about THC/CBD and Chloroquine or Celebrex.

Please could you help us about your experiences? We would appreciate any  information. Thank you very much.

Sincerely, Jose Mª

JMRT

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

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

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

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

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

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

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

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

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

Sincerely,

Marlena

What else would you do?

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

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

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

Unmethylated treatment advice

Hi,
My beautiful husband had removal of GBM left parietal tumour last October.
Histopatholgy results:

The sections show multiple fragments of hyper cellular brain parenchyma, diffusely infiltrated by tumour composed of hyper chromatic and atypical glial cells, set in a fibrillary background.   The glial cells have a broad morphological spectrum which includes scattered epitheloid forms with abundant pink cytoplasm and smaller glial cells with a high nuclear to cytoplasmic ratio. Frequent mitotic figures are present including atypical forms. Multiple foei of palisading tumour necrosis and microvascular proliferation are seen.

ATRX: retained 

IDH1 (r13211) immunonegative

EGFR; strongly and diffusely positive

P53: positive in approximately 30% of the tumour cells

Ki67 prolification index: approximately 20%

Unmethylated 

Glioblastoma IDH-wild type grade 4 

After surgery we have commenced veliparib  + radiology.

We are now on a break and due to commence veliparib + temozolomide in about a week (6 month treatment:one week on tablets ; three weeks off)

Current supplements

Curcumin 

Silymarin 

PSK

Selenium 

Vitamin D

Multivitamin 

+ Ketogenic diet 

Because we live regionally (in Australia), we are now assigned a local oncologist (not neuro-oncologist).  This VERTU trial is the only offered treatment.  The oncologist is reluctant to discuss other options/supplements.

The registered nurse overseeing the trial said that if I approached the doctor and asked to add a medication they would consider it, so we have an appointment next week that I have an opportunity to put a case forward for other treatment, hence I am asking for advice.

Question: should we be pushing for Keppra?  

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

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

Question: Do you have any other recommendations for supplements?

Thank you in advance for any assistance.

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

Dear all,
my 17-year old son will finish RT and temodar on December 28th and we are planning to go to Van Gool's clinic in mid January for the dendric vaccine. In the meantime, I would appreciate advice on supplements for him to take in the meantime. Currently the only one he can tolerate is melatonin, but my hope is that he can do much more once he is off temodar and radiation.  If you could include the dosage that would be great! He is about 140 lb. ( 63 kg.)
Thanks!!!!!

Dear All,

I kindly ask for advices regarding Vitamins/Meds I could give my dad. I am new to all of this, doing my best by reading studies and this blog. My dad had surgery on August 3rd, diagnosed on August 18th. We live in São Paulo-Brazil and there are no clinical trials here and a bunch of other stuff available in the US/Europe. Which makes my situation a little harder but we plan to travel for vacation to the US in January so maybe then I can buy some meds/vits. His tumor is on the right frontal lobe. He's doing great, no side effects, no after effects whatsoever. Still working, going to the gym, golfing and playing tennis. He's 1,75m and 87kg.

So long story short:
He had pulmonary embolism after surgery which postponed the beginning of his cancer treatment
IMRT began on October 3rd with Temodar.
Temodar 42 days-cycle ended on November 13th - 145mg/daily
IMRT ended on November 17th - total of 6000cGy (there were a few holidays in-between)

Currently he is on a pause from his cancer treatment, MRI scheduled for this Friday (high hopes everything is fine!). His onco explained us last week that from now on he is going to be on a 5 days on / 23 days off of Temodar cycle for the next six months, starting on December 17th.
First cycle with 300mg, from second cycle on 400mg.

Although I know this is the standard protocol, I feel like there are more stuff I can do for him.

His current meds/vits are:
Phenytoin 100mg 3x/day - he started having seizures, that's how we found out
Carbamazepine 200mg 2x/day - same reason as above
Rivaroxaban 20mg 1x/day - for the pulmonary embolism
Dexamethasone 4mg half pill 1x/day - for edema
Vitamin C 1mg 1x/day  - got the idea from here, approved by the doc
Vitamin D 2000IU 1x/day - got the idea from here, approved by the doc
Green tea whenever he wants to drink it which is like, 2x/week - got the idea from here, approved by the doc

Once he starts the next chemo cycle, onco told him to take Trimethoprim/sulfamethoxazole 3x/week also for six months.

Biopsy report: 
AE1/AE3 - negative
EMA - negative
GFAP - positive
Ki67 - 50% positive
Neurofilament - negative
Protein S100 - positive
ARTX - nucelar reaction preserved
IDH1 - negative
Mutations p.Arg132Cys / p.Arg132Gly / p.Arg132His / p.Arg132Leu / p.Arg132Ser in the 132 gene codon IDH1 were not found
P53 - plurifocal reactivity (2+/4+)
EGFR1 - positive, score 220/300
MGMT - negative (unmethylated)


Is there anything I can give him to make him better? Am I missing something? What else could I do for him?
I accept every advice and suggestion, I'm kinda lost and blind here but always hoping for the best.

Today is his 61st Birthday.
Happy birthday dad! We love you so much!

Thank you for being the best support system anyone could've asked for!
My heart goes out to every and each of you!

Considering treatment options for high grade diffuse midline glioma H3k27m for my 8 year old daughter

Hi all,

Thanks so much to Stephen for your in depth reply to my questions about my 8 year old daughter and invitation to this blog. We moved to Norway in July and my daughter was diagnosed in early September with high grade diffuse midline glioma with H3K27m mutation after an extended biopsy, where it was determined that the tumor was not resectable. She underwent 3 further operations to have a double valve shunt put in to relieve hydrocephalus symptoms. She finished 6 weeks of radiation and Temodal about 10 days ago. The doctors want to start her on Temodal/Lomostine 4 weeks after radiation finished. If we follow this path, we could also have a full molecular analysis done and, upon recurrence, may possibly be able to access a trial using afatinib for BI1200.120, if applicable, or another targeted agent. I would also push for using repurposed drugs in the cocktail approach if possible and our conservative doctors could be convinced. 

We are trying to explore other options, and thanks to Stephen, learned about a new phase I peptide vaccine trial opening for paediatric glioma patients with mutation H3.3K27m based in San Fransisco. It is for patients who have completed 6 weeks of radiation and have not yet started chemo again, which is exactly where we are now. https://clinicaltrials.gov/ct2/show/NCT02960230

I am finding it so difficult to determine what would be the most promising, preferably least toxic option for my daughter. Any input on how promising a peptide vaccine targeted to this kind of mutation could be? Compared with temodar/lomostine/cocktail approach?

Many thanks in advance for your input.

Jeni

Looking for a free-thinking Neuro Oncologist in the UK for a second opinion. Any suggestions?

Hi there

Can anyone recommend a good private (or even better NHS) neuro-oncologist or oncologist in the UK who is willing to think outside the box and support the cocktail approach? If I find the right person I might transfer my treatment over to them, so ideally they would be Leeds-based. My current oncologist in Leeds (where I live) is unfortunately not very helpful and doesn't support the cocktail approach at all. I want to try thyroid hormone T4 suppression with methimazole and cytomel (synthetic T3 hormone) alongside radiotherapy (although it is probably too late for that now, as I resume this afternoon) and other treatments. 

As a bit of background I am a 29 year old male, first diagnosed in June 2015 with a grade 2 diffuse astrocytoma. I was encouraged to do a year of Temzolomide chemotherapy to shrink the tumour and then hopefully they could operate. However since August of this year a scan indicated that the tumour had changed and become more aggressive. They recommended radiotherapy but during this the tumour became more aggressive and I was getting terrible headaches and vomiting. They ordered an emergency MRI scan to see what was happening and I was told that I needed emergency surgery to relieve pressure and try and debulk the tumour. A biopsy following surgery showed that my tumour has become a grade 4 Glioblastoma Multiforme. My current plan is to finish off the last ten days of the radiotherapy beginning today, and will then pursue some kind of chemo - either more Temozolomide or PCV. I want a second opinion because more Temozolomide doesn't seem to be an approach supported by the evidence. 

Any suggestions gratefully received!

Many thanks

Liam Raftery

My 38 yo husband was diagnosed with GBM IV. He started with headache and after 12 hours he was paralysed on his left side. The tumor was in his right frontal lobe almost 5cm diameter. They have resected the main mass but it has infiltrated his coropus callosum on area of 1cm, which they say is unoperable. His tumor is IDH-1 wild type and methylated. Next week he is starting his chemo and radioteraphy. I am trying to educate myself between hospitals, work, child but it is too much for one person to handle. Doctors are refusing to use coctail aproach so here I am on my own on this path. I am so grateful to find this site and truly admire all of you for work and support.
This is what we have got so far but I will truly appreciate every tip or insight.
What is crucial at this point?
I am putting him on ketogenic diet.
He is taking
Metformin 500mg twice a day
Dekapote 500mg twice a day
Celebrex 200mg twice a day
Curcumin Longevida 2 capsules a day
Boswelia serrata 600 mg twice
Pterostilbene twice
alfa lipolic Acid once
Green tea extract twice
Broccoli sprout extract once
Reishi 1 caps Coriolus 3g Maitake 3g once
Melatonin 10mg once
Cannabis oil cbd
We have got chloroquine and disulfiram are they necessary now?
As for channel pomp inhibitors I was reading about them but still don't know if you are going for all them during chemo -like telmisartan, nexium, verapamil?
I am waiting for Cymetidine Tagamet - you are using it also during his radiochemotherapy? It is interacting with almost all drugs but I suppose I have nothing else antymigrating in his coctail.
I am a little confused with Keppra and risk of demethylation - if he is methylated is it necessary? If so when it is best to incorporate this?
What else should /could I do? Thank you and wish you all the best !