Second recurrence-- what next?

Hi all,

My husband is being treated for his second GBM relapse. He's receiving irinotecan and Avastin at the moment and his last two MRIs have been stable, interpreted as radiation necrosis. The tumor size hasn't changed at all (close to 4cm in diameter) and he's experiencing neuropathy on his right side, speech difficulties and major brain fog on some days, but overall doing okay. In fact, he has improved significantly since July, when he could barely form sentences, was losing function of his right side and was very sensitive to noise and light. Now he's going on daily walks, can spend time around our rambunctious kids, and his speech is much better-- we are feeling very grateful.

I'm considering adding to his cocktail but I'm not sure what to add and what we should prioritize when talking to his doctor. Here's what I'm considering, I'd be open to any suggestions beyond this as well. His tumor is MGMT-methylated and IDH1-mutant.

-Chloroquine-- Is this something we would have to source on our own? And if so, is it still not available in the U.S.? Has anyone purchased from the vendor in Canada?

-Mebendazole-- What is the recommended dosage for this? Is it potentially more effective than chloroquine?

-PARP inhibitor-- Is there off-label use approved with olaparib in the U.S.? And can this be used with his current treatment?

-Disulfiram- Is this potentially a bad idea if he's already experiencing neuropathy?

-Sodium phenylbutrate-- I haven't read too much about this one other than a couple of successful case reports. I'm assuming this is something we'd have to get his doctor to prescribe but I'm not sure if it's worth pursuing.

-Sativex (or similar)- Where is this available? And what is the recommended dosage?

I think I'm most interested in introducing mebendazole, disulfiram, Sativex and a PARP inhibitor, if possible. Interested to hear others' experiences with any of these.This blog/community is an excellent resource-- thank you in advance!

Abby

Thoughts on ALA and Hydroxycitrate

Hi all,
I haven't posted before and am fairly new to the blog. I've been visiting it frequently over the past few weeks and I really appreciate all of the shared knowledge, opinions and helpful advice that I see here.

I am wondering if anyone has tried the alpha-lipoic acid/hydroxycitrate combination in addition to CCNU. My husband is 31 and is about to begin his second round of chemo, this time trying CCNU. He was diagnosed last April and went through the standard TMZ/radiation but had a recurrence in January. He had his second surgery in February and they were able to do a complete resection this time.

I've been reading a lot about alpha-lipoic acid and hydroxycitrate, also in combination with naltrexone, and I think it's something we want to try. I'm wondering if there are certain supplements or medications he shouldn't take at the same time... also curious what the recommended doses would be. Some of the studies I've read show that the ala was administered via IV which I don't think will be possible for us, especially because I expect his oncologist to be really hesitant about this treatment plan.

Also, is it possible to combine this type of treatment with CCNU and another drug like tamoxifen or Keytruda? So many options and I'm not sure which is the best to make a case for to his doctor.

He takes a number of supplements, including turmeric, garlic, goldenseal, resveratrol, boswellia, and vitamin D. He's also on metformin, a dose of 500mg twice a day. He's been on the ketogenic diet for almost a year.

I appreciate any insight.
Thanks!

Abby

*Edit: I should also mention that we are still waiting on the more extensive genetic testing results. His first pathology last year showed MGMT methylation-positive, IDH1 positive. ip19q negative.

Treatment options post-RT/TMZ phase for IDH1 mutated, MGMT unmethylated GBM

Hi all,

I was diagnosed in late September with a GBM (frontal, left, with large cyst, IDH1 mutated, MGMT unmethylated), which was subsequently successfully operated (gross total resection) at the end of September. I guess as many/most here, I eventually stumbled across Ben William's book, the Glioblastoma Treatment options guide and ultimately this invaluable blog and community, which I have been studying and following closely since. I recently concluded the first phase of my treatment, following standard Stupp Protocol (6 weeks concomitant RT/TMZ) and am currently planning next steps (plus waiting for first post-RT MRI next week...).

While I did not get 'smart' in time to save my tumor material from being paraffined post-OP (unbelievably, this is still standard practice here in Germany in most hospitals), I did actively supplement my first phase of treatment with what I think is a reasonably aggressive 'cocktail' approach, including the following components:

--------------------------------------------------------------------------------------

Meds:
- Chloroquine, 1x 250mg
- Celebrex, 2x 200mg
- Disulfiram, 1x 250mg - 500mg (+4mg copper)
- Sativex (THC/CBD spray), ca. 3-4 sprays (approx. 15-20mg)

In general, I tolerated these medications without any major problems or side effects, with a few exceptions. Notably, towards the end of the treatment I developed some peripheral neuropathy in my left foot, which has now almost recovered, however (took around 3-4 weeks to recover). Nevertheless, it cause me to cease the Chloroquine and Disulfiram shortly before the end of my RT treatment phase. In addition, I found it a little hard to tolerate Sativex as I wasn't too keen on the psychoactive effect, which gave me some anxiety / mild panic attacks from time to time at night. As a result, I took it only for around 3 weeks or so.

Supplements:
- Berberine: 1000mg
- Boswellia Serrata: up to 4400mg (gradually increased dosage over course of RT to protect from Edema)
- CBD oil (8%), 5 drops (started after ceasing to take Sativex)
- PSP, 2100mg
- Curcumin (Longvida), 2000mg, increased to 3000mg towards end of treatment
- Green Tea Extract, 3625mg
- Lycopene, 20mg
- Matiake D-Fraction Pro, 65mg (3x 23 drops)
- Melatonin, 20mg
- Omega 3 DHA/EPA, 3528mg
- Probiotics, ca. 40bn units
- Pterstilbene, 250mg
- Resveratrol, 500mg
- Selenium, 200ug
- Silymarin, 1500mg
- Soy extract, 3750mg
- Vitamin D, 9000IU

In general, all of the above were well tolerated without side effects. I'd also like to mention I was able to avoid any kind of Edema / Cortisone use during my RT therapy, which I believe may have been at least in part facilitated by Boswellia in combination with Celebrex.


Other:
- Ketogenic diet, max 40 g Carbs per day; generally constant medium to high Ketone bodies when measuring. Started 1 week before RT, and continued to last day
- Caloric restriction, lost ca. 8 kilos in 6.5 weeks of RT, which I think equates approx. 600kcal or so in daily caloric restriction
- Daily morning smoothie, with variety of hopefully beneficial things like berries, broccoli sprouts, spirulina, tumeric powder, Matcha green tea, cocoa powder,  etc.
- Daily walks of ca. 1 hour to combat radiotherapy fatigue and keep fit

Ketogenic diet was somewhat difficult to maintain psychologically, but possible due to my partner's kind help in continuously seeking out new and often tasty dishes to keep things interesting. Caloric restriction much easier, since Temodal anyway caused me lack of appetite. I believe daily walks were very helpful to avoid RT fatigue, which affected me only in very minor way and much less than I expected.

--------------------------------------------------------------

NEXT STEPS & QUESTIONS

I am currently considering next steps, and having talked to various NOs and other Brain Tumor specialists, I am still not entirely convinced what the right way forward is. As expected, most doctors do not want to deviate from the Stupp Protocol (i.e. follow up the RT/TMZ phase with 6 months of 5/23 TMZ cycles). However, I am not convinced such a treatment would necessarily add much benefit in my case, since my tumor is MGMT unmethylated.

One of the leading specialists in Germany told me that the unmethylated MGMT status is irrelevant in the case of IDH1 mutated tumors like mine, since a study (NOA-4) showed that there was no significant difference in responsiveness  between MGMT methylated or unmethylated IDH1 tumors.

https://www.ncbi.nlm.nih.gov/pubmed/19901110

However, upon further research I stumbled across the following interesting study from China, which seems to suggest that IDH1 mutated tumors might in fact be particularly resistant to TMZ (3-10x more resistant in cell culture test). The study also notes that in China they observed relatively little additional benefit of TMZ cycles for the IDH1 mutated group of patients compared to RT alone, and the authors argue that survival benefits for IDH1 mutated tumors may simply be the result of a less invasive / more benign type of tumor relative to wildtype. It makes me wonder if the fact that MGMT doesn't seemingly play as big a role for IDH1 mutated tumors is simply the result of the fact that neither responds well to TMZ...:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4747376/

I'm therefore a bit hesitant to simply go ahead with TMZ therapy hoping for the best, and would like to consider other options.
One approach I am considering is Immunotherapy at the IOZK clinic in Cologne, which is not far from my house. However, because I don't have frozen tumor material, they would have to make a personalized vaccine using a liquid biopsy approach. This, in turn, could make the treatment even more unproven than vaccines anyway are even when made from tumor lysate. An additional option which could possible materialize down the road (but not yet, as no trials are running here presently to my knowledge) is to try to get hold of an IDH1 vaccine on a compassionate use basis.


My immediate next step is to see the MRI results next week, but I'd be very grateful for any advice on how to proceed from here. Especially, I'd like to try and resolve the following questions:

1. Would it be unwise to not do any additional TMZ cycles? Are there any obvious chemotherapy alternatives perhaps?

2. Would the immunotherapy using liquid biopsy at IOZK clinic be a good alternative for ongoing chemotherapy cycles? Would it be advisable to start this right away (i.e. without any additional TMZ cycles), or should I do some TMZ cycles first just to hedge my bets?

3. Any other recommendations in terms of maintenance strategies. E.g. what medication(s) could make a good maintenance therapy, without concurrent chemotherapy?


Thanks in advance for any comments, and wish you all a very happy and most importantly healthy 2018!

Best,
John

T4 Suppression

Because T4 suppression therapy looks promising for GBM’s and other cancers based on a small observational study, I thought I would post my sons response to this treatment over time.  The study can be found in Stevens Brain Tumor Library, Therapies - human Studies. 

For those not familiar with my sons story, here it is.  Originally diagnosed with a large Oligo 2 in 2007.  It was located in the left parietal region.  Received radiation and TMZ.  There was no evidence of tumor until October 2014 when a GBM was diagnosed after personality changes.  This was treated with TMZ, radiation and Optune.  In Feb 2016 he experienced his first recurrence, three areas in the occipital lobe.  Treated with SRS and TMZ and was started on Nivo.  All 3 areas resolved within two months.  Then in June an area of enhancement showed up in the pons and one month later a recurrence in the occipital lobe and in the area of the 2007 resection cavity.  TMZ and Optune were discontinued.  The small enhancing area in the resection cavity was treated with SRS in an attempt to enhance the possibility of an immune response in conjunction with Nivo.  CCNU and Avastin were recommended.  Concerns over Avastin are the increased migration and invasive nature of GBM’s once exposed to it.  CCNU is myelosuppressive and we are trying to obtain an immune response from Nivo so we are not too excited about that. 

Which brings us to the T4 suppression therapy.  This was started yesterday.  We will see if a response occurs and if not, or if neurologic symptoms become worse, we will continue T4 suppression and add CCNU and Avastin.  The BELOB trial showed a relatively small benefit with CCNU and Avastin, with the exception of IDH-1 mutated tumors where the response was significant.  My son’s tumor is IDH-1 mutated.  At least the original GBM was, and I am told recurrent tumors maintain that mutation.  So maybe CCNU and Avastin will prove significantly beneficial.  For now, we are holding on the CCNU and Avastin.  That could change quickly.

Jeremy has been on a repurposed drug and supplement cocktail throughout his GBM treatment.  Both NO’s he sees have been supportive of the cocktail approach because they believe he is responding better than the typical IDH-1 mutated GBM patient.

I will keep you up to date.  If the T4 suppression approach is effective, it might be worth looking into as an additional treatment for those in our group.  I have contacted Dr. Hercbergs, the primary investigator in the Observational study on T4 suppression.  He provided me with additional information and target FT4 levels if anyone needs this information.

Effect of Disulfiram Administration on Rat Brain Glutathione Metabolism

http://www.ncbi.nlm.nih.gov/pubmed/8142069

This study is not about brain tumors, but it does show that oral administration of disulfiram to rats (12 mg/kg), which would convert to about 125 mg for an average adult using allometric scaling, is sufficient to decrease the brain levels of reduced glutathione (GSH), increase the levels of oxidized glutathione (GSSG), and thereby decrease the ratio of reduced to oxidized glutathione from 122:1 to 12.8:1.

I propose that this could be a particularly effective therapy in IDH1-mutant tumors, which already have lowered baseline levels of NADPH, reduced glutathione (GSH) and impaired antioxidant capacity.

I will add this study to the Library.

A typical anti-alcohol abuse dose for disulfiram is 250 mg daily (500 mg has also been used).  Watch out for peripheral neuropathy (pain, tingling, numbness in fingers, toes, etc.).

What drugs/supplements are important to take during radiation?

After going to Dana Farber and Memorial Sloan Kettering we decided to go with radiation (for the second time) and continue on TMZ. We did have an apto with CTCA but will be canceling that. Here is a little background as this might help others in similar situation.
Husband at age 28 was diagnosed 5 years ago with oligoastrocytoma grade III debatable to be grade IV (left frontal lobe). MGMT status, IDH 1 mutation, some amplification of EGFR but NOT the V3 mutation, and loss of 19q but NOT 1p (more astrocytoma behavior). Had part of left frontal lobe resected, did radiation w/ low daily dose of TMZ, had a month off from treatment then took TMZ 5/23 schedule for 1 year. Tumor went into remission. 4.5 years later (July/15) MRI revealed aggressive tumor growth going from left frontal lobe to right frontal lobe (it looked huge to me). I was desperate and started researching online, found out about Ben Williams and Cheryl Broyles, which led me to this blog eventually. The only option was trying to get into a clinical trial or do Avastin (at that tie we did not have the genetic testing done). Once we found out the MGMT status we just went for the solo treatment of TMZ 5/23 as my husband was declining (sleeping most of the day, forgetting what we did on that day, having more headaches). I started him on many supplements and a few drugs as they are hard to obtain (I'm listing his cocktail below). I also want to mention that we have been praying a lot and asking God for guidance, which in some cases he answered my questions just like I asked. My husband started TMZ in august and had MRI every two months which showed amazing results each time. If I have to picture the results, it's like being an orange transformed into average size strawberry (sorry I do not know the measurements). Then january's MRI revealed a new tumor growth (like a small grape) on the right side behind the old tumor. The old tumor still showed decrease in size. His TMZ cycle was placed on hold which scares me, but they said we needed to figure out what we wanted first. There are no spots for him for clinical trials right now according to Dana Farber, Memorial Sloan Kettering and Duke. One place said they can do radio-fraction radiation to the whole area (not just the new tumor) for 10-15 days and continue on low dose TMZ, BCNU, CCNU or PCV. They prefer to radiate the whole area because it's been almost 5 years since last radiation. Another place said that radiating the whole area could cause more harm then good, so they prefer radiating the new tumor only with TMZ low daily dose as this can act as a sensitizer to radiation and it has continued to work with the other tumor. Very confusing specially when we don't know anything about that, so I'm hoping that they choose whats best according to their expertise. I did ask about off label meds and of course no one is in favor of that telling me that there is no evidence or studies done in human, etc. They did mention the immune therapy drug but told me insurances may not approve the drug because it's extremely expensive. One of the NO was ok with taking all of the supplements but did tell me NOT to have him take any antioxidants during radiation because it can work against radiation and in favor of the cancer cells.
So what do you all know about antioxidants during radiation?? Has anyone taken any supplements during the radiation? I don't want to give my husband things that can potentially interfere or work against the treatment. I want to do whatever may help his radiation and TMZ work better. I might not be able to get some or any drugs that are helpful but I have to try it!

Can anyone tell me what drugs/supplements to take during radiation and TMZ and what drugs/supplements NOT to take it?? I'm trying to put together a cocktail approach for this new treatment approach. I'm forever grateful for any info/help anyone can provide. I know that for some doctors our loved ones are just a number, another unlucky patient, but for me my husband and my two children are all I got here and I just have do everything in my power to keep him with us longer. I know that God is in control of everything but we have to our part too. The night before his MRI I actually dreamed exactly what happened, we were in the office with the doctor and she pulled the images and told us that the MRI showed a new tumor. Everything happened the same way, even how she told us. I woke up at 4:20am , got on my knees and prayed. Told my husband that I was concerned about his MRI and told him about my dream before we left the house. I feel that God was warning me, to prepare myself so I wouldn't get desperate. And it worked! I was disappointed but I felt that maybe we can beat this too.

Sorry for the long post and thank you in advance for your input. Below is my husband's cocktail approach while he was on TMZ solo.

 Vit D 5000 u once daily

Genistein 125mg every other day
Milk Thistle 250mg twice daily,   now on 750mg daily
Fish oil 5000mg divided in 2 doses daily
Lycopene 20mg daily
Green tea Extract 750mg twice daily
 Trans Resveratrol 250mg twice 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 from mushroom science
Melatonin 20mg nightly

TMZ 450mg 5 days on/ 23 days off
Keppra 500mg twice daily for seizure (had 2 in the past)
Metformin ER 1000mg daily as off label 
Omeprazole 20 mg daily (40mg twice daily 3 days before TMZ until 2 days after) as off label
Simvastatin 20mg daily as off label, but his cholesterol was high when we checked
Celebrex 200mg daily  as off label (was not faithful to this one because of his drops in PLT) taking it daily now while he is off chemo and plan on keeping it that way.

What am I missing that is very important?? I know I need to get CBD/THC but that's illegal here so not sure how to get it.

Gbm from egypt Update

Dear all..
I am Sarah wife of Ahmad
I am not a very good follower of this blog as I used to be with the old one as I dnt get email notifications as I did..I know I's a simple issue so pls I give me a tip for that..

I posted Ahmad's cocktail earlier
He is on ccnu we are going to take our fourth round in 10 days..

With the ccnu he is taking:
Tamoxifen
clorocquine
Ppis
Accutane
Verapamil on chemo days

A cocktail so much like what Ben did..
Together with all the common supplements
Every one here is probably taking..
Our state:
We do struggle with our seizures..Ahmad is taking now 3000mg keppra divided twice daily and 1800 mg trileptal also divided..
I can not say that his seizures are fully controlled..a week ago he missed a dose and got 7 seizures in one night..
Right now he can get a really minor seizure just before the time of his medicine sometimes..I hope it gets better..and I have no idea why his seizures are that persistant..

His last MRI showed that the "spot" I sent u about earlier is not growing which is good news but still close monitoring is needed ..

There is also some short term memory problems and sometime problems in the ability of expression But not noticed..

Approaching our 4th round now and he began to feel very weak..he is nauseated all the time and always wants to sleep..this didn't happen before especially that we are away from ccnu last dose..is this normal??
If anyone have similar experience pls share..he can not take his cocktail when he is that weak..and nauseated and almost doesn't eat..

Ahmad is also on ketogenic diet..he was doing fine but now with the weakness and nausea I am thinking maybe he stops this diet and follow a less restricted one..and probably add 1500 mg metformin..what do you think?? Can he begin taking metformin while he is still on ketogenic diet??

Thank you all and I really hope you are all okay
Sarah

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

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.

Help on Accutane/PCV interaction

Hi All,
This is my first post so far, thanks to all for the knowledge shared especially to Stephen for the time he spends on this.

My wife was diagnosed 2 months ago with a GBM (mutated IDH1 / no MGNT) , It evolved from 2 full resection (201203-AAG3 / 201504-AAG3). Due to the internal capsule in compromised, there is a high risk of hemiplegia, so NO decided to apply PCV protocol in order to produce some regression that may help the work of the NS in a future surgery, decreasing the chance of collateral damage. Her tumour growth was fast in the last 3 months, but after the first PCV it has been stabilized. At that time we found Ben Williams story, Astrocytoma Options web, so we decided to follow cocktail aproach to create sinergy. She is now in the 2nd PCV cycle and we added Tamoxifen, Verapamil, Celebrex, Metformin and a bunch of suplements like Curcumine, Boswellia, Resveratrol, Fish Oil and a couple more. So now we want to add Accutane but we want to be aware of any possible interactions with PCV and avoid them.

PCV Protocol:

• Day 1 - Lomustine.
• Day 8 till 21 Procarbazine.
• Day 8 and 29 Vincristine.
• 2 weeks off.

Any advice on when she should take Accutane?

Thanks in advance.
Francisco.

Ben Williams - cocktail profile

Ben Williams' treatment summary as it appears on astrocytomaoptions.com.

Ben's tumor was recently determined to be positive for the IDH1 mutation, and positive for MGMT promoter methylation.


  

Information compiled from Ben’s book Surviving Terminal Cancer, and from the summary of his story at virtualtrials.com.


• March 31, 1995. At the age of 50, Ben underwent a subtotal resection of a large (180 cubic centimetre) glioma of the right parietal cortex, and was given an initial diagnosis of anaplastic astrocytoma, which was later upgraded to glioblastoma after a more thorough inspection of the resected tumour tissue. Extensive residual tumour remained post-surgery.
• Radiation therapy consisted of the standard 55-60 Gy to the tumour area plus 2 cm beyond the tumour boundary.
• The first MRI post-radiation showed neither shrinkage nor growth of the tumour.
• June 1995. Two weeks prior to his first round of chemotherapy Ben began taking oral high-dose tamoxifen at a dose of 220mg daily. Tamoxifen treatment was continued until March 1998. Side effects of tamoxifen included blood clots which he treated with Aspirin and long walks.
• July 1995. First round of intravenous BCNU (carmustine) chemotherapy combined with 600mg per day of verapamil taken during the week surrounding BCNU chemo. The verapamil was intended to block the drug extrusion pump mechanism at the blood-brain barrier, and therefore increase the penetration of BCNU past this barrier.
• The first post-chemotherapy MRI showed a moderate degree of tumour shrinkage.
• Between the first and second round of chemotherapy, Ben began taking oral Accutane (13-cis retinoic acid) at a dose of 160 mg per day on a two week on/ one week off schedule (he later reduced the dose to 120 mg per day). Accutane was not taken on the days of chemotherapy. Accutane treatment continued until December 1995.
• Also around this time he added melatonin at 15mg per evening and the immune-boosting mushroom supplement polysaccharide Krestin (PSK) at a dose of 3 grams per day. He continues taking 10mg of melatonin to this day (2014).
• August 1995. Second chemotherapy cycle, this time consisting of oral procarbazine, oral lomustine (CCNU) and intravenous vincristine. This regimen is known as PCV. Verapamil was again taken to improve the brain uptake of the chemotherapy during the week surrounding oral lomustine treatment.
• Second post-chemotherapy MRI showed an “enormous” reduction in the residual tumour.
• Third chemotherapy cycle, PCV.
• Added oral gamma linolenic acid (GLA) at a dose of 2-2.5 gram GLA daily, consisting of 10 capsules of borage seed oil.
• Late November. Third post-chemotherapy MRI again showed substantial shrinkage of the residual tumour.
• Early December. Fourth cycle of chemotherapy consisting of BCNU. Ben decided to switch back to BCNU due to stomach pain caused by procarbazine and neuropathy caused by vincristine.
• January 1996. Fourth post-chemotherapy MRI. No evidence of residual tumour, first “clean” MRI.
• Fifth cycle of chemotherapy again consisted of BCNU, followed by another clean MRI.
• The sixth and last cycle of chemotherapy consisted of PCV with a half-dose of vincristine to increase its tolerability. This was again followed by another clean MRI.
• Many clean MRIs followed, though Ben continued daily high-dose tamoxifen treatment until March 1998.

Ahmad story and cocktail

Dear all, i am sarah wife of Ahmad 34 years old, Egyptian, diagnosed with gbm last october (secondary tumor, his first was anaplastuc astrocytoma grade 3 in 2008 removed abd treated with radiation only)

When we had our gbm in october the surgery was performed in UK..the onchologist recommended starting with temodar directly as he was concerned with re-irradiation..Ahmad took 6 cycles then he had another recurrence same place.. I was aware of Ben williams' story and did a little research..wanted to introduce cocktail with the temodal..but the Egyptian Onchologist here didnt encourage this at all..so i went with his advice..

After the recurrence and surgery success Ahmad is currently having a radiation treatment, reduced dose 40Gy 20 sessions and we started a cocktail that i want to share:

Melatonine: 10mg, night
celelebrex: 200mg ×3 times a day
vitamine D3: 2mcg morning
cloroquine phosphate: 250mg morning
milk thistle: 380mg× 2times a day
boswellia: 600mg × 7 pills divided through the day with meals
omega 3 : 1g ×3 times a day

Also there is Proton Pump inhibitors:
We started with omeprazole 3days a week high dose (40mg×4) then 3 days regular dose (40mg×2) and the 7th day is off..this protocol was advised by Anders (i hope i got it right from him) based on research of a professor:Stefano Fais,

and shoud be rotating each month a different PPI: omeprazole, lansoprasole and esomeprasole

The boswellia dosage is quite high as Ahmad didnt want to take any steroids during radiation..he just took one shot at the first day i dnt renember the name of the steroid nor the dosage (but it is the one commonly used) ..then after 2 weeks of radiation he experienced 2 seizures so we went to the neurologist who adjusted the keppra and trileptal dosages slightly and gave him another single shot of steroids..(but also do not remember the name)

Anyways he is fine now..abd we are almost ending our third week of radiation..there is still one to go..

i didnt add any supplements to the cocktail during radiation i fear there might be a contradiction of the supplements with it..

No side effects till now..the melatonin made him sleepy at first but niw he is used to it abd we r planning to raise the dose to 20 mg.. we are also going to increase the milk thistle dose

After radiation i think we will wait 3 weeks then start the chemo cocktail wich will be mainly CCNU and tamoxifen like Ben did..but i still cant get the CCNU..as it is not available in Egypt..

We also started a ketogenic diet..and we bought DCA..but still did not use it as we r concerened with the interaction with caffein..

will post the chemo cocktail when we start it

Sarah