Glioblastoma...Our Cocktail & Story

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Glioblastoma...Our Cocktail & Story

by tomformum on Mon Nov 11, 2013 08:35 PM

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So, back in August 2013, my mum was diagnosed with the dreaded GBM. I've since read Ben Williams book and my mum's decided to give it everything's she's got. We've started a ketogenic diet, have her taking all the recommended supplements and we're looking at getting our hands on the extra drugs our oncologist won't want to give us.

I do have some questions, if anybody has tried Ben Williams' cocktail method, so I'd truly appreciate any help.

August 18th 2013
Mum had a facial seizure. We took her into the emergency room and a day or two later, we learned she had a brain tumour.

August 27th 2013
We had an appointment with our brain surgeon in Southampton (UK). Sadly in the days leading up to the appointment Mum deteriorated, with her speech becoming slurred and her general body movement slowing. On the morning of the appointment, Mum had a stronger seizure and lost consciousness. We rushed her to the emergency room to find the tumour had grown since the last scan a week previously. She was taken to Southampton Spire Hospital by ambulance that day, and our surgeon operated the next morning.

August 28th 2013
The operation took place and the surgeons reported that the entire tumour had been removed. A few days later, we were told it had been confirmed as a case of GBM.  Initially, the entire left side of her body (the tumour was on the right side) wasn’t responding, with little or no feeling or movement at all. Mum went on to make an incredible recovery and after a period of around 7-10 days she was almost back to normal.

September 23rd 2013
Mum started a two week course of radiation. We were told she would have a higher than normal dose 3x per week (Mon/Wed/Fri) for two weeks. This is because we live on an island across the water from Southampton and ferry travel makes things inconvenient. The Dr told us he’d rather us do two weeks at a higher dose than 5 visits per week over 6 weeks.

October 4th 2013
On the day of what would have been her last radiotherapy treatment, Mum suffered a minor facial seizure which came with a strange yo-yoing of her blood pressure. She ended up very ill in the intensive care ward for 3 days. After a CT scan and several tests, the doctors had no idea what caused it. There was no swelling on the brain and no return of the tumour, so it remains a mystery. They’ve suggested everything from stress to an ‘echo’ from the radiotherapy as possible causes. After recovering, Mum completed her course of radiotherapy a few days later.

November 4th 2013
Mum had an MRI scan as a pre-chemo checkup. The doctor told us everything looks as it should at this stage and there’s certainly “nothing scary” about the images. We were a little alarmed to see a tiny blip on the scan, which the dr believes is a remnant of the original tumour and not new growth. Compared to the original MRI before the operation, these images look amazing. The first scans we had showed a huge midline shift and awful swelling, whereas with the latest scan the shift is gone and the swelling looks minimal if present at all.

November 8th 2013
Mum has begun a course of Temezolomide using the standard 5 day schedule.

After the surgery, a test was performed on the tumour sample, which indicated that the MGMT gene was ‘moderately active’ but they concluded that her tumour would have “some level of response to Temezolomide.”

As expected, after reading Ben's book and the accompanying 2013 Treatment Options PDF, a meeting with our oncologist  didn’t prove positive with any of the suggested treatments. They’ve basically said they want to keep mum “as well as we possibly can, for as long as we possibly can.” Any questions about supplements or melatonin etc were greeted with a condescending smile and a flat statement that nothing has been proven. Basically telling us that she has a year left from her diagnosis in August and there’s nothing else we can do.

The good news is, mum is extremely strong and determined to do everything in her power to beat this thing, or at the very least buy more time. We’re under no illusions of there being any kind of miracle cure and we know the dim odds we’re looking at here. Ultimately, mum refuses to take this lying down and if there’s anything we can do that gives any boost to her chances, she wants to do it.


At this point, you’d never know she had a problem. She’s cheerful, strong willed and shows zero ill effects. Apart from the occasional emotional episode, she’s truly doing well. She’s surrounded by family willing to support and help any way we can, my job being the researcher.

Mum’s current drug regimen prescribed by our doctor includes:

Dexamethasone 4mg per day
Lamotrigine 50mg per day
Levetiracetam 1000mg per day
Omeprazole 40mg per day

After reading Ben's book, we have mum taking the following supplements:

Curcumin - 3600mg per day
Milk Thistle - 900mg per day
Lycopene - 10mg per day
Flax Seed Oil - 2000mg per day
Resveratrol - 1000mg per day
Green Tea Extract - 1248mg
Pomegranate Extract - 500mg per day (40:1 equivalent to 10,000mg) with an additional glass of pomegranate juice per day.
Odourless Garlic Gems - 6mg per day
Hydroxy Methyl Butyrate - 1500mg per day
Goldenseal - 1140mg per day
Soya Isoflavones - 30mg per day
Quercetin - 1800mg per day
Broccoli Sprout Extract - 1000mg per day (yielding 4000mcg Sulforaphane)
Melatonin - 20mg per day
PSK 16 (Each tablet - 0.65g proprietary blend, so 5 tablets per day would give us 3.25g. Taking us slightly over the 3g per day recommended dose).
Starflower oil extract as our GLA source at 2.2g per day.

To anybody who knows anything about the cocktail approach, my immediate questions are:

1. What dose and schedule is best for Antabuse?

2. What dose and schedule is best for Tamoxifen? I read somewhere it’s 160-240mg per day. Is that correct?

3. What dose and schedule is best for Verapamil? I believe Ben's PDF said 240 mg/day or 480 mg/day?

4. What schedule is best for Chloroquine? Do you only take it on the days you're on chemo, or do you take it every day?

Thanks again, guys. Any help is truly appreciated by a very worried but determined family.

All the best,

Tom

RE: Glioblastoma...Our Cocktail & Story

by GeeBeeEm on Mon Nov 11, 2013 09:43 PM

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Tom, I've been living with a GBM for 2 1/2 years now.  I studied Ben Williams's document extensively.

As to your specific questions:

1. Didn't use Antabuse

2. For TMZ - look at http://www.virtualtrials.com/temodar/dose.cfm

there isn't a specific dosage, but it is calculated based on weight and height.  If I recall correctly 75 mg/m2 during radiation and 150-200mg/m2 during adjuvant therapy.

3. Didn't use Veapamil

4. I did use Chloroquine - but only during radiation.

The two main drugs in my cocktail were Accutane (Roaccutane in the UK) and Celebrex.  I also took lots of flax seed oil.

Good luck

RE: Glioblastoma...Our Cocktail & Story

by SarahGrey on Tue Nov 12, 2013 01:55 AM

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Hi Tom,

Wow, that's quite a list of things your mom is taking...  Just curious if you've told her neuro-oncologist about all these supplements?  I know these are things Ben Williams has recommended, but to be safe, her doctor should know everything she's taking in case of any interactions, etc. 

Wishing you all well, Sarah

RE: Glioblastoma...Our Cocktail & Story

by tomformum on Tue Nov 12, 2013 11:38 AM

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Hi GeeBeeEm,

Thank you for your reply.

Well done for defying the odds! I really hope that my mum can do the same.

If you don't mind my asking, where are you at in your journey? Are your scans clear or things stable?

Thanks for your dosage advice :-)

Tom

RE: Glioblastoma...Our Cocktail & Story

by tomformum on Tue Nov 12, 2013 11:41 AM

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Hi Sarah,

We did ask him about supplements and he said he had no problem with us taking anything, though there was 'no proof' that they helped.

Ben Williams was kind enough to email me to say that our supplement cocktail looked great. We just have to look at the drug side of things now.

We're in agreement that we'd rather take the advice of someone who's beaten the GBM and researched so much as Ben has, than someone who tells us there's nothing we can do and just wait for the end.

Fingers crossed this works for her.

Tom

RE: Glioblastoma...Our Cocktail & Story

by PunkyD on Tue Nov 12, 2013 11:52 AM

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Dear Tom,

I couldn't help but read your and your mom's story.  It sounds like you guys are on your way to beating this thing!  Great attitude, support system, and medical/health plan. 

I'm definitely rooting for you all!  Never lose hope!

Punky

RE: Glioblastoma...Our Cocktail & Story

by tomformum on Tue Nov 12, 2013 11:55 AM

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Thanks Punky! :-)

We've already said, if this method works for us we're gonna do everything in our power to spread the word. People like us can't wait for the medical establishment to catch up.

Fingers crossed.

RE: Glioblastoma...Our Cocktail & Story

by tomformum on Tue Nov 12, 2013 11:57 AM

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For anybody well versed in the cocktail approach, my main question at this point is how and when do we take the Chloroquine? Is it every single day? Only on the days we're on chemo? Only the off days? I can't seem to find that information anywhere.

RE: Glioblastoma...Our Cocktail & Story

by vwxyz on Tue Nov 12, 2013 04:34 PM

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tomformum, how much does it cost in American  money to keep your mom on all these suppliments?  

RE: Glioblastoma...Our Cocktail & Story

by tomformum on Tue Nov 12, 2013 07:26 PM

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On Nov 12, 2013 4:34 PM vwxyz wrote:

tomformum, how much does it cost in American  money to keep your mom on all these suppliments?  

Hi There,

I wouldn't know. It is pretty expensive all combined. At a guess, I say we've spent somewhere around £250-£300 on supplements so far. That makes us pretty well stocked for about 6 weeks, I guess.

Tom

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