Recurrence Rollercoaster – #3 The GcMAF route – the Good and the Bad

I’ve had mixed response to my previous post Recurrence Rollercoaster – #2 The GcMAF route with readers posting comments about their experiences with GcMAF, and their opinions on Goleic, Ruggiero and Noakes.

I’m going to keep this as succinct as possible so I can get on with the rest of my saga, so that you can make your own mind up.

The Good

  • We got the (theoretical) full doses of Goleic every day – that was one vial per day.  RRP was £400 per vial
  • Some people received an additional delivery method of suppositories
  • The Goleic injection was administered into the veins feeding the tumours, by guided-ultrasound by a very good radiologist and the creator of Goleic (Prof Ruggiero)
  • We were shown on ultrasound, the instantaneous effect an injection of Goleic had on the creation of nitric oxide by the body.   They scanned the spleen to see monitor the activity and increase in blood supply which was caused by the creation of nitric oxide by the Goleic.  An increase in blood supply was a good response for the macrophages.
  • We were shown another way of administering Goleic, via a nebulizer.
  • As there was no response after my first week, I stayed another week, and managed to negotiate this second week free.
  • We all went back with a goody bag of some Goleic
  • It was a chance to meet other people who were using GcMAF.  There were some very tragic stories of Stage 4 cancer.
  • Prof Ruggiero was charming and professional.  He was a master of the ultrasound.
  • Everyone got scans of their bodies via ultrasound.
  • Switzerland is very beautiful

The Bad

  •  All patients were made to sign a non-disclosure agreement, forbidding us from discussing GcMAF, the clinic etc. including social media and e-mails.  We were told not to discuss our treatments with each other.  All of us found it over-the-top but we signed because we were too afraid not to, afraid that this amazing breakthrough treatment would be withheld from us.  Not even Hallwang Clinic or any other cancer clinic placed such an onerous condition on us.
  • What was more ridiculous is that we were not allowed to keep a copy of the NDA – what were they trying to hide?  Yes, I should have insisted, but I felt very much at the mercy of the clinic.
  • The same research findings were trotted out over and over again during the lectures given to the patients.  It was a very small sample of patients, understandably so, as it was such a new product.  I began to get the impression that we were there, not to be cured, but as guinea pigs, part of a trial, so that they could increase their sample size and get more proof of whether it worked
  • The clinic weren’t interested in the supplements that we were taking.  They had a set list of supplements (Vitamin D, BCAA, MAP, GcMAF yoghurt, and a few others) that they used, and anything else didn’t matter.  This allowed them a get-out clause in the event the Goleic didn’t work: they would claim that our supplements stopped the Goleic from working.
  • There were 3 people who were ex-cancer patients who had been cured using GcMAF.  And that was the crux of the issue:  they were using the old form GcMAF, and not Goleic.
  • There were a few lectures on how Goleic worked, and a lecture on nutrition. That was the extent of the education.
  • The Paleo diet was prescribed.  To give the staff credit, one of the meals was prepared Paleo style and it was very tasty.  There was no interest from the staff in other diets, e.g. the ketogenic diet.  Any attempt to introduce other topics was met with a frosty reception by the staff.
  • I may or may not have got shrinkage.  Prof Ruggerio maintains I did, but my own radiologist and surgeon could find no difference.
  • It wasn’t a proper cancer clinic.  If you had a medical emergency, you would have to go to the nearest Swiss hospital.  It wasn’t a residential clinic either, so we were responsible for finding our own accommodation, and getting to the clinic.
  • At the end of 5 days, I asked for ultrasound measurement and was told I had to wait a full 7 days (i.e. the following Monday) before having another ultrasound.  I was taken aback – it felt like they weren’t interested in my results, and wanted me out just in case it hadn’t worked.  As I’d booked to leave at the weekend, I decided to stay another week just to give Goleic the best chance to work.  This meant cancelling my non-refundable flight.  I was also annoyed because this had not been stated in the website which just said that it was a minimum of one weeks’ treatment, but three weeks was best.  Nowhere did they state that we would only be measured the following week.  Another friend of mine, Claire Grant, got caught out by this, and decided not to stay a second week.
  • They weren’t interested in nagalase test results
  • They weren’t interested in the VDR test for response to GcMAF
  • There were no treatments at the weekend, apart from the yoghurt (or suppositories)

Bear in mind there are many different versions of GcMAF.  Goleic is just one variant.  There are many different manufacturers of GcMAF.

And that there are cancer clinics or integrative doctors who do use GcMAF, but always in conjunction with other treatments (for example the Paracelsus in Switzerland).  My friend, Donna Lockyear, used Goleic, then GcMAF as a monotherapy based on the recommendations of ImmuneBiotech.  She suffered a recurrence.

Finally, I’ll leave you with a review of the clinic and Goleic by Claire Grant, in her outstanding blog:  triplenegative.co.uk:

https://www.triplenegative.co.uk/gcmaf-unfairly-interviewed-or-a-fair-synopsis/

 

 

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Recurrence Rollercoaster – #2 The GcMAF route (and why you should always kick the tyres of any cure)

A quick re-cap for newcomers to this blog:  I was diagnosed with breast cancer (Stage 1) and spent approximately 1.5 years doing alternative treatments, but the tumour kept growing so I had a mastectomy.  I woke up from the mastectomy to find my left arm paralysed and numb due to  nerve damage (to the brachial plexus) caused by tractioning of the arm during the mastectomy.  I had to have further surgery to release the nerve and because of that, I had no conventional adjuvant treatment.  Nine months after the mastectomy, I finally regained use of my arm.  Nine months after the mastectomy, the cancer recurred.  This is a summary of the options I was exploring after the recurrence.

I’m going to try to update my blog more often.  I regularly check the other cancer blogs I follow and start getting antsy when I don’t see any recent updates.  I’ve also had readers e-mail me with a polite: “How are you?” which reading between the lines, seem to me to also be asking: “are you still alive?”

It must feel as if I am dragging out the whole recurrence and cancer journey story.  But I find it painful sometimes, relieving what happened and the humps and bumps along the way that have derailed me.  Early on I made a choice to write in retrospect so that I would have the wisdom and perspective of distance to give me objectivity.  But doing so has meant that I’ve lost a lot of the immediacy of the moment and have to rely on medical reports on e-mails.  Fortunately I kept very detailed e-mails.

This post is about my visit to a clinic which used a form of GcMAF called Goleic.  The clinic has since been shut down and I do not think that the company who was running the clinic, ImmuneBiotech, is running any more clinics (thank god).  It’s also a post about smoke-and-mirrors, and needing to kick the tyres of any cancer treatment that purports to be a cure.

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GcMAF/Goleic/Bravo Probiotic – a few tips

Yogurt

For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

GcMAF:
GcMAF Cancer:

1.  Method of administration

What’s in this post can be found on the gcmaf.eu website, but I wanted to share a few tips on how to use GcMAF/Goleic:

1.  Goleic can be administered the following ways:

– by injection, intramuscularly into the underarm (see gcmaf.eu website for method).  Another site to consider is near the spleen – check with gcmaf.eu.

– intravenously – you will need to find a sympathetic integrative practitioner who’s willing to do this for you

– by nebuliser.  This is a gizmo that’s used to vaporise medication and is usually used by asthmatics.  Yes, there are macrophages in the alveoli of the lungs, and goleic has the right molecular size to be used in a nebuliser.  The dose is 0.5ml of goleic in 5ml of sterile saline.  You cannot administer GcMAF (the old style) via nebuliser.  You can only do it with goleic.

– by suppository.  This is especially good for people with liver or pelvic mets.  I don’t know how you can get GcMAF/goleic suppositories though – contact gcmaf.eu

2.  Do NOT:

– inject goleic/GcMAF into tumours – you can seed the tumour.

3.  How much?

– GcMAF/goleic may be dose-dependent.  The minimum dose is 0.25ml.  The maximum daily dose is 2.2ml (the whole vial).

4. How often?

– the ideal is daily but not everyone can afford the expense.  Once every 3 to 4 days is acceptable.

2.  GcMAF may not work

I met two people at the Immune Biotech clinic in Lausanne, Switzerland, for whom GcMAF worked.  One had stage 4 ovarian cancer, and the other stage 4 prostate cancer.

These are the only two people whom I know of that it’s worked.  I know that Immune Biotech has published a study on the efficacy of GcMAF, but I’ve heard rumours that these people may have come to the clinic from German cancer clinics, so that it was the German cancer clinic treatments that were working.

I know of more people for whom GcMAF did not work, even though they were injecting 0.5ml every 3 days.

There are a number of reasons why GcMAF may not work:

– Vitamin D Receptor not compatible with GcMAF

– immune system status not able to support optimal macrophage activity, and inhibiting any GcMAF activity.  The only way you can find out your immune status is to get blood tests for it.  And then you have to correct the immune-system imbalance in order to get your macrophages up-and-running.  These tests are not done at the GcMAF clinic.  By immune system tests, I refer to the interleukins, the NK cells, the histamine level, the nitrosamine level.

– GcMAF used as a monotherapy.  Despite what the website states, I do not personally believe that GcMAF can be used on its own as a single therapy.

So if you’re thinking of going to the GcMAF clinic, I suggest you get some references, and speak to these references personally.

Please also check out the Facebook site:  https://www.facebook.com/groups/439553602725764/?fref=ts

3.  Other types of GcMAF

There’s the European version of GcMAF sold by ImmuneBiotech, and the version by Sansei-Mirei in Japan.  A number of people have told me that they use the Japanese version because they believe it’s more stable and more powerful.

4.  Bravo Probiotic

Bravo Probiotic now comes in an Easykit.  It is definitely easier to culture than the old form.

However, there are some disadvantages to this EasyKit:

(i) with the old kit, you could re-culture both compounds and stretch the cultures for longer.  This was not recommended by Bravo Probiotic, but I know people who did this, especially for those who got the old Maf314 cultures.  With the new kit, you cannot re-culture from an existing culture.  This pretty much ties you into buying replacements, whereas with the old kit, you could stretch out the cultures.  So in one fell swoop, Bravo Probiotic have managed to stop people from re-culturing (and sharing cultures) as well as tying you into their programme.

(ii) we don’t know how much colostrum is in the EasyKit.  With the old kit, colostrum had to be added in separately so we knew the exact amount in it.

(iii) the old kit had a third compound of probiotic powder that had to be sprinkled on the final mix.  The EasyKit does not have this third compound – does that mean it’s not as effective?

The cost of Bravo Probiotic — GcMAF Yoghurt — Maf314 — someone find me a camel!

For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

Updated 21 June 2014 – there is a new version of Bravo Probiotic called EasyKit – like it says on the can it is easier to prepare and is also slightly-cheaper because it comes with colostrum already included.

Updated 21 March re. daily cost of Bravo Probiotic, with adjustments for interest rates and also addition of US$ cost.

I’ve previously posted about Maf314 (which is the original version of Bravo Probiotic).

Now thanks to the generosity of friends and family who donated to my cancer-fighting fund, I’ve been able to afford a new set of Bravo Probiotic cultures.

GcMAF Success

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GcMAF at work — Bravo Probiotic — myths of the dangers of dairy products for cancer patients (a talk by Prof. Marco Ruggiero)

For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

Please note:  The opinions expressed in this talk are academic considerations only and they are not intended to represent medical advice to anyone. If you need medical advice, please refer to your healthcare professional.

To listen to the talk:  https://soundcloud.com/bisforbananascisforcancer/02-12-ruggiero-gcmaf-in-action

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The GcMAF clinic in Switzeland

What is GcMAF and what is its role in cancer?

GcMAF is like a hormone, a neurotransmitter, a messenger that our body uses to promote wound repair, immunity and improve immune surveillance.

The concept of being cancer-free does not exist.  We always have cancer cells in our body, even from the moment we are born.  This is different from having a cancer that has a mass and infiltrates in our body.  The reason we do not have cancer of this sort is due to a mechanism called immuno-surveillance – the immune system is able to recognise cancer cells and destroy them.  This is called the induction of apoptosis provoked by the immune system.  But sometimes the immune system is no longer able to recognise and destroy the cancer cells and the cancer cells form a mass that we define as a tumour.

GcMAF was discovered by Prof Yamamoto in 1994.  Professor Ruggiero collaborated with him in 2010.

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GcMAF (Maf314, Bravo Probiotic) ice-cream

Updated March 2016 – For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

Updated 20 Feb 2014 – please note, freezing Maf314/Bravo Probiotic kills the GcMAF so this is more of a dessert, then a live culture.

For more information on GcMAF and the GcMAF clinic in Switzerland:  http://www.gcmaf.eu/

As mentioned in my last post on GcMAF, I had a glut of Maf314 over the festive season (because each batch makes enough for two people for a week).

Rather than pour it down the drain, I turned some of it into a soft strained yoghurt/cheese which I mixed with chopped chives and garlic.

It was so good that someone in the household finished the whole bowl in one sitting (and then proceeded to get the squits – that’s how potent it is).

This week I cover how to make Maf314 ice-cream.  When I say ice-cream, it’s not exactly ice-cream.  Real ice-cream is made from a custard that’s made with egg yolks and cream.

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GcMAF (Maf314) cheese

Updated March 2016 – For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

I reported at the start of the year that I had a glut of GcMAF yoghurt, and offered it to anyone who wanted some, but there were no takers.

GcMAFCheese0

Help! I’m drowning in GcMAF yoghurt!

The thought of pouring all that goodness down the drain broke my heart, so I had a brainwave, and decided to turn it into a drained cheese, and ice-cream.  I went onto the internet, and found several recipes for kefir cheese, and it looked fairly easy to make.

GcMAF Cheese is not cheese made with rennet. Instead, it’s the equivalent of cottage cheese, made by draining the yoghurt through fine muslin and a strainer, so that the solids get left behind.  I used three layers of muslin or cheesecloth (I boiled the cheesecloth and washed it to make sure I got all unwanted residue out).

GcMAFCheese1

The start of GcMAF Cheese. GcMAF yoghurt poured into a strainer lined with a triple layer of cheesecloth.

I let it drain over several days, adding more whenever the level dropped – the resulting ball contains about 2 litres of concentrated GcMAF yoghurt.   The whey collected in the bowl underneath and I drank that.

GcMAFCheese2

GcMAF cheese after several days of draining and topping up.

I then chopped up chives, and added crushed garlic and seasoned it with salt, pepper and olive oil.

GcMAFCheese3

The “cheese” has the texture of Philadephia cheese spread.  It is slightly tangy, with a little whiff, but not as pongy as goat’s cheese and should work well as a dip for carrot and celery sticks.  Or just imagine spreading that cool softness on a piece of hot buttery toast … umm.

Update 25 Jan 2014 – someone in the household ate the whole bowl of GcMAF cheese in one day, and reported that it made him feel sick, and he also got the squits – well, serve him right for being so piggy!  It just shows how potent GcMAF is!

[next episode – GcMAF ice-cream and blueberry compote]

Fulda conference 2013 #1: Integrative cancer conference

Updated March 2016 – For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

Updated 28 Dec 2013

Here are the highlights of the integrative cancer conference I attended on 30 November and 1 December, 2013, in Fulda, Germany.  I will be writing individual posts on each topic.

First a huge-thank you to Dr Heinz Reinwald for letting me and Peter Trayhurn attend this conference, and also for giving us his time and consideration, and a discount on the conference fees.

(I’m not sure what the practitioners made of having two patients in their midst, but we were very discrete and were there on a fact-finding mission to find out what was the latest in integrative approaches to cancer, and to suss out which were the doctors who were doing leading-edge research.)

I was impressed by the organisation of the conference.  The conference hotel was luxurious, the room was comfortable, and there were German-English translators as the majority of the talks was in German.  The food at mealtimes was fantastic, four-star buffets with plenty of ketogenic diet options.  Everyone was friendly, which was very important for me.  The quality of the speakers was excellent, world-class, and if I had the money I would go again next year.  It was a bit of a steep learning curve for me at times – if you are a patient and interested in next year’s conference, I suggest that you bone up on the causes of cancer.  If you have a degree in biochemistry that would be helpful as some of the lectures are fairly technical!

Now that I’ve been going through my notes, my overall impression is that the conference was a good mix of providing new information on approaches to cancer treatments, as well as showcasing the products of the sponsor, Dr Reinwald, in particular, Master Amino Acid Pattern (MAP) without being too much of a hard-sell.

Getting information that is not available on websites is not easy where cancer treatments are concerned – so much depends on where you are looking, and a lot of research is still not readily available.  So to be in the midst of practitioners who are sharing their knowledge, backed up by hard-core research and trials, was immensely valuable – thank you, Dr Reinwald!  And to be able to get together world-class practitioners speaks volumes for Dr Reinwald’s reputation and organisation and products.

Conference for Integrative Medicine in Fulda

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The Christmas market at Fulda

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Supplement: GcMAF yoghurt — Maf 314 — Bravo Probiotic

GcMAF Success

GcMAF yoghurt success!
MAF314 (large jar left), Compound 2 (large jar right), Compound 1 (small jars front)

Updated March 2016 – For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

Update 8 May 2014: Bravo Probiotics (the maker of GcMAF yoghurt) now have a new EasyKit that contains powdered colostrum – it signficantly cuts the time needed to make the yoghurt and also the cost of the yoghurt as liquid colostrum is very expensive.

Updated 22 March with new, cheaper source of liquid colostrum in the UK

Updated 16 March 2014 with information on yoghurt makers, and links to more recent posts on Bravo Probiotic

Updated 20 Feb 2014:  Please note that there is a difference between the propagating process for Maf 314 and Bravo Probiotic.  For Bravo:  Compound 1 must be cultured afresh each time from the powder and not from the yoghurt.  Compound 1 contains GcMAF.  Compound 2 can have a life-cycle of up to 8 weeks.  Therefore it is necessary to buy the Bravo Probiotic culture if you want to do this properly, you can’t rely on a culture that is a year old (like I have).  I highly-recommend buying a culture from Bravo – that way, you know that the GcMAF and probiotics are active.

Updated 26 January 2014 with more photos about the ideal vs the actual real-life process of making GcMAF yoghurt, and observations from the Fulda Integrative Conference 2013.

And there are 3 videos on how to make Bravo Probiotic, check out:  http://www.bravoprobiotic.com/index.php/storage-of-products/9-sezione1/6-2-how-to-prepare-bravo-probiotic

See also my post (March 2014):  GCMAF AT WORK — BRAVO PROBIOTIC — MYTHS OF THE DANGERS OF DAIRY PRODUCTS FOR CANCER PATIENTS (A TALK BY PROF. MARCO RUGGIERO)

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I’ve blogged previously about GcMAF, a protein in our immune system.

GcMAF stands for glycoprotein macrophage activating factor.

GcMAF activates macrophages (white blood cells that eat cancer cells).    However, viruses and malignant cells like cancer send out an enzyme called Nagalase that blocks production of GcMAF.

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