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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“It’s not the end, it’s just the beginning …”

Caption:  Peter Trayhurn and his famous Lost-At-Sea experience.  Video: courtesy of Marcus O’Brien

I first met Peter Trayhurn at the Hallwang clinic in Germany.

I was sitting in the dining room at the clinic, when in strode this incredibly tall man who commandeered himself a place at the table and started chatting confidently to everyone and criticising some cancer treatments he’d been researching.

I asked him who he was, and his reply was:  “Pete … Peter Trayhurn.”

He obviously expected some form of recognition from me, and when I looked blankly at him, he added (with that characteristic confidence that I would come to recognise as one of his traits) before he made a dramatic exit: “read my blog.”

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Please pray for my friend, Peter Trayhurn

Now more than ever, my friend, Peter Trayhurn, needs your prayers.

I first met Peter (an Australian) at Hallwang, the German oncology clinic, in 2013.  He went there with Stage 4 Colo-rectal cancer, having been given six months to live by his oncologist in Australia.  His cancer vanished within six weeks’ of treatment, only to rear its head again when he returned to Australia.

Since then, he’s been playing a painful game of whack-a-mole with the cancer.

What’s remarkable is that Peter has outlived most of his doctors’ worse predictions.  He’s outlived most of his friends on cancer forums.  And he’s done so with a very good quality of life.  He’s driven himself all over Germany, flown all over the world in the search for cures, gone scuba diving, lived on an ashram and done yoga.  And been a father and husband.

He’s also the author of a blog:  http://petertrayhurn.blogspot.co.uk/.  It’s a step-by-step account of his cancer journey.  It’s full of infuriating typos and spellos, but it is also full of the latest treatments.  It’s full of his zest of life.  And I can vouch for the fact that the positivity and optimism in his posts is real and authentic, and not a mask.  I think he’s the closest I’ve come to a genuine cancer saint.

A few weeks ago, his condition worsened when he was in Australia.  He was throwing up non-stop and wasn’t absorbing nutrients. I managed to persuade him to Skype me when he was in hospital.  I saw how bad he was.  He was in agony throughout the call despite morphine.

I whispered nervously to him:  “Is this the end?”

He looked into the screen and a small smile lit up his face.

“No, I think it’s just the beginning,” he said.

Please pray for my friend Peter.  Now more than ever, he needs your prayers.  And please also pray for his family.  For his children, who cry every night in their beds.  For his wife.  For his doctors to make the right decisions.  Pray that he pulls through the surgery to help him eat, that his guts heal, that the pain lessens, that he manages to eat, that the cancer vanishes.

Please pray.  Because the world needs more people like Peter to show us how to remain human despite the inhuman trials.   Who can pull smiles out of pain.

****

http://petertrayhurn.blogspot.co.uk/

Recurrence Rollercoaster – #2 Headless chicken

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 because of nerve damage (to the brachial plexus) caused by tractioning of the arm during surgery.  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, the cancer recurred.  This is a summary of the options I was exploring after the recurrence.

We all want tidy endings to healing journeys.

We’re programmed through myths and story-telling and Hollywood Blockbusters, to expect tidy endings, happily-ever-after fairy-tales.

With the recurrence, it was as if the story I was writing for my healing wasn’t coming through. I know loads of people who have done the surgery- chemo-radiotherapy route and the cancer vanishes and they live happily ever after, in remission for the rest of their lives.

But I was on a different story track.

Writing this with the luxury of retrospect, I was running around like a headless chicken trying to find ways to get rid of the cancer.

chicken

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Happy 2017 and a video: Natasha Laing – from Stage 4 breast cancer to remission

Happy 2017.  I am still alive!

To all of you who are struggling in your journeys with cancer, I want to share this interview of a friend of mine, Natasha Laing.

Natasha had Stage 4 breast cancer with mets to the lungs and bones which deteriorated until she was placed in a hospice.

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Blogs I follow

These are the blogs I currently follow:

http://www.cancertreatmentsresearch.com/ – amazing site set up by a scientist with a PhD in Physics – his wife and mother got cancer.  Well-researched, current and traditional “cures” and well-written, de-mystifying scientific jargon into plain English.  Good for information on Salinomycin [the new wonder cure].

http://www.triplenegative.co.uk/blog/ – I like Claire’s blog because she’s open about her life, her treatments, her strength, her optimism.  Good, clear explanations about the use of immunotherapies and cutting-edge treatments for breast cancer.  Triple-negative breast cancer is one of the toughest to treat. Claire is proof it is treatable.  Update 24/9/2017:  Claire Grant passed away in September 2017.

http://petertrayhurn.blogspot.co.uk/ – Peter Trayhurn is a friend of mine – I met him at Hallwang Clinic.  Peter was diagnosed with Stage 4 colo-rectal cancer about 4 years ago.  Well, he’s still alive and enjoying a good quality of life.  His blog isn’t the easiest to read or follow.  It tends to be a description of what he’s doing, but his optimism, faith and positiveness are infectious.  Give this man a huge round of applause for his intelligence and courage to follow his own wisdom and heart!  Update 2017:  Peter Trayhurn passed away early 2017.

http://thinskin.org/ – This is not a cancer blog.  Nora Logan is a liver transplant recipient. She hopes that this blog might provide others with some solace in their darkest moments and the knowledge that they’re really not alone and there will be light at the end of the tunnel.  I like her blog for her honesty and humour and great writing.

https://adventuresinlivingterminallyoptimistic.com/ – another Stage 4 colo-rectal patient.  Written by an oncology researcher (oh, the irony of it all!) who was diagnosed with Stage 4 CRC.  Good explanations of immunotherapies for colo-rectal cancer which are applicable to other types of cancer.  Good if you want systematic explanations and research and studies.

Recurrence Rollercoaster – #1 – Why Tamoxifen didn’t work for me

Emotional-Roller-Coaster-Ride

So, for newcomers, a quick recap of the back story:  I had a mastectomy, and when I woke up from surgery, discovered my left arm was paralysed.  This had been caused by damage to the brachial plexus nerve that controls the arm.  I had to have further surgery to free the injured nerves.

It took about nine months before I was finally able to lift my left arm, and control it.  It was a dark time, and I remember being in a state of numbness most of the time.  I still look back on that period with a sense of incredulity, and amazement that I got through it.

In those nine months, to give my arm the best chance of healing, my surgeon and I took the decision not to have any active treatment in case they damaged the nerves.  I was also hoping that the treatments I’d had at Hallwang Private Oncology Clinic in Germany would help.

tamoxifen-blocks-estrogen-receptors

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Fulda conference #9: Amygdalin (Vitamin B17/Laetrile) – advantages and risks (Dr Martin Stoppler)

FuldaMarket1

The Christmas market at Fulda. image credit: http://www.germany.travel/

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.

Dr Martin Stoppler studied medicine from 1980-86, and specialised in general medicine in 1992 and naturopathic treatments in 1996.  He has been practising in his own complementary therapy clinic since 1992.  He is a founding member of the registered society Forum of Orthomolecular Medicine.

He talks about his experience with amygdalin together with other therapies, for example, GcMAF for 2 years in combination:  “From my experience GcMAF also has an excellent effect in depressed patients. However, since the possibly existing interference must be suppressed before. I use GcMAF in acute and chronic inflammation, such as rheumatoid arthritis successfully. In addition, I inject directly into GcMAF malignant tumors and involved lymph nodes.”

Also of interest is how he has used B17 in the face of opposition from the German authorities as B17 is on the list of dangerous substances in Germany.  His house has been broken into several times by the police, he has been threatened, and his dog almost killed.  He has persisted because he has seen B17 work for his patients.

He came across as very passionate and caring for his patients, and willing to go the extra mile for his patients.

Dr med. Martin Stoppler

http://www.aprikosenkerne-gegen-krebs.de/

practice- your-doctor-in-internet.de, praxisihr-arzt-im-internet.de

********

Brief background

Dr Stoppler was inspired by a book by Phillip Day “Cancer”.

Dr Hans Nieper was the pioneer of B17 use in Germany (1928-98)

Dr Kanematsu Sugiura

In Germany, B17 is on the list of dangerous substances.

In 2006, 2009 and 5 weeks’ pre-conference, the police visited Dr Stoppler.  Went to his practice and his home and threatened to kill his dog.

He went through 1.5 years of court proceedings, Euro8,000 fine.  He gets around it by ordering the drugs on behalf of the patient.

What is B17?

B17 is not really a vitamin.  It is a substance found in 1,200 plants.

LD50 Mouse 443mg/kg – lethal dose

LD50 Rat = 405mg/kg – lethal dose

Recommended 9g to 12-15g/kg – human dose

Side-effects of B17:

Results in high concentration of beta-glucosidase.

Oral version – diarrhoea, GI symptoms, constipation.

Herxeimher’s reaction – toxins or tumour cells degrading.  Chills, shaking and fever.  Ozone first – non-activated MMS – liver detox and support.  Bicarbonate – IV C 20-42g

Why has a patient become ill?

– Activation or excess of free radicals.  Toxins e.g. aluminium and lead, UV.

Main factors

Stress, that the patient sees as negative.  Psycho-oncology

Also – teeth – deficits in micro-nutrient field.

Digestive system.

Other treatments

102mg sodium selnite

Germanium sesquioxide – works through oxygen pathway

DCA – bodyweight dependent – IV 15mg/kg of bodyweight

DMSO – IV – saline – transports B17.  Not in a glucose solution.  5ml didn’t work – nausea and vomiting.  05-1ml/250ml.

Dr Pachmann’s lab in Bayreuth – Maintrac

Use of magnetic mats and cortisol for allergies

GcMAF protocol

GcMAF – injects into tumour and ascites.

uPAR – Urokinase-type plasminogen activator receptor – 400ng

Vitamin D level – 200-300 or 400-500 if using GcMAF.

3,000 IU orally

Decristol – 10 capsules 200,000/day [this is Vitamin D in Germany]

Doesn’t use nagalase test because of fluctuations during the day

GcMAF – IV twice weekly – 400ng

B17 protocol

B17 – phasing in 3g-6-9g.  1st week Monday, Wed, Fri.  2nd week, twice weekly.  6th week – oral administration

Dr Stoppler starts with 9g.  Causes Herxheimer’s depending on patient.

Kinofsky index of 60-70 drink a lot.

4 hours of treatment – exhausting for patient.

B17 supplier in Hamburg – 3g/5ml solution

Would like more research – is there an upper limit?

400ml/kg (bei 70kg = 31.5g)

B17 is not a monotherapy

uses DMSO as a transport molecule = 0.5ml

Access to Medical Innovation Bill about to become law in UK

The Access to Medical Innovation Bill will set up a database to collect the methods and results of all medical innovations by individual doctors across England and Wales so that successes and failures can be seen and shared by other doctors, scientists and researchers.

Lord Maurice Saatchi who sits in the House of Lords and his team have been working to get a Medical Innovations Bill approved.  It’s only taken them 4 years.  The final step is for the Queen to formally sign it.

Apparently, this database will drive forward evidence-based, medical science.

Many doctors innovate today, in their clinics, trying new techniques and drugs – but if no one knows about these innovations, other doctors cannot adopt and perfect them.

Lord Saatchi was motivated to create the Bill after the death of his wife, from peritoneal cancer.  She was a novelist, a scholar and promoter of poetry, a publisher and a theatre producer.

I’d be interested to see how this Bill will be implemented.

I think this is supposed to be a step towards openness about cancer treatments, in particular, non-allopathic treatments.  And hopefully it will encourage doctors who have tried non-allopathic treatments to share their successes.

Whether this will protect them from the long-arm of the law who is still on the side of allopathic medicine, I have serious doubts.  Why share if all you’re going to get is a jail sentence for using B17?

I am still not clear how this will work.  Is it just a database of information?  Is it compulsory?  If it is not made compulsory, why would doctors bother with the red tape of sending in their results?  Who is going to enforce this Bill and make sure doctors toe the line?

There’s also the problem that for many non-allopathic doctors who treat cancer, there is no one set protocol.  Let me clarify:  an oncologist would have a set protocol for treating cancer, which is determined by trials and statistics.  Every oncologist would follow the same set protocol.  For a non-allopathic doctor, treatments vary according to the patient.  So there is one-size-fits-all approach.  How then to replicate any success if it’s dependent on so many variables?

And there’s the issue of the Cancer Act 1939 which persecutes any treatment (mainly non-allopathic is my understanding) that purports to be a cancer cure.  I can understand why it was put in place because cancer patients are vulnerable and desperate for cures, and there are a lot of quacks and con-men out there.

I cannot see non-allopathic doctors risking their livelihood by sending in their results.  Also, all the non-allopathic doctors I’ve come across are far too busy trying to save the lives of their patients to bother with more red tape.  And justifiably so.  I would rather a doctor be focused on me than paperwork.

What I’d like to see is the government supporting innovation, the way they do in Germany where off-label treatments are permitted, and incredible success stories exist, and doctors and clinics are willing to take risks because they are NOT persecuted for innovation.  This Medical Innovations Bill doesn’t go far enough and may in effect open a can of worms by exposing well-meaning doctors who are stepping off-piste to persecution.