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.

This is the post I should have written when I got back from the clinic, but I was still processing what did or did not happen at the clinic.

I’d already tried GcMaF for 3 months when I was first diagnosed.  The GcMAF was manufactured by a company called ImmuneBiotech.  It was very expensive – about Euro600 for a 2.2ml vial enough for eight shots of 0.25 ml to be administered sub-cutaneously.  I had two shots per week, so each vial lasted me one month.  The advice was to test for something called nagalase levels before starting the protocol and after two months. My nagalase levels did fall slightly but the tumour actually grew in the seven weeks I trialed GcMAF, and I did not have Euro600 to spend on GcMAF as I was already spending a lot of money on complementary therapies, so decided to stop.

So what made me decide to go to the GcMAF clinic in Lausanne?

I think it was partly due to peer pressure.  A number of my friends were trying it, or knew of friends who were trying it, and some had experienced shrinkage of tumours.  I was still searching for a way to get rid of the recurrence without having to resort to yet more surgery and go down the allopathic route.  And there were a few naturopathic doctors who claimed to have had results.  Also, there were the research papers by Yamamoto who had patients who achieved remission.

Then there was glowing promises on the website of ImmuneBiotech when they first launched the clinic.  The page has been taken down, but I copied the text of the first advertisement for the clinic which stated (verbatim):

“The cost is a total of €2,400 a week, and we suggest six weeks. Everything you need to take is included in the cost. Initially its a visit to you, but the clinic is opening in Switzerland in September.

We are sufficiently confident that we offer a refund of your course fees if you are not cancer free a year after the course, or fully recovered from CFS six months afterwards.”

After the clinic was launched, the cost went up to Euro3000 per week, with a claim that some patients had 10% to 25% shrinkage of their tumours in the first week, and they would give a full refund if there was no shrinkage.  It was too good to be true.

Apparently they were using a new version of GcMAF called Goleic, which they claimed was 200 times more potent than GcMAF.  No explanation was given on how they calculated the potency.

Another convincing factor was that the treatments would be administered and monitored by the creator of Goleic, Professor Dr Marco Ruggiero who was a radiologist by training.  What could be better than to have the ultimate specialist supervise the treatments!

I e-mailed all the people I knew who had gone to the clinic, and even found a friend’s friend who had experienced the 25% shrinkage in her tumours.

And finally, my friend Peter Trayhurn was going.  Peter and I had been through a few adventures when we met at the Hallwang Clinic in Germany.  He was always researching the latest treatments. This would be another adventure.  Just Euro3,000, and the possibility that I would get a good response to the treatment.

What was there not to like?