Friday, October 25, 2013

3 excellent years later

Reading back, I see that the more normal my life becomes, the less I need to write this blog as there is little new information on the Melanoma front and more general family and literacy news, which falls out of the ambit of the blog. I do have the odd gentle enquiry about whether I'm still around or if the silence indicates that I'd shuffled off!

I've had three Dendritic Cell Vaccines this year. Two caused big immune reactions and the third a very mild one. Strangely enough, I have also had two huge unexplained immune reactions which have been out of the known range of a vaccine. Such is the life of a lab rat!



This picture show the tube that contains 2 million of my own white dendritic cells that have been exposed to my own cancerous tumour cells, (which were removed by a liver resection two years ago and carefully stored frozen), taught to recognise them like sniffer dogs and then ready to be put back to do their job of attacking the tumours in my body. There are only 3ml of vaccine. It is quite miraculous and I am so lucky to be able to access this, which is the forefront and future of cancer medicine. Ali has studied this in Molecular Medicine this year, so he has the best understanding of it all.

The second of the unexplained immune reactions has been in the last week and has reduced my usually happily busy and productive life style to something far less exciting. I have had the classic immune response; temperatures and shivers, pain in joints, the tumor in my chest swelled up and felt like a cricket ball, low blood pressure, racing pulse and general flu like symptoms. It seems to be tapering off now, but I have had to take the decision to discard the next vaccine that was ready and due today as even the drive to Pretoria seemed too much. There is also the risk that over stimulating the immune system that is already compromised may cause auto immune disease. A risk I'm unwilling to take.

The next debate that I've been having is about the risks associated with the exposure to radiation which is in the CT scans I have regularly. I think I've had 10 already and 3 PET scans. When I walk through the scanner at the airport, I always set the alarm off! I am radio active and probably luminous too.

The surgeon who took the tumors from my liver for the vaccine said that I was more likely to die of radiation than cancer!

I have tried thermography, which shows masses by delineating the heat around them. Apparently tumours give off a lot of heat. Unfortunately the test was unable to identify the big lymph gland tumour in my chest, so while uninvasive and causing no harm, this was not a solution. I have also investigated PET scans and MRI scans and the advise I got from a highly regarded radiologist was to continue with the CT scans. As I have plans for my future, I am not keen to be treated like a terminal patient, where palliative care would allow decisions that would be appropriate if there was no future to compromise.

On a lighter note, I do think it is possible that these two immune reactions may have happened because of excellent healing that happened on lovely holidays.



Italy in July with Tim and Nicola. Rome and 6 glorious days with Phil and Di Duff at la Toscana in Tuscanny.

Sienna with Di


Berlin the marathon map, Nic took 30 minutes off her London Marathon time. There were 100 bands playing and Berlin was at her best. 

Budapest, the Fisherman's Bastion

Berlin Opera la Traviata, Nic's first opera

The healing hot spring baths at Gelert, Budapest

Also, my work with these perfect cherubs and the wonderful volunteers is definitely healing.
Learning to distinguish b and d using thumbs. Put together they make a lovely bed!

The Link has grown exponentially in the past three years. This year, a centre opened at Parktown Public School, the centre at Yeoville extended to include maths, Klopper Park opened and we have laid the foundations to open a new centre at Holy Family College in the new year. At the moment, we are reaching 653 children a week and most of them are getting 2 45 minute sessions each. It is thrilling work, which certainly has a lot to do with healing.

The mystery continues to unfold. Ekard Tolle says the future is a construct on your imagination, so I'm happy to leave it at that.