London life

Thursday 27th February 2014

Back in London, in sunny Wapping, with little to update on treatment.

Although I thought the sensation of food 'sticking' when swallowing had cleared completely it is still apparent so won't be able to assess the effects on the main tumour until the CT scan followng third treatment.

Otherwise feeling like a 'normal' 55 year old bloke. Been enjoying family visits and a laughter filled night out at the Comedy Store watching the extremely talented Lee Simpson and gang.

As Simon McRae says "I recommend as much laughter as possible" (don't underestimate the power of Monty Python or cheap gag movies like The Hangover, Bridesmaids, Crazy Stupid Love, etc – not that I'm suggesting in any way the Comedy Store Players use cheap gags!

Cancer stem cells

Friday 21 February 2014

Final day of treatment 2 – a quick, half hour ozone treatment. Then back to London for 4 weeks before round 3 in Duderstadt, starting on the 18th March.

There is a developing discussion over cancer 'stem' cells that appear to be able to avoid chemotherapy death and may be the cause of both metastasis and recurrence – drugs such as Salinomycin and Metformin claim to be able to target the 'stem' cells.

The Biosceptre nf p2x7 treatment however does not need to differentiate between cancer cells as the targets all have the marker in one form or another.

I met Peter Trayhurn yesterday at the clinic – he's also from Sydney and has been treated here and elsewhere over the past 18 months – he has far more knowledge and experience than I can begin to explain and also has a strong belief in Biosceptre's and Dr Neßelhut's approaches and a shared admiration for Julian Barden.

Another blog I think is quite useful – http://www.triplenegative.co.uk 

Also Peter's blog: http://petertrayhurn.blogspot.com.au/

Shower fun

Wednesday 19 February 2014

Where else would you get a choice of seven shower modes from Nebula to Caribbean Storm to Shower Fun other than the spa at the Zum Löwen which has become an integral part of my therapy and should be available to all on Medicare.
I tried each of them and love the aromatic mists but unexpected bursts of cold water are a bit too Bear Grylls for my liking so I retreated to the hot steam of the Dampfbad...
Today after my self administered spa treatment I had more localised hyperthermia with NDV and Zometa. It sure beats IV chemo – drifting away on a warm waterbed as the nurse tucks you in with a blanket and all but reads you a story. OK the needle in the arm for the infusions may break the spell but even that seems more tolerable than in a hospital environment.
And that may be part of it – the clinic system appears to be more personal (and obviously more personally expensive) and on a much more human scale. Their view is that it allows an efficient and speedier 'bench to bedside' approach to treatments – i.e. from research to patient doesn't have to take 10-15 years.
So does Biosceptre's nf-P2X₇ work – we won't know for a month or so yet but it feels like it – there that's jinxed it – swallowing has become perfectly normal just suddenly in the past few days, no longer having a fear of food getting 'stuck' or trying to wash it down with water. My appetite seems normal, though vegetarian options in Germany are not the greatest and the fatigue is definitely lessened. All I do know is it sure feels better than the vomiting, exhaustion and constant saliva stream of chemotherapy. (Though I'm not going to completely knock conventional treatments in case I have to return someday!)
When people stop offering me their seat on the tube or trying to help open a bottle of water for me at Heathrow (seriously the top was welded on!) I'll know I also look less like Cancerman – or maybe it's just an age thing?

Back for more

Sunday 16 February 2014

Back for round two as the church bells ring in the winter sunshine outside the fabulous Zum Lowen Hotel in Duderstadt – by which all hotels must now be judged.

To recap:

Diagnosed with stage 4 stomach/esophageal cancer last July and offered 'palliative' treatment in Australia – a round of radiation with chemo to shrink the tumour and stop the bleeding followed by a welcome break in which we busily got the house ready for sale (go on, ask me about real estate agents) then three rounds of non-stop chemotherapy with Xeloda over 60 odd days – by the middle of the third course my hands and feet were extremely 'ouchy' and shedding skin and I had all the energy of a 55 year old bloke who'd been on 60 non-stop days of chemotherapy.

So, thanks to the shared experience of Simon and Kate McRae and their discovery of Biosceptre's work and the brilliant Doctors Neßelhut I abandoned chemo and shuffled off to Duderstadt in Lower Saxony, Germany to embark on a course of immunotherapy with dendritic cells – particularly those primed to target a 'non-functioning' receptor 'nf-P2X₇' identified by Julian Barden at Biosceptre.

Put simply, all cells carry the P2X₇ receptor which tell the cell when and how to 'die' when its time is up. Cancer cells however have a non-functioning version of this receptor. Bioscepter have identified this and created a treatment which allows cells to reactivate the receptor and cause cancer cell death. Brilliant! and it appears this may well be a generic cancer treatment rather than being specific to a cancer type – to date Biosceptre have identified the marker on more than 20 cancer types. Even more brilliant!

Additionally, Dr Neßelhut and his wonderful team use a combination of approaches to help control and eradicate the cancer cells. These include localised hyperthermia (Oncotherm – also now available in Sydney) combined with Newcastle Disease Virus (NDV) (also not yet available in Sydney) our normal cells can pretty well shrug off NDV but cancer cells are weakened or killed by the virus.

They also add Ozone and Zometa treatments all of which have little if any side effects. To date I have had a slight cold which may be from the NDV or may well just be a slight cold.

Since coming off chemo and having fought to get hold of some Dexamethasone (which I have also since quit) my appetite has gone from zero to voracious and I've gained back some 4 kilos and counting – it's a strange world when you find yourself jealous of people's fat.

So this week the second treatment schedule looks like this:

Monday 9-10 Hyperthermia + NDV
Tuesday 9-9.30 Ozone therapy
Wednesday 1.00 Hyperthermia + NDV + Zometa
Thursday 8-9 Hyperthermia + Zometa
Thursday 1.30 DC Vaccine (nf-P2X₇₎
Friday 9-9.30 Ozone therapy

There will be a third course in a few weeks time followed by a CT scan to see what, if any, effect the treatment has had. Whatever the outcome I do believe my journey may help along the way in proving that immunology is a relevant and effective treatment for cancer and other diseases.

If anyone wants any other information feel free to get in touch.

Proton Therapy V Radiation

Delighted: Peter Kysel says he would recommend the treatment “without hesitation”

Ross Lydall, Health Editor

Published: 14 February 2014 

 Retired banker Peter Kysel had proton-beam therapy in the Czech capital to eradicate a tumour.

The treatment — the most advanced form of radiotherapy — will not be available in the UK until 2017 when £250 million proton-beam units are opened at UCLH in Bloomsbury and the Christie Hospital in Manchester.

Proton-beam therapy is unique in cancer treatment because it can be targeted at tumours without damaging surrounding organs — a particular benefit for prostate cancer patients, who risk being left impotent and incontinent after conventional treatment.

Mr Kysel, 69, from Maida Vale, believes he will be able to recoup some or all of the £17,000 cost by taking advantage of a European Union directive on cross-border healthcare, which came into effect in England last October. “I understand that within the EU they have passed legislation which gives us the right to be treated in any country of the EU,” he said.

“I’m going to test whether this works to see whether it’s political hot air, or whether the country is going to do what it signed up to do.”

Last August, he was told that his cancer had reached an “intermediate” stage and required treatment after three years of “active surveillance”.

The Royal Marsden in Chelsea offered him six months of hormone therapy, followed by two months of standard radiation. But he discovered that proton-beam therapy was available in Prague, where he was born, at far cheaper rates than in the US, where the NHS sends children with cancer. Last year, the NHS sent about 80 cancer patients abroad for treatment.

After initial treatment in Aachen, Germany, where three gold “grains” were fixed to his prostate to allow the proton beams to be targeted, he had 21 days of treatment at the Proton Therapy Centre in Prague.

“I had a completely active, normal life. I played golf, I played tennis, I went to the gym, I went swimming,” said Mr Kysel. “For the first two weeks there were no side effects. I was absolutely delighted with the treatment.”

Last month, he was told there was a 95 per cent chance the cancer would not return within five years. He said the cost of treatment was “stupidly low” and “astonishingly good value”.

“This is essentially 10 times less than patients would pay in the US,” he said. “I think the treatment I had been offered in the UK would have cost more than the treatment I had paid for abroad. I would recommend it without hesitation.”

Proton beam therapy can also be used on head, neck, eye and brain cancers as well as lung cancer, pancreatic and liver cancer, lymphoma and gastro-intestinal tumours. NHS rules state that patients can be treated in other EU countries “as long as the treatment is medically necessary and would be made available to you under the NHS”. Patients pay the bill but can reclaim costs “up to the amount the treatment would have cost under the NHS”.

A NHS England London spokeswoman confirmed claims could be made but that none had been received to date from patients in London.

Professor Manfred Herbst, health director of the Proton Therapy Centre, said: “We notice an increase in numbers from the UK, with patients like Peter having consulted doctors at home, but choosing to come to Prague because this treatment is not available to them on the NHS.

“While the NHS acknowledges the benefits of proton therapy and plans to build its own centres, many patients are given inferior treatments simply because the cost of sending patients to the US for this treatment – well over £100,000 - is too high.”

Lancaster

Monday 10th February 2014

In Lancaster with my mother, Angela, staying with my sister and husband, Nina and David, helping to renovate their new pad – well I say helping – I'm actually in charge of handing the brush and scissors to David and holding the ladder but it all helps!
Tiredness now wearing off and energy levels are much higher. Still have a slight cough but unsure if it's winter chill or effects of NDV.

Chemo side effects I think are still lingering with feet still peeling a little and fingertips still slightly numb - no sign of hair growth so assuming fast growing cells are still being affected by chemo/xeloda.

Drinking water seems to help immensely and in the past it was easy to get dehydrated so I am carrying a water bottle and aiming for 1.5-2liters a day.

London

Monday 3rd February

Fourth day after treatment and the 'mild flu' head cold and cough seems to be abating – it was very manageable and is hard to know whether it's caused by NDV or just winter weather having come from summer in Sydney.

Still tired but again it's difficult to know which part is down to the previous chemo treatments, jet lag from traveling or general illness and fitness!

No soreness from the DC vaccine injections under skin so effectively there are no side effects as far as I am concerned.

In London pictured here with my amazing brother Tom.