Whitechapel

Refreshing to meet the open-minded and understanding gastroenterologist consultant, Dr Sean Preston at The London Hospital this morning – having run through my history to date with both Lisa, an intern, and him he has arranged a non-urgent CT scan plus a non-urgent endoscopy (booked for the 17th April). He also ordered a blood test today – I did find it a little odd that we don't routinely take blood tests each time at Dr Nessulhut's – I will ask if that is normal at next treatment in Duderstadt.

His use of the words "non-urgent" created a sense of calm following my niggling worries about the dysphagia (which may of course still be a concern).

He discussed options for the future including a stent to open the esophagus if it got too bad (hopefully not!) and also drinking carbonated drinks when eating which I hadn't heard before (does a beer count?) plus further chemo and palliative care if and when I wanted it.

I'll also add on first impression The London Hospital seems a great deal better than any NHS expectations based on media hearsay – obviously a lot of the modern physical rebuilding going on helps but Jack and I were extremely early and expected a long wait – we were seen within minutes and everyone involved couldn't have been more helpful – hey and where else could you get Hot Roast Salmon with Quinoa and Oven Roasted Cherry Tomatoes in a hospital canteen?

Nine months on

Organic broccoli lemon soup in the sun with Jack outside Lebenskunst in Duderstadt must be doing us good – mustn't it – surely! Well, we explored and experimented and it tasted healthy! Then we had sorbet and ice cream.

Had third treatments and saw Dr Thomas Nessulhut yesterday for DC injections with 12 million cells – half IV and half subcutaneous. Mentioned the dysphagia/swallowing symptom and he seemed a little concerned so he has suggested adding Anti-PD-1 antibody to the treatment next round in four weeks time.

My simple understanding is that the Anti-PD-1 antibody is useful in boosting immune responses and enhancing t-cell activity with a particular intent to reduce tumour size. PD-1 is a protein found on the surface of T-cells (immune system cells) in our bodies; this protein binds with protein PD-L1 that is expressed in cancer cells, and together they protect the cancer cell from attack by our own immune system. Anti PD-1 antibody blocks that action and allows normal t-cell attack.

Dr Thomas has also increased my dose of Metformin to 2 x 1000mg per day.

Back in London and have an NHS appointment on Monday so will begin to get a fresh perspective on where we are. I have faith in the approach we've taken but I know this is not a simple process and the conventional opinion next week will be both interesting and possibly challenging I imagine – we'll keep an open mind.

Another small point is blood tests and scans seem to be something I need to organise which is fine – I think it reminds you that you have actually taken control of your treatment rather than simply turning up to oncology appointments when booked and following that particular defined path of 'palliative' treatment. Trying not being negative about that but it's a treatment that has been proven to, well be fairly negative in the old survival stakes...

Round Three Recap

Back for round three, this time with Jack, my son, for company. We have explored Duderstadt and discovered more than I found in the past two trips put together!

Time again for a quick recap for those that have just tuned in:

Diagnosed with stage 4 stomach/esophageal cancer in July 2013 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 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 have been be a slight cold.

Other prescribed medications are:
Metformin 500mg x 3 times per day
Cimetidin 400mg 2 x per day
Q-10 x 2 cap 
Vitamin D3 x 5 drops
Coriolus Mushroom x 2 capsues twice per day

Since coming off chemo and having fought to get hold of some Dexamethasone my appetite went from zero to voracious and I 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 third treatment schedule looks like this:

Tuesday 12-1 Hyperthermia + Ozone therapy
Wednesday 12-1.00 Hyperthermia + NDV + Zometa
Thursday 12-1.00 Hyperthermia + Zometa
Thursday 3.00 DC Vaccine (nf-P2X₇₎

This will be followed by a CT scan in about 3 weeks time to see what, if any, effect the treatment has had. I still have to confirm where the scan will take place but it is likely that I will have an appointment with the NHS in London when we get back. The lovely GP in Wapping (who was refreshingly open to both conventional and DC therapy as legitimate) has requested an NHS appointment for me. It will be interesting to compare the approaches and treatment plans.

Right now I feel 'normal' – apart from a little swallowing discomfort at the beginning of eating which is a concern as it could represent tumour growth given the eight weeks off chemo – and people have stopped offering me their seats on tubes so happy with that!

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.

Punk Rave

Spent a wonderful day with my son, Jack Ray, up at Camden Lock in the spring sunshine. Based on fabulous clothing stores have decided I may add a visit to a punk rave to my bucket list (should I ever need one). Almost bought a trilby to add to the London geezer look but bottled it. 

Amazed at how little London has changed in 15 years. Tubes seem better (but not today) but otherwise little's altered – I swear there are shops up Watney Market with the same stuff on the shelves unsold for 20 years and, hey if you hanker after an "International Grill" there's a Wimpy bar still plating them up.

Off to Duderstadt with Jack tomorrow for third DC treatment. I began to get a little concerned at swallowing symptom as my appetite has been dropping away over last couple of days – maybe I'm just not hungry but every change becomes magnified so I took 4mg pill of Dexamethsone yesterday and today which has already helped with swallowing and appetite as well as energy (may be placebo?) – it's not a great idea long term and I don't want to mask symptoms but a great little kick start – so long as I don't get a sudden urge for an International Grill!

Park life

Thursday 6th March 2014

Not much to update other than spent a lovely day over in Teddington with fab food and a great gang with a very cold stroll through the deer park.

Swallowing (dysphagia) symptom still apparent but only a CT scan will show if this is tumour growth. The next planned CT is in about a months time after third and final planned treatment so will have to arrange one in London prior to that. Little hard to convince the NHS that I just want a free CT scan please and then I'm on my merry way to Germany... oh and could I also get another one in a month, thanks everso! So will ask GP advice. Appetite and weight are still good so not quite as concerned as I would be if they were affected.

Also just read Triple Negative's great blog http://www.triplenegative.co.uk/blog/post/2012/12/11/Move-onto-the-next-chapter-and-hope-the-little-cells-get-with-the-program-a-little-quicker-please!.aspx

More importantly further on it explains that the dendritic cell activity itself can enlarge tumours and show as growth on scans. I'll buy that one then please!

 "Dr Nesselhut also confirmed that he has a friend with a brain tumour who had been having vaccinations. One month his tumour appeared to have grown a lot as the CT scan stated. So he had surgery to remove it and the histology of the tumour actually showed that most of the mass of the tumour was in fact dendritic cells and not cancerous ones."