Tuesday 29 April 2014

Scan – the waiting's nearly over

So four weeks after the CT scan at Barts Hospital it's finally been looked at and I can now book a GP appointment to request a copy.

Dr Nessulhut is waiting on the results so hopefully they will be in time for the next treatment (June 2nd and 3rd).

Had another GP appointment last Friday and  endoscopy report was there but only had one line "There was a malignant looking mass the lower third of the oesophagus".

Still no sign of the blood test back in March but don't think it would be that relevant now.

Still the sun popped out today! Jack and I did Brick Lane and took off our winter coats for a bit!

Tuesday 22 April 2014

The Hanover – Part 4

After a few days in Lancaster helping decorate I'm back in Germany for round four. Stuck my head out at Hanover to explore but with luggage seemed a bit daunting so stopped for lunch in Göttingen – much more manageable. Then caught the 155 bus to Duderstadt – go me on a bus! It was a gentle one hour journey through the forests and villages of Lower Saxony – my own private coach tour.

So another quick recap below for those looking for information on the treatments to save reading through older posts:

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 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!

This fourth treatment will also add Anti PD1 - a seemingly effective treatment to help attack the main tumour.

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 1000mg x 2 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 to weigh in around 64kg.

So this week the fourth treatment schedule looks like this:

Wednesday 12-1 Hyperthermia + NDV + Zometa
Thursday 2-3 Hyperthermia + Zometa + Ozone
Thursday 2.30 DC Vaccine (nf-P2X7) Plus Anti PD1)

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

Wednesday 16 April 2014

Fetch the Oompa scope

After a lovely day out yesterday with my dear friend Sue enjoying spring sunshine and reminiscing in a proper country pub, today was 'endoscopy day' –  with just the throat spray. So when even the nurses take a sharp breath and say "ohh you're brave" you do begin to worry about it but honestly it ain't too bad (apart for the poor nursing team suffering my gagging noises).

Another faultless experience at The London Hospital and as expected the tumor is bigger, certainly by sight – almost completely closed over in the middle so no wonder it's a bit tough to eat. Also when the Dr says "do we have a pediatric scope" you know the gap is limited or I really am an Oompa as some people believe! Still we'll see better on the CT scan in a week or two and hopefully the Anti-PD1 may also help reduce it.

There's also still the question of DC activity enlarging the mass. They showed me the camera images and it was surprisingly 'clean', like swollen skin compared to the 'fungating mass' so delicately described by the first scope way back in July 2013. Not sure if it means anything and endoscopy doc didn't seem to consider it particularly relevant so I will live in ignorant happiness for now, like the Oompa Loompa doom-pa-dee-do.

Monday 14 April 2014

Men in white suits

Having spent a few days in Lancaster with Jack helping decorate (Bodgeit & Scarper style) I had my first CT Scan today at Barts in London.
Unsurprisingly similar to scans in Sydney though with plain water rather than the yellow liquid there and the canula is put in prior to going in so saves the radiologists time. The whole process was bang on time and efficient so another positive for the NHS. Results will be with my GP in about a week so I will wait till I get back from fourth treatment in Duderstadt for those and the first blood test. The endoscopy (on wed) results will also presumably be there by then too.

Weight is constant and feeling fine still apart from dysphagia and hoping the Anti-PD1 will help with that. There is also an option to help relieve some of those symptoms using Photodynamic Therapy. PDT uses laser, or UV, combined with a light-sensitive drug to destroy cancer cells. it's effective in reducing (but not eliminating) esophageal tumors since the light source can be used via endoscopy. The treatment is available at the Yorkshire Laser Centre.

Back up in Lancaster later this week to continue my dodgy paintwork without Jack who's headed to a cool jazz camp in Italy. Course I could always take up guitar!

Friday 4 April 2014

Treading water

Enjoying the London grey with Jack while I wait for fourth DC treatment in Duderstadt and a CT Scan which is booked for the 14th April at Barts in London. Nice one NHS it's perfect timing in regards to treatment, 3-4 weeks after the third one so we can gauge the effects, if any.
No reports from the blood test two weeks ago at Whitechapel and not sure if I am supposed to call or assume no news is good news. I guess though I should make that phone call – that's the thing when you leave the 'system' it really is up to you to follow up and organise your own treatments.

The swallowing is still an issue and that is a concern – I am glad Dr Nessulhut has recommended adding Anti-PD1 to the next DC treatment and have found more content about it here and a news article in the NY Times. It does seem that it is getting extremely good results in clinical trials and hopefully along with Biosceptre's cell therapy we can manage the tumour.

Otherwise feeling like a normal old geezer and managing to hold weight and even gain a little at around 64kg. Was considering joining a gym and bulking up but have settled for just getting fat on gellato.