Treatments

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.

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!

The  treatment has also added 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

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

Round 5

Lunch at the Turk's Head in Wapping with Jack – lovely apple pie and heaps of ice cream, just the thing to help rebuild the soul and weight! I know sugar is supposed to be the enemy but I liked it!

Lost a little weight over the past week or so and felt a bit crook but you know what sometimes you just are a little unwell and it doesn't have to be anything to do with the 'cancer' – Jack was also under the weather (that's the London weather for you) but of course you are always over conscious of every small change.

Heard back from Proton radiation in Prague – they are not keen to simply reduce main tumour whilst there is metastasis – "Please allow me to answer your question briefly: It is indeed a good idea to kill the primary tumour first and leave the remaining metastases to be managed by dendritic cell, i.e. to be killed by immunity. Unfortunately this assumption does not work at all. There is absolutely no sense to irradiate a primary tumour if there are multiple metastases. Despite a good theoretical basis of working immunity "abscopal effect" of radiation and anything else, the practical and wide experience indicates a bad outcome if only the primary is managed.  Thus I would never recommend to do as you mention.  I strongly advise to follow the recommendations of your medical oncologist."

Confused – I am, but at least I explored that possibility.

Back to Duderstadt this weekend for treatment 5 – with Anti PD1 and amended NFP2x7 – then a few days in Berlin with Jack for fun.

Hopefully the new treatment will improve the swallowing – it does seem slightly better following last round - there jinxed it again!

Hope to be back in Sydney in a month or so – save some sunshine for us!

More than one way to skin a cat

It's here!

The scan report from 4 weeks ago shows some progression, mainly that the metastatic deposits that were there before chemo are present again. But no sign of disease in the other organs particularly the liver which is good news!

I have sent the report to Dr Nessulhut and will see what they think.

This was before the addition of Anti PD1 and Julian Barden's suggested change to the peptide configuration so I hope there may be improvement on this.

There are some other options too – Proton radiation could reduce the main tumour which would help give the DC less mass to combat and Radio Frequency Ablation on the lung deposits which has been blogged about by Triple Negative and by Peter Trayhurn both of who are intending to undergo that treatment. I'll discuss these in June with Dr Nessulhut.

The other minor issue is Dexamethasone – I'm stopping it all together as I don't think I need it and I read it weakens the immune system and should not be used with 'live vaccines' – DOH! Weaning slowly as it's not a good idea to suddenly stop.

Overall not entirely sure exactly where we are at the moment except to say it's 10 months on (which is the median survival time) and I'm definitely and defiantly still here! So go me! (oh and Dr Nessulhut and Biosceptre).

Patience

Five weeks on and still waiting on NHS CT scan results. After third GP appointment it has at least been requested to be faxed through so hopefully only a day or two more. The GPs have done everything they can but the hospital system here seems disconnected.

Dr Nessulhut has booked next treatment dates for 2nd and 3rd June but needs the results. Jack and I will spend some time in Berlin after as a treat!

Also Julian Barden at Biosceptre has suggested a slight change to the structure of the treatment – 'peptide-only priming – not just the conjugated peptide'. I don't pretend to remotely understand that but am sure Dr Nessulhut does!

Good news too from Kate MacRae who is back in Duderstadt for a top up treatment and is still all clear.

I'm noticeably more tired and swallowing symptoms remain but appetite and weight are constant – just need to see the scan report to understand whether metastasis have developed over the the past 3-4 months.

Meantime I'm waiting for the UK sun (summer's on a Wednesday this year apparently!)

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!

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.

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.