25 million little cells

DC vaccine is in – the numbers and quality were great apparently – 25 million cells – and enough harvested and frozen for 15 more treatments if needed. the clinic is fantastic with some lovely personal touches like participating in an online questionnaire on how treatment affected you over the past week and actively involving you in the process of the vaccine.

Dr Nesselhut (all of them) and team seem to have all the time in the world to explain the process. It may be the sheer scale of clinic v hospital and closeness of "bench to bedside" that makes the difference.

They also show you the visual 'control' of the cells before and after and wow it's certainly spectacular – now it's up to my body to see if it works!

On a last note – proof the German's do have a sense of humour –  after putting a cannula needle in for later use the nurse said you can bend the arm but don't play any tennis this afternoon!

Komödie gold.

Cat in the Rat

Thursday 30 January 2014

Last treatment day of round 1 – another Oncotherm hyperthermia treatment plus Ozone.

The NDV definitely kicked in with coughs and splutters but it's just like a small head cold so no biggy – certainly nothing like chemo side effects!!

Treated myself to a full cream Gorgonzola tagliatelle experience at the Ratskeller - appetite is back with a vengeance and that's without the Dexamethasone now – That was a life saver when my appetite had vanished and I would recommend anyone to push hard to be given it – not sure why it wouldn't just be routinely prescribed for cancer anorexia.

Off now for the big one – first DC vaccination with NX-P2x7. Then flying to London in the morning.

Oncothermia NOW at POW in Sydney

http://oncothermiaclinic.com.au/

Oncotherm's Australia website is about to go live! – the localised hypertheria that Michael Jackson got going with the tireless Jenny Barlow is about to go public at the Prince of Wales Hospital in Randwick, NSW Australia.

It’s the same as I’m having here but won’t offer NDV initially I doubt (till we‘ve worked on them!) but will be of benefit in supporting chemo/radiation therapies and from a patients point of view is a positive step in the right direction toward immunotherapy being incorporated within the available treatments at POW. – their site will go live next week –  it won’t be on Medicare or health fund cover but hopefully wouldn’t be very expensive per session.

They have already done over 350 treatments in the last 12 months and have operated on a wide range of cancers, the highest percentage is brain cancer. If you want more information get in touch via email on - info@oncothermiaclinic.com.au (to direct each patient to a Physician to be screened and discuss treatment options).

http://oncothermiaclinic.com.au/

Oncotherm NDV Zomita - 'happy crappy"

Tuesday 28 January 2014

One sick cat...

Second hyperthernia treatment with Newcstle Disease Virus and Zomita to help T cells increase.

Finally got a cough - first in many, many years I can remember in Aussie sunshine but I think that's the point of the NDV so kinda 'happy crappy' I guess you'd say!

Assume the NDV is kicking in and any affected tumour cells won't survive that. Go my little Geordie pigeon germ beauties!

I may not look happy but it's really relaxing – it's a water bed so I'm just drifting! and you feel nothing from the hyperthermia thingy.

Another Midi of Ozone thanks

Monday 27th January

Ozone again this morning – just half hour – easy. No real side effects from first NDV/Oncotherm last Friday. Still jet lagged a bit – or could still be chemo/cancer or probably just plain old age!

The schedule below shows the first seven days of treatment ending on Thursday with the DC vacine.

I get to go to London on Friday and will be back in Duderstardt on the 17th

Have met another great lady here who has undergone successful treatment for brain tumor so it's a positive result. There is also a new patient apparently who may be coming late to treatment and that's a shame that may be conventional oncology prefers to exhaust all options before patients explore alternatives – it would make sense to run both in tandem otherwise the danger is therapies like DC don't get the opportunity to be proven early and are left to battle late stage illness.

Gene therapy cures leukaemia in eight days

http://www.newscientist.com

Slightly off my own treatment but it demonstrates the potential of immunology. Bioceptre's approach is similar but they have identified a generic marker which can be found on many cancer cells which would make it a suitable treatment for multiple cancer types.

http://www.newscientist.com/article/mg21729104.100-gene-therapy-cures-leukaemia-in-eight-days.html#.UuVHYvY1h0s

WITHIN just eight days of starting a novel gene therapy, David Aponte's "incurable" leukaemia had vanished. For four other patients, the same happened within eight weeks, although one later died from a blood clot unrelated to the treatment, and another after relapsing.

The cured trio, who were all previously diagnosed with usually fatal relapses of acute lymphoblastic leukaemia, have now been in remission for between 5 months and 2 years. Michel Sadelain of the Memorial Sloan-Kettering Cancer Center in New York, co-leader of the group that designed the trial, says that a second trial of 50 patients is being readied, and the team is looking into using the technique to treat other cancers.

The key to the new therapy is identifying a molecule unique to the surface of cancer cells, then genetically engineering a patient's immune cells to attack it.

In acute lymphoblastic leukaemia, immune cells called B-cells become malignant. The team were able to target a surface molecule known as CD19 that is only present on B-cells. Doctors extracted other immune cells called T-cells from the patients. These were treated with a harmless virus, which installed a new gene redirecting them to attack all cells bearing CD19. When the engineered T-cells were reinfused into the patients, they rapidly killed all B-cells, cancerous or otherwise.

"The stunning finding was that in all five patients, tumours were undetectable after the treatment," says Sadelain.

He reckons that the body should replenish the immune system with regular T-cells and healthy B-cells after a couple of months. However, the patients received donated bone marrow to ensure they could regrow a healthy immune system (Science Translational Medicine, doi.org/kwz).

The treatment is not the first to re-engineer T-cells to attack a form of leukaemia. Last year, an international company called Adaptimmune used the approach to treat 13 people with multiple myeloma – it left 10 in remission.

"Although it's early days for these trials, the approach of modifying a patient's T-cells to attack their cancer is looking increasingly like one that will, in time, have a place alongside more traditional treatments," says Paul Moss of Cancer Research UK.

Sadelain's team is now investigating the scope for attacking other cancers. Where no single surface molecule is unique to a cancer, he is seeking to target pairs of molecules that only occur together on cancer cells. In January, he demonstrated this approach by wiping out human prostate tumours implanted in mice, using T-cells engineered to target two surface molecules (Nature Biotechnology, doi.org/kw2).

Cat with added Bird Flu

Newcastle Disease Virus and Oncothermia

Today was the first of three hyperthermia with Newcastle Disease Virus treatments.

This is over and above the new Biosceptre.com cell therapy I came here for but it is one (actually two) I have been interested in.

Hyperthermia alone as a principal makes sense and has a long history. Ancient Greeks, Romans, and Egyptians used heat to treat breast masses and noted that fever cured disease.

The POW is also trialling Oncotherm thanks to the efforts of Jenny Barlow – I hope it's the beginning of introducing a fourth discipline of immunotherapy to the hospital along with the conventional. http://www.oncothermiaclinic.com.au/

The principal idea is that cancer cells cannot tolerate heat as well as normal cells and heating the body to a controlled fever temperature can destroy tumour cells. It seems to help too in conjunction with other treatments (radiation/chemo) in weakening the cells and increasing the effects of those treatments.

The other introduction is Newcastle Disease Virus. Interest in the use of NDV as an anticancer agent has arisen from the ability of NDV to selectively kill human tumour cells with limited toxicity to normal cells. Essentially humans can cope easily with the disease but cancer cells cannot and so introducing it deliberately attacks the tumour cells and coupled with local hyperthermia we hope to reduce their numbers.

I also came across a blog by Ren who has been on a similar journey surviving one year, having been given 2 months and who documented his treatments in a far more lucid and literate manner than I am able to do and I hope he and his family don't mind me sharing his work...

http://www.mcrc4.com

Ozone

Thursday 23 January 2014

Ozone treatment

This is a little outside of what I had researched previously and there's conflicting evidence for its use but as George Clooney says of shooting Gravity – "I just put myself in the hands of the smartest guys in the room" and go with their recommendations.

It takes just 10 minutes – they take a small amount of blood in a bottle – mix in Ozone and put it back in your arm... Painless and quick – that's it for today.

Ren explains it: http://www.mcrc4.com/?p=4579

Lleukapheresis – harvesting monocytes

 Wednesday 22 January 2014

The first part of the DC treatment involves harvesting blood monocytes but with the recent chemo there was concern my levels may not be high enough to collect. The blood test was a good result – pic below of numbers – and they set about the collection of monocytes which I understand will be enough for all the treatments, saving the seven days of priming the cells each time. I will head to London in between the time in Germany – the first round will be done by the end of January and the next treatment starts on the 17th Feb till the 21st. So efficient they have already organised the schedules.

The practise website helps explain the process of harvesting.

http://www.immune-therapy.net/en/spektrum/dc-therapie.php 

My selfie montage – In one arm, out the other! 

First appointment

Tuesday 21st January 2014

I have a 3.30 appointment for a blood test and consultation with Dr Thomas Neßelhut – it's an easy stroll across the cobblestones to the clinic one street away. Duderstadt is slow and you quickly learn to join in its pace. There are very few cars and those that do venture in drive at walking pace.

The clinic's doors face straight to the street with a beautiful brass hand grasping the handle. Inside the place is warm, bright and welcoming with various languages being spoken from broken English to Portuguese, I think.

I'm given three treatment outlines to read and sign – explaining Dendritic Cell therapy with Julian's antibodies, Newcastle Disease Virus and Hyperthermia with associated risks and an understanding that nothing is guaranteed – I get that.

The blood test is painless and quick and then I meet Dr Thomas. As Mo says he has a touch of Father Christmas about him, he's 69 but looks younger than me and is certainly fitter. He has use DC therapy on himself to treat heart and arteries and is as enthusiastic as I am about the future of immunotherapy.

He has success in treatments as diverse as Parkinson's, Alzheimers as well as pancreatic and other cancers and whilst Julian is aiming for a 100% success rate Dr Thomas believes even with less than 100% clearance of tumor cells the disease may be manageable with six month or yearly treatments.

He explains the processes and we agree to the three main elements – DC, NDV and Hypothermia along with supplementary Ozone, Vitamin D3 plus Metaformin to control sugars and Cimetidin to control stomach acid (rather than using proton pump inhibitors).

I'll go through the detail of each treatment as I have it.

Duderstadt – Day 1

Having arrived late on Sunday evening after an easy flight (Ethihad) and great train journey (proper trains with restaurant and service like it was 1965 - gobsmaked by Germany already) I had Monday to recover and enjoy the Hotel Zum Lowen – seriously this is the most beautiful space I have ever stayed in (and I've stayed in the Nunawading Motor Inn you know).

I imagine it's a lot like living in Sting's house – full of personal, exquisite, individual style and a subterranean spa with salt rooms, saunas, ice and pools – this already feels like an important part of the therapy in Germany itself and you wonder why it's not possible to offer it in hospitals – I know it's a luxury but hey could we just keep a bit back from the new building cost at POW for some alternative therapies? It could make life so much more bearable for patients and staff.

Biosceptre immunotherapy

Thanks to Simon MacRae and to Julian Barden at Biosceptre we have been given the opportunity to trail a new cell therapy treatment in Duderstadt, Germany.

Essentially, in my simplistic understanding, Julian has identified a generic cell marker that in a normal functioning cell tells it when it's time to die (apoptosis) then lets our immune system mop it up making space for new healthy cells to grow. 

Cancer cells put up a 'non-functioning' version of the marker which is not recognised by our immune system and so those cells live forever, multiplying and taking over the tissue space we need to live.

Julian and his team have developed antibodies that interact with the non-functioning markers in a way that re-activates apoptosis and a method of cell therapy that boosts our t-cells to take out the  cancer cells.

Biosceptre believes this technology has the potential to clear many forms of cancer.

http://www.biosceptre.com

I'll try and detail the actual treatment and other therapies offered here as we go and update on any progress.

We are obviously at the beginning of this journey and no one knows the outcome but if it is of interest or helps others along the way it's worth the effort.

Conventional v 'alternative' treatments – cats and dogs.

Over the past six months of treatment at the POW for Stage 4 oesophogeal/stomach cancer with metastasis – radiation to treat the worst symptoms of the initial tumor (bleeding and difficulty swallowing) and more recently 3 x 21 day rounds of Chemo (Cisplatin with 1000mg Xeloda 2 x daily) we think we have seen a small improvement in the metastasis in the lungs (now clear) and peritoneum. We got the latest scan just before leaving fro Genmany and I have attached it below.

So is it a big decision to stop the chemo if it appears to be having some effect. Certainly Dr Goldstein thinks so and he has a valid point that this treatment is unproven. There seems to be a view that until options run out it's better to stick with conventional trialled proven treatments. Then when chemo fails (and it will) move on to any last hope.

It seems to me that in my case chemo may just buy a few more months of debilitating tiredness and other side effects and I would be unlikely to get another chance at Julian's therapy. I'm fortunate that we can afford the time and cost to go down this path and fortunate too that I have the support of Laurel and the family.

"So this therapy has been tested on 8 cats" Dr Goldstein pointed out - where are the 1000's of human trials results? There aren't any Laurel pointed out, it's a trial. And so I take the role of the ninth cat!

Ultimately I guess being in London or Sydney further chemo may still be an option later but in the meantime we're going to give this a red hot go.

In the words of Mo and Kenn – "It's not the size of the dog in the fight but the size of the fight in the dog"

Chitty Chitty Bang Bang

Duderstadt, Germany in southern lower Saxony Population 22,114 plus one cat!

Arrived in Duderstadt yesterday – a magical, serene town, a straight out copy of the Vulgarian set of Chitty Chitty Bang Bang (with a disturbing absence of children!) – Bagsy I get to play the Baron in any remake with the lovely Anna Quayle – other than classic James Bond and Beatles movies her obvious career highlight was playing Mrs Monroe in Grange Hill with me, discretely slipping off her shoes in our scenes to lower herself to my stunted, short-arsed Mr B.

Another great movie “The View from Greenhaven” is the reason I’m here – written and directed by Simon and Kenn Macrae. Simon and his wonderful wife Kate and family have just finished six months of Kate's treatment http://date4kate.com at the immune threpy clinic in Duderstadt http://www.immune-therapy.net/ under Dr. Thomas Neßelhut treating cancer with cell therapies.

So it's cancer then

In June 2013 I was dieting on my crazy pills (CLA) and drinking Honey Lemon Black Strap Molasses, losing weight, feeling great, thinking this is easy… Had a little bit of difficulty swallowing food like pizza so googled it and put it down to an ulcer caused by H Pylori (simple GP breath test confirmed presence of the little buggers so treated it with antibiotics). Brilliant story of two Aussie scientists "Bazza and Robby" who proved H Pylori is the cause of ulcers – not stress or diet – Barry swallowed the bacteria – he got ulcers and the Nobel Prize. http://discovermagazine.com/2010/mar/07-dr-drank-broth-gave-ulcer-solved-medical-mystery

My ‘ulcers’ seemed to be bit better but not completely fixed so I went back to the GP to get another test – still positive for H Pylori but also a bit anaemic Dr Nguyen in Glebe sent me over to Robert Kim at the Centre for Digestive diseases in Five Dock. Robert held my hands out straight, talked to me about the brilliant work they do there with poo transplants (seriously) and sent me off for blood and CAT scans.

The next day I went for the CT scan – lying there the radiologist casually asked if I had had a scan before. No I hadn’t but it seemed a loaded question as they set about taking a few more scans. I did see an image out of the corner of my eye of what seemed to be an alien in my stomach but hey that’s what they may be supposed to look like.

Half hour later I was waiting in reception for the films when a nervous radiologist started talking urgently about seeing the GP today but that they would fax through the results rather than give them to me. It seemed amusing to be amongst waiting patients with someone trying desperately to shield me from the obvious discovery they had made – I found myself trying to calm her down and left to see if I could get to see Dr Nguyen.

Driving back, she called me wondering if I could come in that afternoon and bring someone with me… This was clearly cancer then (the only other ‘unlikely’ google result that kept popping up!). It wasn’t particularly a shock and I didn’t want to make a big deal of it so I said no I can’t bring anyone and I’m old enough and fat enough to figure out it’s serious. Having got an 'appointment' to see her after lunch - I went to the pub with Austin and we talked about the probability of cancer – no dramas just a realistic chat over a beer though I could no longer manage more than one slow beer – that had been a sure sign of something being wrong for a while!

Dr Ngygen was calm but concerned – we both were – "It’s obviously cancer" I said but had no real understanding of progression or what happens next. She kept saying how brave I was but brave is leaping into a burning building to save a small child – I just wanted to understand what to do next and how long I had to sort out the practical stuff. I think it was the first time I had heard the term ‘palliative’ - a word I hate as much as I dislike the word 'comfortable’ – but she said the treatment was debilitaleting so pretty much pack your bags was the advice I took from it.

She set about organising an appointment with The Prince of Wales in Randwick and gave me the number to call. I walked around the corner and made a cali in the sunshine outside the housing commission in Glebe Street. The next available was about month away – I mentioned it was kind of urgent and they organised for me to see the POW surgeon Prof Truskett the next day.

Back at the studio I tried to finish a job, to keep a normal perspective whilst taking it in – I think it was a Scott’s label but in between googling how long to live (first result was four weeks – happy days!) I managed to convince myself to go home early.

Laurel was naturally surprised when I walked in to the bedroom – I never came home early!

We are both practical people not prone to breaking down in a jelly mess and I think I simply said It’s cancer and it’s terminal. Laurel always thought I was the one with all the immunity in our family, never been to hospital or had a day off sick but as Glenn Hazeldine says "boy do the Ray’s do it big time when they do get sick".

Having agreed to wait til after POW appointment before discussing with Jack and Lizzie we set off the next day to meet the affable Prof Truskett. He was surprisingly gung-ho – looked at the scans and announced he could cut it all out along with the nodes – suddenly the outlook changed and I may live! – It seemed reasonable that the radiologist may have made a bigger call and surgery was an option. Depends on the PET scan and biopsy etc he said but for a moment we had hope.