Monday, 13 October 2014

Hi everyone, for those who can't make the service on Wednesday the details for streaming are as follows
Ceremony:
Adam Ray
Ceremony Date:
15/10/2014 2:30:00 PM AEST
Ceremony Passcode:
183323A
To view the service visit http://video.esmp.net.au
Video streaming becomes active 5 minutes before the start time above, and for 60 minutes after the start time. Attendees must log in during this period to connect to the service

Sunday, 12 October 2014

The End



To all friends of Adam Ray:
Adam died at around 7.15 am yesterday, Sunday 12th, peacefully in hospital. He exhausted all medical options on September 26th and opted for hospice care from then on. A funeral will be held at 2.30 AEST on Wednesday 15th at the South Chapel, Eastern Suburbs Memorial Park, 12 Military Road, Matraville. For those unable to attend there will be a live webcast of the service, the link for which I will publish here as soon as I get it.
Laurel McGowan

Wednesday, 1 October 2014

Wow Wolper



Wow Wolper hospital is superb.
Facilities and staff like a small hotel.
Able to sit outside and share spaces and family allowed access all areas
Jack's working on songs and Laurel's here as a pillar as ever.
Friendly staff can't do enough even offering G&Ts!
Will try and recover strength a little and aim for a plunge in the pool
It's not the zum lowen but not far off!
Will post as days go by...

Sunday, 28 September 2014

Moving on

A perfect Sydney day 28 degrees
Enjoying warmth and possibility of moving to Wolper on Wed to spend some BUPA dollars!
Had shower today and walked assisted to toilet
All small stuff but a deal to me
Laurel and family support immeasurable
Love to all here and in UK

Thursday, 25 September 2014

Hooray for Pete

http://petertrayhurn.blogspot.com.au/

Peter Trayhurn has manged to become all clear which is a remarkable achievement.

I'm still in St Vincents being cared for by Laurel and family. Laurel bought in photo albums – oh how time slips away – Family so important and I dearly love those precious moments we have had.

Had a PICC line put in today – simple and very little pain and will save more needles!

Blood red cell count low so 1 bag of blood overnight then an endoscope tomorrow with probable stent. I've argued it won't boost appetite but hopefully it can't hurt!

Peg tube is ruled out.

I look like I could do with a wash and brush up!

Tuesday, 23 September 2014

Banjo boy

Thanks to Laurel's unending patience spending hours in uncomfortable chairs and multiple visiting 'team' members we seem a little closer to resolving feeding tube. Finally GI surgery team are involved and it seems a peg tube is the go.

Still very weak from lack of eating but bowels seem to have cleared somewhat.

Jack's got together with some other hip musos and formed an early jazzy dixie group - he bought a banjo so that should be fun!

Lizzie mid HSC so all go....

Reflux is main issue but seems ok tonight - hope that doesn't jinx it!

All a long way from Duderstadt but hopefully on the right  track.






Friday, 19 September 2014

Nasal update

The nasal feeding is unbearable with vomiting on each movement so I asked Prof Epstein to look into it.

They were talking of looking at adjusting position at xray but honestly it's been a day and no benefit so I mentioned to Rob the nurse here that I was going to ask for it to be removed.

In seconds he'd pulled it out and I'm a free man! Awesome! We'll both probably get into trouble but hey it's my choice.

Waiting next then on Jejunostomy.


Thursday, 18 September 2014

Water, water



Lizzie's year 12 graduation evening and I'm back in St Vincent's.

Dehydration has gotten the better of me again. The 'chemorrhea' still continues so along with nutrition we are looking to improve both.

Tumour markers for CEA in blood test has dramatically improved so the chemo is working – just need to get a bit stronger to push on.

CAT scan results show good reductions in metastases so everyone positive. Luckily they didn't scan brain as I'm watching back to back Masterchef so assumed it spread there!

One result shows blood clots on lungs which could explain lethargy so injections to remove those will start today.

Also enjoying doing a quick job for the studio.

So in over the weekend rehydrating and being fed through nasal tube (whoever invented that is evil!) until we hook up Jejunostomy feeding tube next week.

Hope this gets me up and about. Only 10 weeks ago I was swimming in the gym!

 ________________________________________________________

On my past Duderstadt Dendritic Cell treatment for those interested:

Not sure how much it has benefited me or how much of the four or five months of strength was due to coming off chemo but I have no regrets regarding the decision and am glad and hopeful we may have been a small part of developing this immunotherapy.

Interesting note From Claire's blog 'As Prof proudly said to Claire, "You are officially my longest surviving non chemo patient"'

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.
 

Tuesday, 9 September 2014

Fathers Day

Father's Day on Sunday. Annual Toblerone and scratchies treat!

Extremely dehydrated and struggling with energy. Believe chemo diarrhea to blame so called district nurse who agreed i needed rehydration.

Called ambulance and spent night in ER at St Vincents – plenty of bags of liquid and drinking water.

Moved to freezing cold room next day, listening to people 'ahead' of you in disease is a little disturbing with families being told of their imminent demise – next time I must remember to use the BUPA card!

Still no real appetite. Weight at 54kg but that allows for extra liquid.

Stopped chemo for now and have appointment to discuss next steps on Monday.

 ________________________________________________________

On my past Duderstadt Dendritic Cell treatment for those interested:

Not sure how much it has benefited me or how much of the four or five months of strength was due to coming off chemo but I have no regrets regarding the decision and am glad and hopeful we may have been a small part of developing this immunotherapy.

Interesting note From Claire's blog 'As Prof proudly said to Claire, "You are officially my longest surviving non chemo patient"'

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.



Tuesday, 2 September 2014

Week 2, 3rd Chemo

A visit to Sacred Heart to see Prof Chye. Big thanks to Laurel, Jack and Lizzie for getting me there in one piece!

My legs are pretty weak – not good for getting up after my unsteady comedy slip into the bushes in front garden but ok for walking.

Not much to report but Chye is going to prescribe Megace for appetite to replace Dexamethsone. They are currently trialing Megace v Dex at Scared Heart but I'll not be on the trial so at least I know its not a placebo.

Still tired but enjoyed a few sunrays in the garden yesterday.
____________

On my past Duderstadt Dendritic Cell treatment for those interested:

Not sure how much it has benefited me or how much of the four or five months of strength was due to coming off chemo but I have no regrets regarding the decision and am glad and hopeful we may have been a small part of developing this immunotherapy.

Interesting note From Claire's blog 'As Prof proudly said to Claire, "You are officially my longest surviving non chemo patient"'

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.

Thursday, 28 August 2014

Pin cushion

Chemo at the Kinghorn took all day Tuesday with one unit of blood and some hydration – took a couple of hours to cannulate as my veins are so small from dehydration and weight loss so I became a bit of a pin cushion!

Weight is an issue - down to 52kg so lost 6kg in 3 weeks – some of that I think is hydration but appetite is the main concern.

Very tired and unsteady after treatment and had to be helped to the car by the kind Dr Alex, nurse and Dr Manders – Jack drove me home and I have been recovering since.

Today (Thursday) seems better – relatively! – eating something at least and sat in garden for a little while – I love the sun and the quiet... til I slipped off the chair by reclining a bit too energetically – doh! Managed to pick myself up though Mr Bean style... should have shot it!

Appointments to see Alex tomorrow to see how I'm doing and discuss a port line with care coordinators for future chemo etc to save the cannula issues. Also we are considering another feeding tube to help nutrition – watch this space!

Also following up on the Mebendazole tablets that Claire has been taking whilst Peter has been taking Albendazole (thanks J) – always interesting that common treatments have added benefits.

____________

On my past Duderstadt Dendritic Cell treatment for those interested:

Not sure how much it has benefited me or how much of the four or five months of strength was due to coming off chemo but I have no regrets regarding the decision and am glad and hopeful we may have been a small part of developing this immunotherapy.

Interesting note From Claire's blog 'As Prof proudly said to Claire, "You are officially my longest surviving non chemo patient"'

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.



Monday, 25 August 2014

Chemo round 3

A beautiful sunny Sydney day, a day of Jack chauffeuring both Laurel and me around St Vincent's with Lizzie helping at home after school – we knew there was a reason for having kids!

Laurel had an operation on her hand, I had blood test and review with Dr Manders at the Kinghorn.

Same issues continue, extreme fatigue and zero appetite – the community team clarified some of the order of medicine and dosages so hopefully that may improve things a bit.

Dr Manders suggested getting outdoors more, especially getting Vit D – so sat in the garden and enjoyed the simple warmth of sun rays and sounds of human and wildlife endeavours – also found the original stone wall at the back of the garden, may be going a bit hippie here (is that the drugs kicking in?) – even tried a youtube hypnosis video to increase appetite – actually quite relaxing if nothing else…

So chemo round 3 begins tomorrow with a scan in a week or two to assess how we are going.

Hopefully at some point I can get back to some kind of normality and meet up with 'normal' people!

FYI
Medication I am now on:
Targin for back pain (10mg 1x daily)
Dexmethasone (2mg 1 x daily) for appetite and nausea
Nexium (20mg 2 x daily) acid reductioon
Pramin (3 x 10mg daily) for appetite and nausea
Allopurinol (1 x daily) a gout medication that cleans up left over debris following chemo
then Mirtazepine (1 x 15g in the evening) as a side effect it boosts appetite and also helps sleep and is an antidepressant to boot so it seems a great choice.

On my past Duderstadt DC treatment:

Not sure how much it has benefited me or how much of the four or five months of strength was due to coming off chemo but I have no regrets regarding the decision and am glad and hopeful we may have been a small part of developing this immunotherapy.

Interesting note From Claire's blog 'As Prof proudly said to Claire, "You are officially my longest surviving non chemo patient"'

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.

Wednesday, 13 August 2014

43 years on

A quick visit from a dear friend Ann from Perth who I have known for 43 years since high school and some lovely messages from friends.

Jack just arrived back from Europe so we are back to full house! I need now to arrange activities and visits when chemo free.

Chemo is causing some nausea and constipation and appetite is poor. Very tired from lack of sleep last night as I opted out of taking the
Mirtazepine thinking it would help make me less groggy next morning – mistake!

On the Duderstadt DC treatment:

Not sure how much it has benefited me or how much of the four or five months of strength was due to coming off chemo but I have no regrets regarding the decision and am glad and hopeful we may have been a small part of developing this immunotherapy.

Interesting note From Claire's blog 'As Prof proudly said to Claire, "You are officially my longest surviving non chemo patient"'

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.

Wednesday, 6 August 2014

Chemo round 2

Appointment Monday with Dr Manders at the Kinghorn prior to second round of chemo. Based on first round he upped both Oxyliplatin and Xeloda to 3500mg.

Discussed PET scan which shows extensive metastasis as we know – I will get a copy of it and upload next time I speak with him.

As I had managed to make it to the outside I dropped into AKA to see Austin Kaitlin and the gang and had a lunch down at the Australian Youth. Delicious pumpkin soup and a lemonade.

Attempted to pick up a cheque but bank holiday here so bank was closed... so drove around to find the Aloxi injection needed for the chemo on Tuesday.

Had a full day at Kinghorn Tuesday with chemo and one unit of blood. Strong reaction to upped Oxyliplatin (don't ask!) so taking today easy.

On the DC treatment:

I have no regrets regarding the decision and am glad and hopeful I have been a part of developing this immunotherapy.

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.
 

Tuesday, 29 July 2014

Moonface

Appointment at Sacred Heart yesterday with Prof Chye. He spent a lot of time with us, organised treatments/pills plus sorted out posible respite care in a great little place in The Wolper if and when we need it plus back up at home too. So very happy with that – also had blood test in case I need more red cells.

We altered medications to reduce Dexmethsone to 2mg per day as side effects are beginning to appear – including leg strength and puffiness – which explains the moonface!

I am now on the following:
Targin for back pain (10mg 2x daily)
Dexmethasone (2mg 1 x daily) for appetite and nausea
Nexium (20mg 1 x daily) acid reductioon
Pramin (3 x 100mg daily) for appetite and nausea
Allopurinol (1 x daily) a gout edication that cleans up left over debris following chemo
then Mirtazepine (1 x 15g in the evening) as a side effect it boosts appetite and also helps sleep and is an antidepressant to boot so it seems a great choice.

Managed to drive around – dropped Laurel at Jenny Hope our friend in Paddington for lunch and went and got my drivers licence renewed – so feel like I achieved a lot. Almost normal!

Finally we used an Amazon gift card given to us by my brother Tom!! We are now proud owners of the Nutribullet juicing thingy – it’s awesome… looking forward to healthy drinks all round!

On a side note had a great night's sleep –perhaps the Mirtazepine or just being up and around.


On the DC treatment:

I have no regrets regarding the decision and am glad and hopeful I have been a part of developing this immunotherapy.

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.


Saturday, 26 July 2014

Narnia

I intend to spend the day out of bed and in our study which is imaginatively accessed 'Narnia style' through our wardrobes in our bedroom – I like that! 

Treatment continues as chemotherapy with Xeloda 3000mg (6 x 500mg pills) daily – in the language of the docs – I'm tolerating it well. No nausea, though appetite is small and fatigue strong.

I get to have a seven day break next week so hope the tiredness wears off a little as I rebuild cells. Also the reduction of Targin may help with drowsiness – back pain seems to be under control and I'm down to last few Targin til next script so limiting them a little.

I emailed Julian Barden regarding the Biosceptre DC treatment and shared my results so far. He is keen to know "What were the relative responses with the different treatments? Was there a material difference over time using the different activation pathways? I am developing the new systemic therapeutic with ideas of initiating clinical trials subject to approval as early as Q1 2015."

So what of the DC treatment? It's hard to know how much it worked or didn't – I certainly had four or five months of good "quality of survival" in UK and Germany but how much that was helped by stopping chemo and the results of that first treatment is impossible to measure.

I have no regrets regarding the decision and am glad and hopeful I have been a part of developing this immunotherapy.

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.
 



Monday, 21 July 2014

Spending spree

Bought a massage pad for my study chair from Homedics – now officially addicted and refuse to get off it!

Chemo is kicking in with fatigue and appetite but managing just with Laurel looking after me.

Have a cough/cold which may be related to lungs but more likely winter Sydney thing as so does Laurel. Also metallic taste to everything – so masking with lollies...

We saw financial adviser today which is reassuring and at least we appear to have a plan.

Lizzie is midst HSC trials and Jack comes back on the 12th.

Family in UK suffering heatstroke (it's 28º!) but marching on and enjoying Monty Python gigs.

I have a week off xeloda starting from the 28th so looking forward to that in the hope tiredness abates a little.

Then round 2.

Thursday, 17 July 2014

Give blood

Had my first chemo treatment at The Kinghorn Centre at St Vincent's – Oxyliplatin plus 3000mg Xeloda for 14 days then 7 day rest.
The centre is modern, efficient and friendly – with cheese and crackers on tap!

Also had two units of blood which seems to be kicking in – red cells were mid 80's so much needed. I can't encourage everyone enough to donate blood and am very grateful to whoever did!

My veins are apparently a bit oompa so a bit tricky to get cannula in but we did – mostly it's down to hydration so I pour as much in as I can.

Pain seems more managed – using 2 Targin day and night – apparently not a huge dose (5/2.5 each) but should control it.

Still have sleep issues – but hope it's the Dexmethsone increase to 4mg – (8mg for 3 days initially with chemo as they also prescribe it as a nausea control).

Looking forward to getting back up and around and to see the team at AKA Brand Design again!

A big thank you too to Ralf Harding who has kindly helped pull together some sense of our financial situation – we're seeing an independent fee based adviser next week so will share Ralf's master plan. It's this stuff that keeps me focused on stuff other than the treatments and keep me a little sane. That and welcome chats with my daughter Lizzie - though those can get a bit surreal!

So what of the DC treatment? Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

I have shared CT scan report and updated Dr Nessulhut but would have to revisit plan once we have had the chemo here.

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.


My own Duderstadt DC treatments are linked here.

Thursday, 10 July 2014

St Vincent's

Following awesome haircut to chop my chemo curls at good old fashioned barber up the junction we met with Professor Richard Chye at Sacred Heart Hospice and Palliative Care in Darlinghurst to discuss CT scans and options – he referred me to Professor Epstein at The Kinghorn Centre. Also prescribed Targin for pain.

Sacred Heart seems like a calm, restful place though Laurel found the Old Timer Swing Music coming from the patients lounge a little disturbing but hey come back later and check out my Jitterbug!

Plan at Kinghorn is to address tiredness and pain starting with a PET scan to see if anything related is causing the pain. Meanwhile we can hopefully get a decent sleep or two with Temazepan sleeping tablet and Targin for pain – so looking forward to tonight!

DC treatment is on hold – do I think it was successful – the past five months certainly were valuable in organising my life in Europe and seeing family as well as being chemo free. It could well be that coming off chemo also helped but either way I'm glad to have had the treatment in Germany and will continue to share my results with them. It is a pity that options aren't yet available in Oz. With the current metatasis and lack of energy to travel I couldn't continue right now.

For now I will begin chemo on Tuesday next week at Kinghorn with Oxaliplatin and Xeloda.

Again if anyone would like to know more about the Duderstadt DC treatments it's linked here.

Sunday, 6 July 2014

Scan

Back in beautiful Bronte this morning as Laurel had GP appointment.

Picked up my CT scan report. Shows progression in lungs, liver and peritoneum. Explains the tiredness too particularly with the anemia.

Not sure where that leaves us with ongoing treatment but have appointment at 8am tomorrow with St Vincent's here in Sydney. I've sent the report on to Dr Nessulhut.

Wouldn't be able to make the journey to Duderstadt anyway so will put myself in the care of St Vincent's and the team at Sacred Heart.

Pain is manageable and eating steadily, not sure still how much jetlag is affecting tiredness but will be nice to get back to some 'normal' energetic level...  there's only so much on Netflix!




Saturday, 5 July 2014

Blood and guts

Sat in the garden enjoying the Sydney winter sun.

Blood test results – some high 'markers' – high white blood cells of 25.9 could be caused by DC treatments of course and and a low red blood cell count of 91 indicating anemia. CRP is 123.4.

Will collect CT scan report which was done on Thursday and will also be useful at St Vincent's saving time with scans, blood tests, etc there.

GP also noted higher numbers connected to liver function but I'm not completely sure what that means at this stage.

Back pain has subsided and appetite is stronger – so much nicer when food is made for you! Don't know if I'm just lazy or it's down to fatigue/appetite but it's all too easy to simply skip drinking and eating when you leave it to yourself to manage. Lesson learnt.

Sleeping better too. Have used Melatonin at night to help offset jet lag and seems to help.

I'll share the blood and scan reports with Dr Nessulhut and see what they think – hopefully St Vincent's/ Sarced Heart may be able to offer a day or two of care and increase red cell count with transfusion as we did initially at POW Randwick. Think hydration is improving but perhaps could also be boosted. Weight is still down but constant.

Always feel a little guilty with transfusions as I know how scarce blood supplies are and having lived in UK (even though a vegetarian) I've not been allowed to donate here.

If anyone would like to know more about the Duderstadt Dendritic Cell treatments it's linked here.

Tuesday, 1 July 2014

Best Before End

A couple of days off a full year since diagnosis and my NSW driving licence is up for renewal – they wrote to me with the choice of 1, 3 or 5 years – an interesting decision when you've been given a shelf life – 10 month median for esophageal cancer.

So I'll plump for the 5 year gold just to bugger up those survival statistics.

Saw GP yesterday at walk-in medical in Bondi Junction – so much simpler and faster than Wapping NHS GP fixed appointment system. Got an appointment at St Vincent's on the 8th with the palliative care team plus X-ray and MRI for back pain. Results this morning showed everything normal and pain probably muscular which should improve with time and exercise – if I can only be bothered to get off my small, thin arse! Did find some lipomas which some US sites cutely call back mice and claim cause pain but that's apparently unlikely according to the doc so we leave them.

Laurel's been kindly caring for me and feeding fab food so I hope some of the weight loss can be regained.

Once I get new CT scans and we can assess where we are with any new metastasis or main tumour growth I'll share with Dr Nessulhut and continue DC treatment if possible and/or begin chemo if necessary.

Again if anyone would like to know more about the Duderstadt DC treatments it's linked here.





Saturday, 28 June 2014

Back home

Back home in Sydney after a week of indecision whether to go via Duderstadt.

With increasing fatigue and pain I decided to jump on a flight from London. Strangely once on board pain subsided and I got plenty of rest – so much is in the mind I guess but didn't want to risk entering NHS care and getting permanently stuck in UK.

Will arrange for CT scan and opinion here and see where we are up to and travel back as soon as we know, if timing is right.

Thinking St Vincent's may be the best care, if available.

Flight was great and ate more in a day than in the last week or so – I think appetite and dehydration played a large part in energy – or lack of.

Sydney's colder than I expected so Lizzie and I lit a log fire in the living room – luxury!

Again if anyone would like to know more about the DC treatments it's linked here.

Saturday, 21 June 2014

56 not out


Made it to 56! Yo. Spent today with family at Wapping fete day (and pub lunch) and an evening of comedy at the Spontaneous Combustion 25th anniversary bash.

After six months discovered the Fitness First up by St Katherine Docks – pool, sauna, steam room.  Doh! if I'd only known earlier. Tried some acupuncture and then physio to try and relieve lower back pain which has been keeping me awake – don't think it's disease related but the insomnia is so difficult to recover from.

But had first nights sleep in ages last night so that's a great birthday present! Back to Duderstadt for 6th treatment on the 7th July then home to Sydney! Will ask Dr Nessulhut about the IV GCMaf injections.

Called for a GP appointment but earliest is a week away – and they want to close the local surgerey down. How is the NHS considered best in the world?

Jack's off to Paris for a week with friends from Oz – it's been great him being over here – couldn't have managed the past few months without him!

Having sorted out most of our affairs in Australia and UK I'll rest up a bit and hopefully recover a little – with the recent tiredness and insomnia I've dropped the 3 kilos gained over the last six months which is a shame.

Will see if a CT scan back in Sydney shows any improvement following last two Anti PD1 and revised peptide treatments and decide then if I travel again for more.

Also looking to other hospitals in Sydney for treatment back home – not sure Prince of Wales oncology is the best choice following my earlier decisions – not because I'm concerned by their disapproval, just would prefer a team with a more open approach to alternative choices and a more holistic approach to treatments. Even if my DC treatment doesn't work conventional chemo combinations often fail too so I see no reason to dismiss the alternatives.

The obvious choices seem to be St Vincent's or Chris O'Brien's Lifehouse at the RPA So will see if I can get into one of those for local care.

Again if anyone would like to know more about the DC treatments it's linked here.





Wednesday, 4 June 2014

Where are we now

Staying with Jack in uber cool Potsdamer Platza, Berlin following fifth DC treatment in Duderstadt.

Dr Nessulhut again added the Anti PD1 and also the nf-P2X7 has been altered on Julian Barden's recommendation so we hope to see results over the next three weeks.

OK so the first (iv) injection of nf-P2X7 was in the mouth as Dr Nessulhut said that in mouse studies the effect was remarkable in impacting lung metatasis. The second half of the DC cells are injected subcutaneously in the arm as usual.

He also discussed the use of IV GcMAF which has helped other patients to increase macrophages.

Feeling tired and appetite is lower but how much of that is stress and how much disease is hard to separate. Insomnia is a common symptom in cancer apparently.


Exciting news – Duderstadt held a classic car show in the main street this weekend. Check me out checking out the 1970 3.5 280SE convertible... here's a youtube on how to hot wire it!

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.

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.

Saturday, 31 May 2014

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.

Thursday, 29 May 2014

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!

Saturday, 17 May 2014

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).


Wednesday, 14 May 2014

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!)

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.

Tuesday, 25 March 2014

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?


Friday, 21 March 2014

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...

Tuesday, 18 March 2014

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.

Saturday, 15 March 2014

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!