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.

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.
 

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.

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.

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.

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!

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.

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.