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.
 

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.

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.

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.

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.

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.

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.