A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Starting a long long journey

Postby nikkis » Tue Nov 26, 2013 2:44 pm

Hi David,
We were wondering how you had got on, sorry to hear you have been feeling rubbish! Paul's oncologist has suggested nanoknife at the end of his chemo to blast the last bit of tumour he has left, so glad to hear that you feel it was worth while. Paul having folfirinox post surgery is also not a normal path, but yep, pushing boundaries is the only way to give this blessed thing a kicking. Really hope the scan results are good, and hope Sam is coping ok too!
Take care,
Nikki

davidandsam
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: Starting a long long journey

Postby davidandsam » Tue Nov 26, 2013 3:15 pm

Thanks Nikki

Good luck to Paul and Nanoknife, it seems to make sense which ever way you look at it, be it mid or end of chemo treatment it will do it's job I am sure.

Sam has been amazing, she has morphed into superwoman juggling the dogs, the horses and our daughter as well as looking after a very bored person ! she is the true unsung hero in this journey ! I am back work after a 10 day break as I can no longer stomach daytime TV! Homes under the hammer !!! you should be ashamed of yourself!!

Post op hasn't ben the easiest of times but compared with what most of us have to put up with on a daily basis it is a relative walk in the park!

David

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Starting a long long journey

Postby nikkis » Tue Nov 26, 2013 3:33 pm

David, Homes Under the Hammer is the best, in our dreams we of off to an auction and starting our property empire when this is all sorted. Does Sam peel a nectarine for you? Paul feels this is my ultimate act of devotion!
Nikki

davidandsam
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: Starting a long long journey

Postby davidandsam » Tue Nov 26, 2013 3:43 pm

Hi Nikki

Hmm I think you have just shown your guilty pleasure ! homes under the hammer and 1980's episodes of Minder are enough to scare anyone back to work.

As for peeling anything (including spuds) Sam insists that whilst I can I will and I have to say this does keep me motivated, Jam on toast at anytime day or night served with a sweet cup of tea is her dedication to the cause. That and kicking me up the ar*se if I get a bit mopey!

Take care and keep on peeling lady

David

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Starting a long long journey

Postby Cathy » Tue Nov 26, 2013 4:35 pm

Homes under the hammer indeed!

Jonathan watches that every morning - he loves it!!

Sorry to hear you have felt so rough David after the treatment but thank you for such an informative post which others considering the treatment will find really informative in what to expect.

Well done on getting back to work so quickly as well, clearly you must be improving, even if motivated by daytime tv!!

Keep on keeping on (and keeping us updated)

Cathy xx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Starting a long long journey

Postby InfoForMum » Tue Nov 26, 2013 6:46 pm

Many thanks for that update David and sorry you've had a bit of a hard time. Sam is a star I agree. Will pass on your experience to Mum. We're going for first consult tomorrow.

I have to be honest I didn't foresee a hit on your immune system as a side effect, or the level or duration of pain you're talking about. All good info. Guessing the wee plague monkey also didn't help (what we affectionately called ours when they went through the "lets see what we can catch and give mummy today" phase of nursery).

It's given me some more questions to pass on to Mum. As usual this forum and folk like you are priceless to fill in the gap between 20 min consultations with the experts and the stuff you really need to know about day to day effectts and whats "normal".

Also love the determination that no matter what, you're adding to the store of knowledge about this new stuff. Reflects my latest posts closely. Adding my thanks for the bravery!

Hoping the pain subsides quickly, but do keep an eye in case it develops in the direction of pancreatitis. Mum put up with a high baseline of pain on left of mid abdomen with a bit of a bouncy temp for 6 days before I persuaded her to hossy. Like you she'd had the area messed about with by 7 attempts to get a biopsy, hence waiting a while for it to get better before deciding it needed checked. High amylase levels were what confirmed the diagnosis.

Don't want to be a downer with that as more generally so pleased it was done successfully and will keep an eye out for updates.

Hugs for you and Sam!

Sarah
XXX

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Starting a long long journey

Postby J_T » Tue Nov 26, 2013 11:07 pm

Hi David, sounds like you've been through the mangle a bit but still full of steely determination I see! Hats off to you and great that you've posted a comprehensive account of the procedure and aftermath. As Sarah says, so useful for others contemplating going ahead with nano knife. Hope you are soon feeling better. Top marks to your Sam too!

Homes Under the Hammer? The music and puns drive me NUTS!!!

Manly slap on back to you!

Julia x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Starting a long long journey

Postby Cathy » Tue Nov 26, 2013 11:44 pm

Oh the music is the worst! It makes me laugh how they shoehorn it in...... Still, keeps me from Jeremy Kyle. :)

Well done David on escaping daytime tv, and Sarah, will be looking out for your post after your consult.

Cathy xxx

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Starting a long long journey

Postby cestrian » Wed Nov 27, 2013 6:51 am

Hi David

"Only fools and horses work" as Del Boy used to say but if the alternative is daytime TV???

Here's to your continuing progress and now I'm off my clinical trial your surgery may be something for me to discuss with the professor next month.

Good luck and I hope your wallet's tears have now dried up!!

Love and Peace

Mike

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Starting a long long journey

Postby Slewis7313 » Wed Nov 27, 2013 10:02 am

Welcome back David and thanks for the frank update on what you have been through. Sorry to hear you have suffered since the procedure, but it is important for us to have the facts and not have them 'pretty'd up' to spare us.
I/We have been waiting with anticipation for your feedback as NanoKnife was at the top of my list before the aborted Whipples at Heidelberg came up. The Heidelberg holiday has at least given us more factual information on my situation which will be sent to Professor Leen to see if he still considers the procedure to still be appropriate.

Again many thanks and all the best!

Steve
X

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Starting a long long journey

Postby Slewis7313 » Wed Nov 27, 2013 10:04 am

Apologies for the rubbish grammar..........too much daytime TV!

Steve

davidandsam
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: Starting a long long journey

Postby davidandsam » Wed Nov 27, 2013 11:05 am

Hi Steve and others thank you so much for your kind comments

I think the recovery period and associated bits and bobs will differ massively person by person and situation by situation, for me I took the hard route with a full on Folfirinox session in tandem with a General/local/muscle relaxant and then the procedure. I did not make it easy for myself but this was considered the best cause of action.

I hope for others the convalesence is a little easier. whatever it is in my opinon a worthwhile procedure for advanced stage IV, we have very few ablation options and this should be a promoted procedure in the mainstream and not just offered privately! (RANT OVER)

Mike I haven't had the invoice yet, I am hoping for a January sale or at the very best a buy one get one free deal ! I can assure you that you will be able to hear the tearing open of my wallet wherever you may be in the UK!

I am meeting the Prof again next Tuesday and he will give me a quick Ultrasound to check progress and discuss what to do next. I will report back as soon as is practical

until then chums please keep on fighting the fight

let's try and beat this bloo*y disease together

Regards

David

PCUK Nurse Jeni
Posts: 1066
Joined: Mon Jun 14, 2010 1:30 pm

Re: Starting a long long journey

Postby PCUK Nurse Jeni » Wed Nov 27, 2013 1:02 pm

Hi David and everyone else who have posted!

David, thanks for sharing your experiences of Nanoknife on here, really helpful, and of course, great to hear that the Professor feels it has been successful.

Just one observation to clear up folks - Nanoknife is a localised treatment, not a systemic one. This means it will only treat the local area, in this case the pancreatic tumour. It is NOT a systemic treatment, therefore, it will not have an effect on the bone marrow or blood count. The neutropaenia and low platelets David suffered from would have been as a side effect of the Folfirinox chemotherapy, just happening to coincide with when the Nanoknife procedure was carried out. It is important to understand this, because it is not a side effect of Nanoknife.

I hope this makes sense?

Many thanks,

Jeni.

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Starting a long long journey

Postby marie souter » Wed Nov 27, 2013 7:05 pm

Hi David

Hope all goes well with the ultrasound will be thinking of you

hugz
Marie
xx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Starting a long long journey

Postby InfoForMum » Wed Nov 27, 2013 7:37 pm

Ditto for Marie's comments David,

BTW your ears must have been burning today ;-). Prof was very professional and respected confidentiality, but I did use your example to call him on the statement of minimal transient pain expected post procedure. He did take a couple of steps back, regroup then say it's a priority for him to follow up post surgery as he's doing with you shortly.

Hope you don't mind and I'm sure it can't hurt to keep you front of his mind! Hope the pain is improving too.

I've updated my post about our experience and choices in some detail (me going into lots of detail - NEVER I hear you cry). To summarise we're going to join the nanoknife family on the 18th unless we're chucked other googlies (there was a biggie today, but I won't hijack your thread).

Wish us luck with wrangling the insurance company and wishing you all the very best for that ultrasound and maintaining your brilliant chin upness in the mean time.

Sarah
XXX