Starting a long long journey

[InfoForMum]

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]

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]

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]

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]

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 XXX came up. The XXX holiday has at least given us more factual information on my situation which will be sent to Professor to see if he still considers the procedure to still be appropriate.

Again many thanks and all the best!

Steve

X

[Slewis7313]

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

Steve

[davidandsam]

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]

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]

Hi David

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

hugz

Marie

xx

[InfoForMum]

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

[davidandsam]

Sarah

Thanks for your kind comments and the up ness of the chin remains !

I will post more news as I have it. Sat in the chemo suite as we type awaiting blood results which methinks are going to be fair to crap meaning a potential delay in cycle 7 let's see

More soon

David

[marie souter]

fingers crossed for you xx

[Slewis7313]

They always did my bloods the day before, but somehow the results were never there on time. We certainly learn how to wait!

Good luck

Steve

X

[davidandsam]

Steve

So true, waiting is the one thing we get accustomed to!, I was wrong however the bloods have bounced upwards in the right direction for whatever reason and I am enjoying the delights of an oxaliplatin infusion from the folforinox suite as we speak,

It is weird but I look forward to my chemo as I always feel we are moving forward.

Speak soon

David

[InfoForMum]

Yea! Not for having the oxaliplatin and having your fingertips not being your own for the next 5 or 6 days, but for the fact your body is obviously tougher than you think!

Perhaps the old electrification has knocked out enough to give your body a little rest from feeding or trying to fight the nasty wee (insert preferred name here)

Onwards and upwards m'dear and hope old day 5 isn't too bad.

Sarah

XX

[nikkis]

Really glad to hear they could go ahead David. Just as Paul starts to feel a bit better, chemo is due and wham down he goes, and yes we look forward to it too! It's just so nice to be able to tick another one off. Although I was very disappointed when I realised I had miscounted and thought he had only 3 left when in fact it is 4. Perhaps at some point I will need some treatment to get my brain working again, as I am sure I used to find sums such as 12 minus 8 quite easy!

Take care all,

Nikki

[Slewis7313]

Hi David and Sam, just wondered how you were getting on. I see you logged onto the forum on 7th January, but did not post. I do hope all is going well.

Steve

X

[J_T]

Echoing Steve's query. Hope all is well with you David.

Julia x

[InfoForMum]

Me 3 . Hoping it's all so good you're giving the cancery stuff a rest just now. Either way here if/when needed and sending good vibes.

Sarah

[EmmaR]

Hello David &Sam

How are you doing not heard from you of late all well ?

EmmaR x