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LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Nanoknife - experiences?

Postby LMD » Mon May 05, 2014 10:47 am

Hello everyone
This is the first time I have posted... I have read many of your posts and am grateful for the help, hope and, at times, comfort they provide. My condolences to those who have suffered the loss of a loved one - so many brave people.

My father has PC and I would really like to know about Nanoknife in case it is something which could help him. I have read the information provided by PCUK, which was really useful and I wondered whether anyone has any experience of Nanoknife treatment which they would be willing to share, please? Any and all information would be very much appreciated....

Wishing everyone all the best and 'stay strong' (I know how hard it can be though! Big hugs to you all)
LMD

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Nanoknife - experiences?

Postby sandraW » Mon May 05, 2014 11:27 am

Welcome to the forum the place where though everyone is lovely, no one wants to be here, sorry I can't help as no experience of Nanoknife, but think Sarah will be able to help, just wanted to say hello take care sandrax

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

Re: Nanoknife - experiences?

Postby J_T » Mon May 05, 2014 2:17 pm

Search RLF, MSH and Infoformum for nanoknife experiences. SOme good information there.

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: Nanoknife - experiences?

Postby LMD » Mon May 05, 2014 8:25 pm

Thank you Sandra and J_T for your replies.
J_T I will search as you have suggested - thank you, and Sandra, thank you for your message - take care too xxx

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Nanoknife - experiences?

Postby RLF » Mon May 05, 2014 10:32 pm

Hi, yes I'd be happy to answer any specific questions you might have though we didn't go down the Nanoknife route in the end for Carls secondary liver tumour, but I have done a tonne of research on it. Mark (msh on here) had it done on his primary pancreatic tumour and I believe it was successful at ablating it. Sarah's mum (infoformum on here) had it done too but believe the tumour had a cyst behind it which made it more difficult to treat.

Basic Nanoknife info though is that currently there is only one guy in the uk who does it and that's Professor Leen down at princess grace private hospital in london. It is a way to permanently destroy a tumour with very little damage to any other tissue and without surgery even when the tumour is close to blood vessels. However, surgery is always considered the best option for a primary pancreatic tumour if its possible.

You can have it done while having chemotherapy, in fact it is suggested it works better on chemo as the damaged tissue allows the chemo drugs into the cells better. It uses long needles and electricity to do the procedure so there is no radiation or drugs involved. There are very few side effects, but I think you will feel some pain at the site of the ablation for at least a few days to months. Mark says he still has some pain a good few months down the line but not the kind of pain that stops you doing any thing.

I thinks that's the most important info, other than that it's the cost which will stop most people as it's about £13,000 to do it if you don't have private health care, we have private health care and they still wouldn't pay for it because the princess grace is so expensive to stay in.

Let me know if you want to know anything else. I have the number for prof Leens secretary Simone if you want it

Rob
X

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Nanoknife - experiences?

Postby MSH » Tue May 06, 2014 9:26 am

I had the Nanoknife four months ago and at the moment I feel very well. A recent PET scan showed no increased uptake so its all good so far.

It was emphasised to me that it wasn't a cure but that I might expect a response to last some two years. That said it is a new treatment option and I think it has a lot of potential in more ways than one.

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: Nanoknife - experiences?

Postby LMD » Tue May 06, 2014 8:28 pm

Thank you Rob and Mark.
I have looked at the Princess Grace website and will talk to my Dad to about it and show him the information. From what I understand, Mark, Dads situation is very similar to yours, apart from the chemo (different type).

Rob, thank you for the offer of the contact details - I have noted them from the website but if no luck I'll be in touch! How is Carl doing?
Mark, hope you continue to feel well - good to hear the Nanoknife has had a good result for you.

LMD
X

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Nanoknife - experiences?

Postby RLF » Thu May 08, 2014 8:29 am

Carls doing great thanks, chemo today though so he's his normal quiet self. Think he's a bit more positive as after this one only 2 more left! Definitely a countdown he's looking forward to the end of . Keep us updated about your decisions re treatments.
Rob x

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: Nanoknife - experiences?

Postby LMD » Thu May 08, 2014 10:53 am

Hope Carl's chemo goes ok and he keeps positive!
Yes, will keep you updated on treatment decisions here. Still 'researching' as much as I can (particularly for the 'side effects').
Take care xxx

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: Nanoknife - experiences?

Postby LMD » Wed Nov 19, 2014 7:12 pm

Sadly, my father passed away before he was able to go ahead with Nanoknife treatment. The appointment was booked and we were so hopeful but an unexpected/sudden complication took over....

We researched the treatment on the internet and Dad had meetings with his own oncologist, another consultant oncologist (Pancreatic cancer) and the Professor. Dad also spoke to 2 people who have undergone the Nanoknife treatment and who kindly discussed their experiences with him (thank you!)

Keep strong everyone

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Nanoknife - experiences?

Postby sandraW » Thu Nov 20, 2014 12:04 am

Sorry to hear of the sad loss of your Dad, PC is a truly wicked sneaky disease. take care sandrax