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toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Nano knife for Stage IV PC.

Postby toodotty » Tue Jul 31, 2018 4:29 pm

Hi,
The long awaited thread on Nano-knife for Stage IV PC. I have been doing quite a bit of research on this and I am seriously considering this as my next step. I have spoken to the Professor who is very positive about my tumours, "quite small and discrete so there should be no problem treating these. "
I have also looked at the surgery option via Heidelberg, this is also a possibility but I am so concerned about the severity of the operation, not so worried about dying, more about the quality of life afterwards, it is so invasive and still only semi-successful so I am quite wary of this at the moment. But I have German relatives and Heidelberg is the place to go and they will operate on Stage IV PC cancers, they have a much more upbeat approach.

Having finished Round 6 of Folfirinox, I am now awaiting my scan next Monday (6th August) to see how things are going. I know that I feel much better, I am out of pain, I can sit and I can eat if I am selective. My energy levels are good and my days fairly normal. So fingers crossed.

I am following Nano-knife warriors, so there is a lot of useful stuff out there. Is there anybody can find any stats on the success of this procedure, or who has any experience of this?

toodotty

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Nano knife for Stage IV PC.

Postby kate2101 » Tue Jul 31, 2018 4:49 pm

Hi

Many thanks for posting your NanoKnife findings, certainly a route I’m interested in following. At what stage did you approach the professor and how long did it take for a response?

My second Folfirinox last Thursday has been much better than the first, nausea under control, energy dipped a bit at mo and feel a bit weak and wobbly but nothing like last time and virtually pain free, amazing.

Just hoping I can be a suitable candidate as I have ‘multiples’ in liver, how many I’m not sure and I suppose it depends how they react to the chemo. Can but hope!

Also struggling to find stats on success, when I google it always throws up the lady interviewed for the Daily Mail who seemed to be a walking miracle!

Thanks very much for sharing and loads of luck for your scan on Monday xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Nano knife for Stage IV PC.

Postby Veema » Tue Jul 31, 2018 5:14 pm

You need Dandygal...she researched nanoknife and I'm pretty sure her dad had consultations...maybe have a look at her threads (viewtopic.php?f=4&t=1737 ).
Also Ruthus's thread ( viewtopic.php?f=28&t=1700&hilit=nanoknife)

If you search nanoknife in the search bar at the top, you should find most of the posts about it. It's not something we looked into and our consultant poo pooed it really as there are no published results (or weren't at the time) as to its efficacy.

Vx

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Tue Jul 31, 2018 10:33 pm

Hi Veema,
Thanks for your leads, I will follow this up. My Oncologist also is poo-pooing it, but there is good evidence of success abroad. I am not expecting a cure but more time would be great and the hope for a least some normal life with my family.

Kate2101 you need to get to the end of your Folfirinox treatment, this is the best chance of both shrinking any tumours and reducing an explosive spread due to invasive treatment. The guidance is same for both Nanoknife or surgery, this seems to be the best options. If you are responding well to treatment this is great, the first two rounds were by far the hardest, though each one gives it's own challenges. Today I have a horrible taste of metal in my mouth, even drinking is a challenge. Gritted teeth again!

The lovely nurses will be able to provide contact details for the hospital. The Professor came back to me really quickly, he is also able to pick up the scans via the NHS system, so he hopes to review my scan next Monday (3 days before my Oncologist), which is great.

I will keep posting,

toodotty

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Nano knife for Stage IV PC.

Postby kate2101 » Tue Jul 31, 2018 10:58 pm

Hi again

That’s brilliant the Professor responded so quickly and is able to pick up the scan. I suppose the smaller the tumours the better the chances of success so just hope the chemo has some effect. I’ll do anything if it will help, I wonder if your oncologist might have a different opinion if she was in our shoes.

Coping well at the moment, second treatment much better than the first but like you, have a horrible metallic taste, everything tastes weird. And I’m sure my skin smells funny!

Determined to hang on as long as possible, crave normal life again!

Stay positive xx

timefortiffin
Posts: 5
Joined: Tue May 29, 2018 12:25 pm

Re: Nano knife for Stage IV PC.

Postby timefortiffin » Wed Aug 01, 2018 4:06 pm

Hi, I'm looking at this for a relative. The Professor's PA said he can review the latest CT scan for free to assess whether Nanoknife would be suitable for my relative. She also gave me the cost for the consultation, the treatment to the pancreas and also the liver. Now i just need to find out how much time i would have to fundraise for the treatment before it would need to go ahead.

I haven't been able to find any relevant statistics. Certainly it appears that Nanoknife has not been compared directly to Whipple in a Clinical Trial. Also there seem to be so many factors at play in each persons reaction to treatments.

Age and general health seems to play a significant part in how effective Whipple is, and as to Heidelberg, have others come to the same conclusion that they not only have more experience doing this operation but also are more willing to operate on difficult cases. Their willingness to take on the difficult cases also means it may not work.

I can find mention of Nanoknife being able to be used again but not whether Whipple could be used after a Nanoknife treatment for local reoccurence.

PCUK Nurse Jeni
Posts: 1021
Joined: Mon Jun 14, 2010 1:30 pm

Re: Nano knife for Stage IV PC.

Postby PCUK Nurse Jeni » Wed Aug 01, 2018 4:31 pm

Hi timefortiffin,

And, thanks all for the posts.

I wasn't sure, timefortiffin, whether your relative has already had the Whipples and now has local recurrence or not? Or, what did you mean by local recurrence?

You are welcome to drop us an email to explain a bit more if that's OK, and hopefully, we might be able to assist you further? Details are in the signature below.

Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Thu Aug 02, 2018 7:07 am

Hi timefortiffin,
Unfortunately there are few statistics regarding Nanoknife, there just haven't been any clinical trials as far as I can tell, so most of the evidence an anecodotal, but this is good enough for me. Ridiculous really as Nanoknife has been used successfully (in extending life) for a number of years, but it is treated with suspicion by Oncologists and NICE.
Re Heidelberg, yes they are prepared to take greater risks, but these are measured risks and they do have some success even with Stage IV PC. It is up to the individual as to whether they are prepared to take these risks, or just wait for PC to claim them. At least there is a choice.
toodotty

timefortiffin
Posts: 5
Joined: Tue May 29, 2018 12:25 pm

Re: Nano knife for Stage IV PC.

Postby timefortiffin » Thu Aug 02, 2018 10:09 am

Thank you Jeni for your reply,
No they have not had Whipples as currently not operable. I am trying to gather up information so they can know their options if it remains the same or if they want an alternative to Whipples. I will contact one of your nurses as soon as i have an update on their current state.

Yes toodotty,
i am baffled by the holes in information. I keep thinking that surely there must be more information/statistics on Nanoknife and other things whilst trawling the internet. I liken it to disappearing down a rabbithole, could get stuck down their endlessly searching and not take action with the smaller amount of information. And yes i agree about Heidelberg and the fact there is at least an option.

PCUK Nurse Rachel R
Posts: 28
Joined: Thu Jan 25, 2018 10:52 am

Re: Nano knife for Stage IV PC.

Postby PCUK Nurse Rachel R » Fri Aug 03, 2018 3:44 pm

Hi Folks

I thought it might be a good opportunity to update you on some aspects that you are mentioning in these posts.

Currently in the UK we are still lacking sufficient data to recommend Nanoknife in certain conditions.

We are aware that the provision of this may differ with each individual and also the trust where this treatment is offered.

IRE may be suitable for some people with locally advanced pancreatic cancer. Locally advanced pancreatic cancer is cancer that is starting to spread outside the pancreas to nearby organs and blood vessels and can’t be removed with surgery.

In some of the hospitals that provide IRE, it might also be offered to a few people with borderline resectable pancreatic cancer. Borderline resectable pancreatic cancer is cancer that has grown very close to or around the major blood vessels near the pancreas.

The National Institute for Health and Care Excellence (NICE) have said that IRE should only be used in research studies looking at how well it treats pancreatic cancer.

There is even less clinical evidence regarding the efficacy of Nano-knife in treating metastatic areas secondary to pancreatic cancer.

The important thing to stress is that if considering Nano-knife that each patient would be assessed individually according to their specific clinical condition.

Heidelberg Consultants will often consider more high risk surgical patients however it is our understanding that they will not usually breach any of the guidelines in relation to performing surgery on people who have advanced or metastatic disease.

In some instances if there is blood vessel involvement that is restricted to a minimal area, this may be considered as higher risk surgery that could be undertaken at Heidelberg.

If you wish to touch base with us, we are certainly able to talk through this on an individual level.

Best wishes
Rachel

Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Sun Aug 05, 2018 7:41 pm

Hi Rachel,
Totally agree with what you have written, Heidelberg is the centre of excellence in Germany for treating pancreatic cancer and they will not undertake operations if there is no chance of success. However, they also recognise that chemotherapy can cause tumours to shrink and in some cases disappear which may make surgery a more viable option. They do not write you off at the start, and their success rate is one of the highest in the world. So they are doing something right.
Also agree re Nanoknife, it won't be offered at the best centres if it is not a suitable solution.

toodotty

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Nano knife for Stage IV PC.

Postby Veema » Mon Aug 06, 2018 2:41 pm

Our hospital provided chemo to reduce the tumour and then my husband had the whipples...it's not just Heidelburg that will do that.

Vx

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Nano knife for Stage IV PC.

Postby Dandygal76 » Mon Aug 06, 2018 4:25 pm

Hi All

Sorry you are going through this terrible illness.. it really is pants. I do though have some info that may help your decision making process. I dealt with Heidelberg and they will not take on stage IV patients as far as I am aware... and trust me when I say I did not take no as an easy answer (sorry PCUK that I was a pain in the neck everywhere!).

Edited by moderator.

I apologise if this sounds all negative, it is a whole different view though from this side of things. On the plus side, if I was doing this again, I would go straight for a full biopsy and genetic profiling of the tumour - because you never know and you may have 'lucky' tumour. I would also look at the trials which, because of the care factor, has a 3 - 6 month longer life expectancy than normal NHS treatment. I am sure PCUK nurses will correct anything wrong in what I have said.

DG

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Mon Aug 06, 2018 10:22 pm

Hi DG,
Thank you for your input, it is really useful. Re trials there is very little available for Stage IV. There is a possibility of a POLO trial but that is dependant on a specific gene mutation. I believe that there may be a possibility of clinical trials for Nanoknife on locally advanced PC patients, but don't expect this soon (and not that I qualify anyhow). There is quite a lot of evidence in the US of the effectiveness of Nanoknife and I do not expect it to be a one-off procedure. I know that further tumours are likely to appear as the cancer stem cells take root over time, so even if the initial tumours are blasted then more are likely to appear.

toodotty

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Mon Aug 06, 2018 10:23 pm

Hi Veema,
I have been told in no uncertain terms that once Stage IV, always Stage IV and therefore no chance of Whipples. This is not only my hospital but also a private surgeon (also working out of {name removed - moderator} hospital).

toodotty