Nano knife for Stage IV PC.

[toodotty]

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]

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]

You need Dandygal...she researched nanoknife and I'm pretty sure her dad had consultations...maybe have a look at her threads (http://forum.pancreaticcancer.org.uk/viewtopic.php?f=4&t=1737 ).

Also Ruthus's thread ( http://forum.pancreaticcancer.org.uk/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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Dandygal76]

I am not on here very often but this has really set me thinking as to why we took this route and why it was not the best route. If you look at the NICE approvals - it took a huge fight to make Abraxane available and rightly so that it should be available. It is evidenced that it extends lives a few months at a stupid cost to the NHS. They are willing to spend a significant amount of their budget on this decision. Nano is silly cheap in comparison, If it worked it would be a huge win for the NHS. Said professor is making money from our desperation (I will take the liability PCUK). Don't be fooled... sociopathic traits do exist and he is charming and warming but he knows everything I say is correct. Look at my thread and see who started my dad's treatment (as PCUK do not like me naming). He still makes money privately but he is passionate for solution and at the forefront of cancer's like these. All around the world. We didn't win but he gave my dad hope and a chance... put him on a trial and my dad lived his life in hope.

toodotty, please be careful what you read although I am sure you are fully informed. Dr Martin et al perform open surgery nanoknife - their procedure is not comparable to said professor. Also, they are open and publish their results. Just ask said prof for his stats and keep a copy of it... surely he has nothing to hide? If we went to next procedure it would have been £40K. You are entitled at that price to written confirmation of his results.

Edited August 7, 2018 by Dandygal76

[Dandygal76]

I just know so much where you are at. Screen print this and give it to him, get my name from PCUK or it is in my thread somewhere. Tell him to sue me for slander... he would not have a leg to stand on. I really wish you all the best and it is why I stay away from here in general... I am not always right, even though I think I am. But I do love riding across that moral high ground at times. I hope it works for you, perhaps it does for some. My dad sort of got 'blasting the bugger' than he did chemo.

[PCUK Nurse Dianne]

Dear Forum users,

You will notice that this thread has been edited as some aspects do not meet the rules and regulations of using this Discussion forum. I would hope that you have all read through the forum rules and be reminded that we do have to be respectful of all health professionals and health institutions. You may have individual views however this is not within the remit of the forum to cause any reputational damage to others.

This forum enables you to gain support during these difficult days, and we encourage you to do so safely and respectfully. We also encourage you to touch base with ourselves if you have specific medical related questions that we can guide you with or link with other health professionals to gain further information.

I will remind you that our rules and regulations state the following:

4) Keep it legal.

Please do not identify specific healthcare professionals (especially by name). Please do not 'name and shame' individuals or organisations. Publishing statements which damage others’ reputations could leave both the forum user who posted the statement, and Pancreatic Cancer UK, vulnerable to legal action under libel law.

I am sure you will all appreciate this.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support phone line: 0808 801 0707

Email: nurse@pancreaticcancer.org.uk

[Dandygal76]

Thanks Diane but I do think everything I said was legal and I did not name neither hospital or doctor. It is clear in my original thread that he stated he was publishing his results and did not do so. It is not something I made up. However, my intention was never to put PCUK in a position that they would have to spend any of their valuable resources defending my take on things. I totally understand where you are coming from and IF i win my legal case I hope I can come back and legitimately publish the results here. PLEASE, anyone considering NANO contact the nurses. Do not waste your money on stage IV PC Nano knife without doing so and without requesting ACTUAL stats and results from any doctor saying they will provide the procedure. Go on a holiday of a lifetime instead. If you would like my original take on this (that PCUK moderated) then you can get my e-mail from PCUK and I will tell you personally. I am back at work again tomorrow and will be on my e-mails (been off for few months if anyone tried to contact).

[toodotty]

Hi All,

First Nanoknife booked for next week, initially to attack the liver tumours, the pancreas to be targeted the following week. Not sure how my Oncologist is going to take this, I was unable to make my last appointment as I was in hospital with a blocked bile stent, but I guess I will find out this Thursday when I see him!

I have decided that I will have to become my own clinical trial, it seems to me that the people who survive the longest are the ones that take things into their own hands.

I have met my first milestone target, of still being alive when my son gets his A Level results (this Thursday), something that was looking increasing unlikely in May. Next target, eldest son's 21st at Christmas.

toodotty

[kate2101]

Wow!

Good luck! I’ll be folllowing your progress with great interest. Presume the professor is doing it? How were your recent scan results?

Xx

[toodotty]

Hi All,

Long awaited appointment with Oncologist today but unfortunately they have not been able to view my CT scan which is at another hospital. They have not been able to download it successfully and despite me hand delivering a copy on disk yesterday, this has not been reviewed either. Hugely disappointed, and I may have to have another CT scan if the last one is not up to scratch.

The good news is that the Oncologist is fully supportive of me having Nanoknife. He says that they used to use this at one of the Trust's hospitals but found no evidence of it making any difference, so they stopped doing it and now it isn't even an option on the NHS.

So we have agreed to me taking a chemo-holiday, partly so that I can do Nano-knife but also because of the toxicity of Folfirinox. If my condition remains stable we will hold off for as long as possible before starting the next phase, but have regular reviews.

toodotty

[Michaela1]

Sorry they couldn't view your view your CT scan Toodotty, but like you say great your oncologist is in board! Do you know when your next appointment will be with nanoknife again?

Sounds great to have a chemo holiday too! How many sessions have you had again of folfrinox? Are you going to try and have a few days away with your time off?

Good luck when you do have the nano knife.

Michaela.x

[toodotty]

Hi Michaela,

I have had the full 6, though 3 were reduced rounds, (2 because of jaundice and 1 because the bottle leaked down my T-shirt for 8 hours, oops!) Feeling better than ever, about to go out on my bike for the first time since diagnosis, hopefully 10 miles to go and pick up my CREON prescription.

First Nanoknife scheduled for Wednesday, eek!

Hope you are feeling OK.

toodotty

[toodotty]

2 days to go to Nanoknife. I had a very useful discussion with the Prof this morning. He is concerned that the last CT scan shows things as a lot worse than he expected. He particularly wanted to know how I was feeling in myself, and I feel better than I have for most of this year. I did say that I wondered whether the CT scan was even mine, it paints a picture of someone who is bed-bound and on oxygen, which I am anything but. I suggested that a lot of what had been reported was not fact but an educated guess of where I should be given than I am 5+ months into this disease. He admitted that there was a lot of truth in what I was saying, so plan for Wednesday is further investigative tests before we start, I have not even had a biopsy on the liver mets, this might not even be cancer. If he is not sure about the liver, he will switch to the pancreas first, then re-visit the liver later.

toodotty