New treatment with high sucess- please read

[simon]

Hello

I wonder how many people that come to this site know of the treatment Irreversible Electroporation? ( also called nanoknife)

It is a new procedure ( 2 years) with very good promise for pancreatic and liver cancer.

May i suggest you put it into your google search and read up on it fully.

The procedure is becoming common in USA and if you google correctly you will find one or two very good videos by several clinics.

The reason you may not heard of it yet is because. unfortunately it is only performed privately in the UK and is not available on the NHS owing to the high cost ( I believe about £10,000 to £15,000)

It would be good to hear from anyone, once you have read up on it. Even better if there is someone out there who is wealthy enough to have already had it done.

Perhaps this site and other cancer sites could consider some sort of petition or pressure group to see if it could become a NHS treatment?? If the cost is offset against the reduced cost of less chemotherapy, how expensive is it then?

Please anyone involved with pancreatic cancer, there is real hope here, look it up and lets see if this site ( and others) can help

Simon

[DRAD3]

Hi Simon - thank you so much for sharing this information with us. I wonder whether anyone in the PCUK office knows anything about this treatment? Is it being used in the UK and with how much success? I know the cost will rule out this option for some or many people but surely patients should be told what treatments (NHS or otherwise) can be made available so that they can make an informed choice?

Deb

[susikus]

I looked it up this morning and read lots of articles, then it was discussed briefly on the pcuk online discussion this afternoon. Jeni said there that they are seeing the nanoknife rep later this year. It does hold good promise I think. My question was about being able to have it with metal stents in place - I gathered from my reading that this might not be possible. Yet I also understand that metal stents are better for people who will have or are having chemotherapy. And that nanoknife therapy and chemotherapy complement each other. I found a centre in London that is currently offering it - Hammersmith - and a lot of discussion about whether it is better done by a surgeon or a radiologist. Lots of the discussion is from the US - and where they lead the UK will often follow, but later. Too late for us methinks...

[simon]

Hello

In response to the two replies,, it is being carried out in the UK with good success, although I believe only one radiologist is actually carrying out the treatment and you are right, it is connected to the Hammersmith hospital. But as I say it is purely a private treatment at the moment. I really do believe that all those that come to this site should read up on this treatment. Who is Jeni? is she a moderator?

Simon

[susikus]

I have left this question till last to answer and therefore push it back to the top of the posts, because you are right Simon, this deserves to be more widely known. Yes, Jeni is one of the moderators. She will have read all of this. I noticed last night, Jeni, that there is no info on nanoknife on the pcuk website - would you consider adding it?

Frankly if I thought it would help Pete I would pay the money but I discussed it with him yesterday and he would not - he thinks the chance of success is too slim (he is right, sad to say) and that I will need that money 'when he is gone'. Ever practical...

What is your interest Simon? Do tell us a bit more

best wishes

Sue

[simon]

Hello Susikus

In answer to your question, my interest is my wife. We have children and beyond that I do not wish to disclose personal details, only for the reason this is so painful. As you well know, it is like a living hell and even worse for the person that is suffering.

I am not sure your husband is correct about the chances being too slim. I believe this non invasive treatment is the future. I hope that those that look into Irreversible electroporation view the video by the professor from the American clinic that are one of those leading the way in this treatment.

We all know the damage chemotherapy does to the immune system. This will not do that.

It will not 'cure' the cancer but it may well control it. With concern to 'cure' , there seem to quite a few cancers that cant be cured but can be controlled.

With concern to all this, I have put another post on here titled 'advice on treatment please' and I have not received a definitive reply yet. Can anyone help on this one?

Thank you

Simon

[KickingtheCan]

A year ago I was in a similar situation as Simon and researched Nanoknife extensively for my sister. I had some email correspondence with (edited-moderator) who were VERY helpful. Unfortunately for us, my sister had too many metastases in her liver.

There is little published research into Nanoknife but here is one article I found:

One single-center, prospective, nonrandomized cohort study was performed to investigate the safety of IRE for tumor ablation in 38 humans with advanced malignancy of the liver, kidney, or lung. Transient ventricular arrhythmia occurred in four subjects, and electrocardiographically (ECG) synchronized delivery was used subsequently in the remaining 30 participants with occurrence of two further arrhythmias (supraventricular tachycardia and atrial fibrillation). One subject developed obstruction of the upper ureter after IRE. One adrenal gland was unintentionally directly electroporated, which produced transient severe hypertension. There was no other evidence of adjacent organ damage related to the electroporation. Only 30 day outcomes were reported. Although not a primary aim of this preliminary study, complete target tumor ablation verified by computed tomography (CT) was achieved in 46 of the 69 tumors treated with IRE (66%). Most treatment failures occurred in renal and lung tumors. Biopsy in three subjects showed coagulative necrosis in the regions treated by IRE. The authors concluded, "IRE appears to be safe for human clinical use provided ECG-synchronized delivery is used. Comparative evaluation with alternative ablative technologies is warranted" (Thomson, 2011).

This means you cannot have IRE (Nanoknife) if you have a dodgy heart but it is amazingly successful at treating tumours. Patients report leaving hospital on the following day with just a plaster covering their wounds. No heat is prduced so it can be used with tumours near veins or other important organs. It produces no scar tissue for cancer cells to hide in and come back at a later date. It works best on small tumours.

BUT pancreatic cancer tumours are deep in the body and cannot be reached except with an operation. The recovery time for the operation means a delay in the administration of chemo which is obviously not desirable when alternatives like Cyberknife exist.

Here are my questions though:

WHAT PERCENTAGE OF WHIPPLE OPERATIONS ARE ABORTED BECAUSE OF INVOLVEMENT OF VEINS OR PRESENCE OF METASTASES?

WHY CAN'T A NANOKNIFE MACHINE BE PRESENT AT EVERY WHIPPLE ATTEMPT AND BE USED TO ZAP TUMOURS AND METASTASES WHICH TURN OUT TO BE INOPERABLE?

Obviously chemo would still be required but if you can knock tumours right back it might result in extension of life for relatively little suffering.

By the way, I think NICE are still consulting on Nanoknife so do not expect anything on the NHS for a while.

[PCUK Nurse Jeni]

Hi all,

I will reply as I can to the interest in nano-knife treatment.

Susikis is right, as a team, we have some training organised with the nano-knife rep.in December. Unfortunately, due to diary clashes, we could not have it before then, which would have been helpful in answering your questions.

I have had a little look into the Nanoknife treatment, and of course, there is much to look up and find out. It looks like quite an innovative treatment and is suggested that it enhances the effect of chemotherapy. In oncology terms, it is a relatively new form of treatment, so it is not surprising that it is very specialised in terms of where it is carried out and who is doing it, and what is suitable.

I did speak with the Nanoknife rep. and he was very encouraging about the treatment. It has been used in the UK for about 18 months now, and at present, due to finances, is ONLY available at (edited-moderator) privately. It was available at (edited-moderator)on the NHS, but this is not available right now due to funding. There are plans to have this available on the NHS as soon as funding becomes available, but no time frame could be given for this.

The treatment disrupts the cell membrane but does not affect structures which contain collagen, ie: bile ducts etc…, so these remain patent and operational despite the treatment going on around it. This of course is a great advancement. Some articles of interest can be read here: http://www.jvir.org/article/S1051-0443(11)01352-2/abstract and here http://www.journalacs.org/article/S1072-7515(12)00410-3/abstract

I hope this is helpful, and we are looking forward to finding out more about it ourselves, and will feedback.

Kind regards,

Jeni.

[susikus]

Thank you Simon for your answer and I appreciate your wish not to say anymore. I must admit I did wonder briefly in the absence of any information whether you might be 'selling' nanoknife, and whether I might find similar messages on other forums. I'm very relieved to know that you are genuine. I am sorry about your wife. I have watched the videos you mentioned and it certainly does seem to hold a lot of promise. KickingTheCan's idea of having one at every whipple procedure is an excellent one. The NHS is currently strapped for cash so an economic argument will have to be made. Has anyone been able to find anyone treated in this country with nanoknife for pancreatic cancer? In one of the videos mention was made of pancreatic cancer needing nanoknife via open surgery but my understanding is that that isn't available anywhere in the UK yet?

[simon]

Hello

Thank you for the replies.

I have spoken to one person who paid for the treatment for his pancreatic tumor and he told me that, quote, ' it was the best thing I have ever done' by this he meant in relation to his cancer, of course. He was very positive about it all. I believe because of the cost and that there is only one person presently carrying out the treatment, there have only been about a dozen people having had it done in England ( many more in USA), though there are more (in this country) with liver tumors. The success rate in this country has been about two thirds. Research on the internet will tell you all you need to know.

I did read the message from the moderator and note that she said it may eventually be available via NHS, but no time scale as of yet. I wonder if more pressure could be bought to bear on this question? How could this be started?

Regards

Simon

[simon]

Susikus

I notice you mentioned other forums ( that I assume you visit). Can you tell me please are there other forums, like this one, where I can maybe highlight the question of nanoknife?

Regards

Simon

[DRAD3]

There is an APPG on pancreatic cancer at Westminster on 19th November (see PCUK for further info). I have written to my MP to ask that he attend. I would ask all forum members to do the same. An easy way to do this is to use the WriteToThem website. PCUK is also asking members to pick up the phone on 1st November to ask their MP to attend - so in answer to your question, Simon, we need to start getting vocal - we need to ask for funding for treatments that look like they may make a difference to the current awful stats. Jeni -do you know what will be covered at the APPG? Not knowing much about politics, I don't know how it goes and how things like this new treatment comes to the attention of those with the power to argue for funding.

Deb

[susikus]

To answer Simon re forums - I have not participated in but have read other cancer forums, some british and some worldwide. They aren't all specifically pancreatic cancer but one I remember did have a subgroup for pc. But I have seen that there are forums for all sorts of cancers. I just googled and up they came. I read a few that pertained to pc but didn't join in anything as I felt comfortable here.

Good idea Deb to highlight nanoknife at the APPG (All Party Parliamentary Group)

Must write to my mp - is there a sample letter somewhere Deb (or Jeni/Dianne)?

Sue

[susikus]

Just to let you all know that I have today received the answer to one of the questions I posed in an earlier post in this thread. Nanoknife is contraindicated for anyone with a metal stent in situ. My husband has two metal stents - one in the duodenum and one in the common bile duct - my understanding is that metal stents are better for chemotherapy. Not sure what the alternatives are as this was never discussed with us. We are seeing the consultant on Wednesday so I will ask. I have no idea whether stents are easily removed/replaced and whether anyone would do this 'on the NHS' if it was to facilitate private treatment. So many questions...

But only by asking will we find answers. So lets keep asking!

Sue

[DRAD3]

Hi Sue

Do let us know how you get on on Wednesday - will be interesting to hear what Pete's consultant says.

In reply to question about the MP's letter, no template letter - I just made it very personal, explained my situation, the awful stats relating to PC survival rates and how desperately funding was needed and raising awareness etc and how grateful I would be if he could attend the APPG.

I do hope everyone can find the time to do this - it is absolutely vital we start making some noise.

Deb

x

[susikus]

I am sure you don't need to me to tell you that I didn't ask any of the questions that I was going to. I am very interested though in nanoknife because it seems to me to be the only real glimmer of hope of a future treatment pathway that does more than the little on offer today. I am going to write to my MP now. Can I please ask you all to do the same.

Thank you

Sue

[DRAD3]

Please, please everyone try and find five minutes to do this - I know how tough it is but if you go to the WriteToThem website, it does it all for you and you get an email that checks up whether you received a reply. I wrote to my MP directly and did not get a reply but using this website I did. We need to start raising our collective voice - strength in numbers and all that. xxx

[simon]

Hello

I tried the writetothem website (www.writetothem.co.uk)and it is so simple and actually works.

I have been told by the moderator of this site that any new treatment on the NHS takes years to implement. But nevertheless, what has anyone that comes to this site got to lose by just going to the writetothem website and e mailing your MP. Please do it.

Simon

[PCUK Nurse Jeni]

Thanks Simon, Debs and Sue.

This is great and thank you for your encouragement to others to help also.

We need everyone's voice to make an impact.

Kind regards,

Jeni.