WifeampMum Posted October 22, 2016 Posted October 22, 2016 Hi allNICE is currently reviewing Irreversible electroporation (Nanoknife) and has just issued a consultation document about its safety and efficacy. https://www.nice.org.uk/guidance/GID-IPG10024/documents/interventional-procedure-consultation-documentThere is now a four week public consultation (until 5 pm, Monday 21 November 2016).The document's first draft recommendation is:"Current evidence on the safety and efficacy of irreversible electroporation for treating pancreatic cancer is inadequate in quantity and quality. Therefore, this procedure should only be used in the context of research." My feeling is this is sad but not unexpected considering the scarcity of hard evidence of its efficacy. This hasn't changed my mind about contacting the Prof if hubby gets a recurrence but it looks like time has run out for the Prof's good results to influence this consultation and therefore the availability of Nanoknife on the NHS. (Dandy, please correct me if I'm wrong but I don't think he's published yet). Presumably any member of the public can comment on the draft recommendations as long as they do so before 5 pm, 21 Nov.W&M
Dandygal76 Posted October 22, 2016 Posted October 22, 2016 W&M we have seen JED on here who has had an amazing response to the Abraxane. He may not have had that with Folfirinox but yet the NHS will not licence it. If the NHS devolved control of this to the hospitals I think we would have far better outcomes. The whole of the public sector seems to be moving to devolved services except the NHS. I reiterate again, they will not get a research context to this... there is no money in it. Why would you fund a professional trial with no financial outcome. It needs to come from Govt or one of the charities.The lobbying in this area is disappointing. I will send the link though to prof . xx
WifeampMum Posted October 22, 2016 Author Posted October 22, 2016 DG, thanks for passing on the link though I'm sure he must be aware of the consultation. His work is even referred to in the documentation (in the specialist advice questionnaires doc here: https://www.nice.org.uk/guidance/GID-IPG10024/documents/specialist-advice-questionnaires).Abraxane is being reviewed by NICE at the moment, I pray that they will change their minds 'cos I also think it could be a game-changer.There's a randomised trial on Nanoknife starting up in the U.K. for those with locally advanced PC. They are looking to recruit 150 patients. I found this out from the APPG meeting that I attended on 14 Sept.
Guest Posted October 23, 2016 Posted October 23, 2016 I'm not a researcher but I believe there is an NHS trial running in Leeds the data from which has to be published under NHS rules and the much mentioned professor has Declined to publish his results despite having a large enough data baseto do so. This is not to say that this proceedure does not have a place, we know that with other cancers it is has well documented positive effects. Maybe if professor and others were to publish their results there would be more encouragement for the NHS to take it up. M xx
WifeampMum Posted October 23, 2016 Author Posted October 23, 2016 Marmalade, I think so too. I hope you enjoyed your time away with your friend. W&M xx
Dandygal76 Posted October 23, 2016 Posted October 23, 2016 That is interesting to hear Marmalade.. last I heard from him it was being peer reviewed. It is a bit of a niche market he has created there as well with stage IV PC. It would be a great shame if he did not publish results... whether it works, whether it doesn't, whether if you are lucky it might... it would be nice to have clarity of the data and he has treated hundreds of patients. I hold out that I do not believe this dr or the hospital under their professional ethics could be giving out a treatment known not to work and to be purporting otherwise. I was going to e-mail him this eve around some queries for dad and so I may just ask him where his paper is.
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