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PCUK Nurse Jeni

Good morning everyone!


Welcome to our Q&A session from 10am -4pm today.


My name is Jeni. I moved to the UK from Ireland, in 2000. I have been working on the support service since 2010. Prior to this I worked in a busy chemotherapy unit in the East Midlands, for 9 years, covering most forms of cancers, including haematology. I also did 4 years as a clinical trials nurse, which is where I became familiar with pancreatic cancer.


It has been such a learning curve to streamline knowledge to a particular cancer, and I find that most days, we draw on our wider nursing knowledge. I am constantly learning things, and understanding them in a more in-depth way.


Outside of work, I am very involved in my church, love walking with my Whippet, Alfie, and spend most weekends helping look after my 2 year old grandson, who is the light of my life!


Today is International Clinical Trials day! It is also the day where we launch our new Clinical Trial Finder, and we are very excited about this new tool, which will help folk find a clinical trial suitable for their situation.


I look forward to answering your questions!


Jeni Jones.

Pancreatic Cancer Specialist Nurse,

Support Team.

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WifeampMum

Good morning Jeni, and thank you PCUK for providing this Q&A session and for your new trial finder tool!


My question is:

Are some trials only available privately? For example the trial 'CARRIE' which is testing the new drug MM-141... I can't find this listed on the CRUK list of trials but I'm aware that the father of one of the Forum members is on this trial with a renowned oncologist in Harley St.


Thanks

W&M

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PCUK Nurse Jeni

Hi Wife & Mum,


Thanks for your question, and for being the first to post!


I have had a look for this trial on one of our most used sites, an extremely reliable source of information concerning all clinical trials - clinicaltrials.gov, and in fact, this is not even listed as being open in the UK! So, certainly unsure about why this is the case. Neither is it listed on the UK Clinical Trails Gateway portfolio (previously NIHR portfolio).


Many oncologists also practice privately as well, so it looks like they can introduce certain trials in private practice which might not otherwise be available. However, whether on the NHS or in private practice, all trials are regulated, to ensure they are conducted in line with good clinical practice (GCP).


Jeni.

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Hi Jeni,


Could I ask how I would find out more information about clinical trials? If you have cancer which can’t be removed by surgery, what would be the best way of looking in to the most suitable trials?


Thanks, F

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PCUK Nurse Jeni

Hi Frank, and thank you for joining us!


Well, there are a number of ways to find out more about clinical trials.


First and foremost, it is worth discussing with your oncologist/consultant at your hospital whether there are any clinical trials running there which would be suitable for you. If there are not, then they may still be aware of trials which are recruiting at other hospitals which they could refer you to.


You can also search yourself using our new Clinical Trials finder - here is the link for this:


http://bit.ly/1ODiBsG


This can prove very useful prior to your consultation, as it allows you to find out about clinical trials running across the UK, and you can take along the information you find from this for discussion at the consultation. You may also feel this gives you the ability to have some "information at your fingertips", so to speak, which may/may not be available within the hospital setting - so not only are you informed, you are able to pass on this information to your care team.


The trial finder also allows you to select trials for cancer which is inoperable, so rather than you having to do the "work" of sifting through a list, this does it for you, by separating them into operable and inoperable trials - so much easier to see what you might be able to go into.


However, I have to also stress here that even if you find a trial for inoperable cancer, you still need to have this discussion with the consultant/trials nurse, who will explain the inclusion and exclusion criteria to you. This criteria instructs those running clinical trials about what is needed prior to trial entry, or what is not allowed. For example, it could mean that because of the potential side effects of one or more of the drugs, that if you have previously had heart issues (ie: heart attack), that you would be excluded from that study, even though at first glance it might have looked suitable for you. You will also need to fulfil other criteria - and every trial has its own "list".


Hope this helps Frank?


Kind regards,

Jeni.


Pancreatic Cancer Specialist nurse,


Support Team.

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Hi Jeni,

Are you aware of any current trials in respect Nanoknife for pancreatic cancer. I understand that whilst it's been used for a while on other cancers, the evidence for its success on PC is still in its infancy. Hence I would be interested to understand where any evaluations / trials are being undertaken.

Regards Kevin

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PCUK Nurse Jeni

Hi Kevin,


Sincere apologies, but I have just lost the entire post I had written!!!!


And it was summed up by saying sorry this has taken so long, but I needed to go over my Nanoknife information and recap before I answered you.


I shall now try and recollect what I had written, and post again.


Sincere apologies,


Jeni.


Pancreatic Cancer Specialist Nurse,


Support Team.

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PCUK Nurse Jeni

Hi Again Kevin,


Thanks for your question on Nanoknife.


Most of the trials we have had to date in relation to this information have come from Professor Robert Martin, in the States. The first trials were in 2009, and he also used the technique intra-operatively.


When this treatment was appraised in the UK by NICE, they advised that it was to be used in pancreatic cancer in the context of clinical trials only.


In 2013, a national user group was set up, with the intention of compiling a registry of patients who had this treatment, with a view to having up to date information going forward. The key objective of the User Group registry is to collect safety data (which is what NICE identified as being missing to date), but it would not provide conclusions about efficacy of the treatment.


This group is still live, and data is still being collected retrospectively and prospectively. Its also involved in sharing best practice, as is the case with most user groups. Going forward, once they have sufficient data, it should be used to present to NICE again, in the hope that this treatment would be adapted and accepted as another viable option for the use in the treatment of pancreatic cancer.


To date, there has not been a clinical trial run in the UK with regard to Nanoknife, nor are there any plans for such a trial, to the best of my knowledge.


Sorry Kevin - I accept this may not be the entirety of the previous post! (which I lost), but hopefully, it is a brief update as to where this is "up to" in the UK.


Kind regards,


Jeni.


Pancreatic Cancer Specialist Nurse,


Support Team.

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PCUK Nurse Jeni

Thanks to everyone who joined us for our Ask the Nurse Clinical trials session!


Have a wonderful weekend.


Jeni.

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