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Dandygal76
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Dandygal76

PCUK Nurses... is it me or am I the only one that does not see the trial drugs translate into treatment options? No one comes on here saying I am on Gem and abx or Forifirnox plus the latest new treatment? For instance..

http://www.univadis.co.uk/viewarticle/metastatic-pancreatic-cancer-second-line-therapy-extends-survival-after-nab-paclitaxel-gemcitabine-421996

I would just like to know if anything is actually filtering through or will filter through to the front line.

This is not me being defeatist, but it is interesting nothing seems to come out in the wash in terms of new treatments.

What is available outside of the chemo norm (is anything?).. drug wise (we have the nanoknife in hand as you know.)

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WifeampMum

Hi DG


The following extract from Biopharmaceutical Research & Development: The Process Behind New Medicines. (PhRMA) is depressing but illuminating:


"The rapid pace of scientific advances is enabling a greater understanding of diseases at the molecular level. In turn, scientific, technical, and regulatory challenges related to drug development create complexities as companies often focus their R&D where the science is difficult and the failure risks are higher.

As a result, the process for researching and developing new medicines is growing in difficulty and length. On average, it takes at least ten years for a new medicine to complete the journey from initial discovery to the marketplace, with clinical trials alone taking six to seven years on average. The average cost to research and develop each successful drug is estimated to be $2.6 billion. This number incorporates the cost of failures – of the thousands and sometimes millions of compounds that may be screened and assessed early in the R&D process, only a few of which will ultimately receive approval. The overall probability of clinical success (the likelihood that a drug entering clinical testing will eventually be approved) is estimated to be less than 12%."


Biopharmaceutical Research & Development:

The Process Behind New Medicines.

http://www.phrma.org/sites/default/files/pdf/rd_brochure_022307.pdf


Also there are funding issues e.g. NHS England has decided that funding Abraxane isn't cost effective.


BTW your link doesn't refer to new drugs. "Fluoropyrimidine-containing treatment" = 5FU and Capecitabine.


W&M xx

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It's my understanding that with exceptionally successful new drugs they are fast tracked so it does not take so long. I think there was one for lung cancer recently but I have been unable to find the info.

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WifeampMum

And there are other ways that the route to market might be quicker. For example, re CXCR2 blocking treatments (mentioned recently in the treatments thread http://forum.pancreaticcancer.org.uk/viewtopic.php?f=2&t=1774):


"The good news is that clinical trials for cancer are already on the horizon. Various CXCR2-blocking drugs are already in late-phase clinical testing for inflammatory diseases like pancreatitis and lung disease, so doctors already know they are broadly safe and how best to give them to patients."

Dr. Jennifer Morton

http://www.medicalnewstoday.com/articles/310728.php


As is often the case, the average is not great but the exceptions can give us cause for hope.

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Dandygal76

I cannot find the original link now but the principle is the same... There are a lot of trials going on around the world but I see no new treatment options for people. I know trials are important (and there are stage III trials for metastatic disease so there is promise) but... is anything actually in the pipeline from these?


I get what you are saying W&M but there have been trials for a long time... how long from a stage III trial to it actually becoming available? Didge - I read that fast track drug story as well - you would hope if something is exceptionally good they would not be bureaucratic about it. I believe new legislation also lets them be a bit more imaginative and experimental when people with advanced disease who have nothing to lose.


I am interested on the whole what the medical professions take is on this. I keep saying to my family... don't look into the abyss, let's get two years and see what are options are then. We are all just focused on achieving 2 years and that works for them all tremendously. But, in 2 years do the PCUK nurses think other options will open up? I know it is an art as well as a science and no one can predict exactly what will happen but being in the industry... do you have a 'feel' for this or is it just a self perpetuating subject that comes up on forums with little fruition.

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This is an interesting debate and I certainly don't have any expertise on the subject. However, I think that the link W&M posted yesterday about the way new compounds are tested is very interesting. It is amazing how many compounds need to be tested before useful ones are identified.

Catherine

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WifeampMum

Brain dump warning!:


According to this 'PC drug pipeline update'

http://www.businesswire.com/news/home/20160302005667/en/Pancreatic-Cancer-Drug-Pipeline-Update-2016


There are currently 367 companies plus partners developing 406 drugs targeting pancreatic cancer, and 263 are in trial. If 10% reach market that's 26 new drugs, which to my mind sounds pretty hopeful.


25 are in phase III testing which again sounds pretty good.


My understanding of why there aren't more new drugs around currently is that 10 years ago there was far less research into PC and therefore far few trials.


I think a very big issue with some of these new treatments will be affordability / cost vs benefit.


W&M xx

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PCUK Nurse Jeni

Hi Dandygal,


Thanks for this post once again raising a complex question!


And thanks once again to W&M for her research on this issue.


From the "bench to the bedside" - I think this is what we are talking about here, and agreed, this is a long process, and often, governed by strict Research & Development guidelines in the first instance. Having been involved in many trials over the years, across a variety of tumour sites, it takes so long for the results of this to actually translate into "the bedside".


Medicines have to go through all the phases before being accepted into clinical practice - the setting up of clinical trials in itself is an absolute challenge, and can sometimes even take a matter of years to get a trial open and up & running on the ground - very frustrating. Most trials recruit for 12-24 months, however, some for longer than this, then there are things like close out visits, data cleansing and lots and lots of statistical analysis before a result can even be released. In some ways, you know if you work on a trial, you expect it to be 10 years at least before you know you will see the medicine in the clinical setting.


Sometimes then, you get positive results, only to have to write the next phase study protocol, when really, all we want to know is "when can we start using this drug?" - this is the case of the IMM-101 vaccine (Immudulon study) which was presented at ASCO in January of this year, only to be recommended for a larger phase 111 study, when actually, the results were conclusive of itself.

In some ways, Pharma also drive this, the FDA and other factors.


When the results of the Folfirinox study were presented around 4 years ago now (roughly - cant remember precise dates), it took about a year at least for the results to be acknowledged in the UK, and its only really in the past 2 years that people have been getting Folfirinox over Gemcitabine where they are fit enough for it - and these drugs were already in existence and being used in cancer care in the UK. Again, interpretation of study results can vary from person to person - there needs to be a standardised protocol, per say.


Not sure if this helps, and can't match W&M's links. But, I think Immunotherapy seems to be the way of the future, so lets hope there are some good breakthroughs which can't be delayed getting to the bedside.


Kind regards,


Jeni,

Specialist nurse,

Support Team.

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WifeampMum

It's got to be noted here that PC sufferers are being let down badly by the NHS. This is confirmed in the report of a 2015 parliamentary investigation into PC care:


"Pancreatic Cancer Care and Research: A health check” APPG Dec 2015


http://www.pancanappg.org.uk/wp-content/uploads/2015/12/Pancreatic-Cancer-Care-and-Research-A-health-check.pdf


Too much of the report makes disturbing and depressing reading for anyone suffering from or caring for a loved one with PC. Progress in getting new treatments to people who are in desperate need is dire, especially in England. This is made very clear in the report:


----------------------------

Page 17


"There remains very few treatments available to pancreatic cancer patients. A focus on addressing this unmet need by ensuring potential new advances are appraised and made available on the NHS as quickly as possible is still required.


We were extremely concerned at the decision announced in September 2015 by the Cancer Drugs Fund to remove Abraxane from its list of approved drugs as of 4th November 2015. This represents a huge backwards step in terms of access to treatment for patients since the APPG produced its reports. It also has the potential to threaten the status of clinical trials in the UK which are based

on Abraxane.


Moreover, the removal of the 1st new drug for pancreatic cancer in nearly 20 years from the CDF, alongside NICE’s decision not to recommend Abraxane for approval, demonstrates how the drug/ technology appraisal system continues to fail pancreatic cancer patients. It is vital that any new treatments coming through for cancers with the poorest survival rates, like pancreatic cancer, are prioritised. "


----------------------

Page 18


"The Commissioning through Evaluation programme has not made available advanced radiotherapy techniques for pancreatic cancer, despite the scheme including SABR for other cancers. Likewise, IRE treatment for pancreatic cancer has not been progressed. In addition, we remain concerned that the Human Genome project still does not include pancreatic cancer as one of the priority conditions. This lack of progress highlights the need to ensure the prioritisation of research and new schemes on cancers of unmet need. "


This makes me so cross.


W&M xx

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PCUK Nurse Rachel C

Thank you all for your comments and input on this topic,


Again, these are very important points that have been raised and we as a charity are working hard to try and address some of these issues.


Wife and Mum very kindly posted to link to the report "Pancreatic Cancer Care and Research: A health check” APPG Dec 2015 and for those of you that may not be aware, Pancreatic Cancer UK acts as the secretariat for the group.


The All Party Parliamentary Group on Pancreatic Cancer (APPG) was originally formed in May 2012 by a cross party group of Parliamentarians who want to see improved survival rates and better patient experience for all those affected by the disease. The intention of the group is to keep pancreatic cancer high on the political agenda, for example through debates and oral and written questions. If you want to see more about the APPG, please do access the link below:


http://www.pancreaticcancer.org.uk/policy-and-campaigning/campaigning/parliamentary-activity/appg-on-pancreatic-cancer/


In relation to some of the points raised around the lack of access to new treatments/ drugs and the process in place, we have just released a policy call ‘Unlocking more trials for the future-How to improve clinical trials for pancreatic cancer’ – see link below:


http://www.pancreaticcancer.org.uk/media/807232/key-to-survival-campiagn-goal-3.pdf


This briefing sets out our policy calls and our commitment to ensuring that change will happen in the field of clinical trials for pancreatic cancer patients.


Of most interest, please do look at point 4- which calls for the patient voice in pancreatic cancer research to be louder!


I do apologise, as I have gone off on a little bit of a policy and campaigning slant, (if you do want to know more about what we are up to, please do look at the Policy & Campaigning section of the website) but I just want to reassure you that we, as a charity are trying to address some of these points so that patients with pancreatic cancer, have better access to more, newer and possibly better treatment options!


I also just wanted to give you a ray of hope for the future!


I’ll also ask our Head of Research, if she has any comments on the thread, however, it may early next week before she can get back to us so will keep you update.


Do keep the comments coming!


Best wishes,


Rachel


Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

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WifeampMum

Thanks Jeni, Rachel and indeed everyone working for PCUK, for championing the PC cause. I'm very aware that without your tremendous efforts we would be in a far worse place.


W&M

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Dandygal76

I will read through all the links later and respond further. I may be interested in advocating on behalf of patients if there is room for that. Combined with Dad being on Abraxine, being on a trial, getting nanoknife and then the profiling I am hoping we might have something to advocate for if it does all work out to dad's advantage.

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Hi Dandygal

I'd just like to pick up on something you mentioned on Ruth's thread about under funding of PC research and drugs. Just over two years ago I had little knowledge of cancer at all despite the fact that my father and uncle had died of cancer but that was over fifteen years ago and things were different then. Just about this time two years ago I was diagnosed with breast cancer. It was slightly complicated which I will not bore you with but it just highlighted my terrible ignorance of cancer. I think there is more knowledge about breast cancer and now prostate cancer because they are more prevalent than other cancers. Then just over a year ago I leaned about pancreatic cancer. The APPG may have highlighted areas where NHS England could do more but I think that in itself is a success story. The fact that politicians from all parties will join together to 'promote' issues on pancreatic cancer is terrific. Also the work done on clinical trials by PCUK is great. So thanks for all you do in PCUK.

Catherine

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WifeampMum

My resolution for today is to convert my crossness about the current situation into action for improving things. I'm going to start by writing to my MP.

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Dandygal76

Hi Catherine


I hope my post did not cause offence. My swipe was at the drug companies and did not mean to ignore all of the other great institutions and individuals that do so much to take PC issues forwards and to try and encourage and fund trials. I think though the vast majority of funding is still with the drug companies and have been historically, unless that is my ignorance.


PCUK etc do a great job. I have also been rushing my posts around a very busy day so if anything has come across wrong then I do apologise. I can be a tad forthright at times even when I am not rushing!


x

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Thank you for all of your responses. W&M they were some great links and I must admit I have been quite naive as to what actually goes into this process. I think what I find frustrating from reading all of the responses is that at stage II it does appear there are some promising outcomes. However what seems to be missing from my point of view is something similar to the Medical Innovations Bill where a different approach can be taken and stage II promising drugs being made available to those who are out of options and just want to take a chance. I know that NICE would be a massive obstacle to this as well. People with PC do not care what is coming out in 5 years time (well for themselves - obviously everyone wants to see future patients beat this), they want a chance to look at the stage II research and have a go at something that may help on top of NHS chemo. This will also become more evident as tumour profiling comes in. How frustrating will it be if I get dads tumour profiled and I can see a great stage II drug out there that we cannot touch. Not dissimilar I suppose to all those that have had Forfirinox which is no longer working and cannot access Abraxine. If the insurance companies can manage to fund Abraxine and Wales and Scotland then what is going on. I am just frustrated a little I suppose.


Catherine I am so sorry you have also had to deal with your own breast cancer as well - such a blow to be dealing with that and then your husband with PC. I have only this experience of cancer - it has never touched my life personally. My nan died of it but I was 1. It has been a huge a eye opening and a huge learning curve for me. I am forthright and I put this stuff out the way I do to keep testing the water for a way forwards for dad, just nudge me back if I step over the mark. I will convert this into action like W&M and now dad is quite stable and feeling better it is probably the time.


I believe in the power of people... the more people that write and raise awareness the more PC will come to the fore in decision making where it counts.


W&M I would love an update on any response from you MP. Are you inviting him to attend the APPG? I may pop along to one of the committee meetings and see what is what. x

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Hi Dandygirl

I wasn't in any way offended by your post.


You mention funding for Abraxane in Scotland and ?Wales. I'm not an expert on this but my understanding is that NICE did not approve funding for Abraxane for PC patients in England. However, for some time it was funded by the Cancer Drugs Fund but this is now withdrawn. In Scotland and Wales it is different regulating bodies and they have approved it. Rather unfair you may say but there are other treatments for other diseases which are not approved in Scotland - which is where I am.


One of the problems with PC seems to be, if I have read what the nurses have written, it's complexity so that research is still not as successful as with other cancers?


Like everyone else here I hope for a cure to be found sooner rather than later.

Catherine

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Hi DG,


I agree that the Medical Innovations Bill sounds like a good way forward. [i'd not heard of it before Didge gave the heads up - thanks Didge! ]. But it will probably come too late for many who might benefit from it.


Tumour profiling - I came across a new website/service yesterday:

PRECISION-Panc

"The overall aim of PRECISION-Panc is to speed up scientific discovery in order to improve the survival rates of patients with pancreatic cancer."

http://www.precisionpanc.org/


....it may be of use. I've just contacted them for more info. PCUK is a partner. They're based in Scotland.


Writing to my MP - Hubby and I are away at the moment but we've decided that instead of writing we would see our MP at one of his surgeries. I'll post once we've done this. I've also been thinking of attending an APPG meeting with hubby.


As they say in the USA: NEGU (Never Ever Give Up)


xx

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If you want tumour profiling, this is where my research has led me... http://foundationone.com/


PCUK gave me a different company (not based on their own recommendations but because they know a PC patient managed to get his tumour profile done there) but I have had many discussions with American PC friends and this place is $6000 cheaper and produces better reports and more markers identified. Some had used both companies.


As I have stated on my PC facebook page.... "You need to remember though that this is my own research and discussions with people. Please do your own research and due diligence because I am no medical expert. It is sometimes like the blind leading the blind trying to untangle all the options. With the 'right' mutations they have found breast cancer drugs etc that can help but there are no guarantees."

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Just read the APPG Pancreatic Research report and this is shocking!....


In particular, the Department of Health needs to review its own contribution to pancreatic

cancer research, increasing substantially its current contribution of just £0.7 million, looking to at

least match Cancer Research UK’s stated goal of doubling or trebling its annual investment in the

next spending round.


700k - that is nothing.

Edited by Dandygal76
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W&M I am going to FOI the minutes of the APPG. I think it would be an interesting read and will copy them and send if you want them. Just ask PCUK for my e-mail address.

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DG, I think the minutes are already in the public domain so no need to FOI them.

I'll check and post the link here if I'm correct.

W&M xx

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