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Blog Posts by Ali Stunt

About Ali Stunt

Ali Stunt was diagnosed with pancreatic cancer age 41 in 2007. A 5-year+ survivor, Ali is an outspoken advocate for pancreatic cancer and is determined that more have the outcome she has had.

Pancreatic cancer e-petition reaches it’s target – so what’s next?

e-petition thank youThe petition calling for more funding and awareness for pancreatic cancer ended this morning with over 105,000 signatures.  Thank you to everyone who signed, shared and pushed the petition.

Despite attracting only 20,000 signatures in the first six months, so many people have worked hard to push for signatures and, in the last week alone, we have seen over 30,000 people signing.  This is an amazing achievement.

Everyone has worked so hard to get to this stage so it is important we do everything we can to make the parliamentary debate happen.

 

Sadly 100,000 signatures doesn’t automatically mean that it will be debated in Parliament.

We need MPs to come forward and recommend the Backbench Business Committee holds a debate so that hopefully the issues surrounding pancreatic cancer: survival rates not improved in over 40 years and pitiful levels of cancer research funding relative to the disease burden,  will get discussed formally in the House of Commons. The process by which this happens is explained in the Backbench-Business-Committee-and-e-Petitions flowchart (click the link to download).

So, again, we are asking for your help!

Can we please ask that you write a letter to your MP as soon as possible asking them to help us ensure the debate happens. We have created a template letter for you to adapt and use if you wish,  which can be downloaded here: MP-template-letter Petition

If you are unsure who to write to, find your MP here.

It’s important that we get as many MPs as possible to support this.

Thank you for your help!

Just 5 days to go!

With just 5 days left of the e-petition we still need everyone’s help to reach the 100,000 signature goal.

Please share these posters anywhere and everywhere you possibly can!

Also don’t forget that you can use our e-mail template to send out to your friends.
The last few days the petition has been trending at 100-300 an hour, which is great. We need to keep this up and soon enough we will have the 22,000 signatures we need.

Thank you x
Keep thinking purple for kerry harvey without bleed

 

QR code petition

Information Standard Audit

Booklet 1 imageWe are delighted to report that we have passed another Information Standard audit with flying colours! In fact there were no issues found in any of the areas we were assessed on and scored green (the top mark) every time.

This is not a mean feat as the Information Standard is a rigorous scheme under which we need to demonstrate we have the policies and procedures in place to ensure that our public health information is up-to-date, evidence-based, unbiased and trustworthy.

Our new patient information booklets have been produced under the Information Standard scheme and are available to order free of charge for the general public in the UK and also we will send out to hospitals and medical information centres. For overseas orders, please call us on 0303 040 1770 for a shipping quote.information-standard-member-logo-positive_full

Booklets in the series include:

Understanding Pancreatic Cancer Booklet 1: What is pancreatic cancer and how is it diagnosed?

Understanding Pancreatic Cancer Booklet 2: Surgery for operable pancreatic cancer.

Understanding Pancreatic Cancer Booklet 3: Treatments for controlling the symptoms of pancreatic cancer

Click on the link for more information on the pancreatic cancer information booklets currently available.

To order yours, complete the form below.

Pancreatic Cancer Action publications order form

Our pancreatic cancer patient information publications have been certified under the Information Standard. We will supply these free of charge to addresses in the UK. Outside the UK please call +44(0)303 040 1770 or email enquiries@panact.org for a shipping quote. Please be aware that all statistics and healthcare information relates to the UK.
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Why Abraxane® for pancreatic cancer should be included in the Cancer Drugs Fund

Last evening I attended a dinner at the House of Commons at the request of Eric Ollerenshaw MP, the Secretary of the All Party Parliamentary Group on Pancreatic Cancer. Along with me were interested parliamentarians, specialist clinicians, pharmaceutical representatives and charity representatives.  Dr. Sean Duffy, National Clinical Director for Cancer Services, NHS England was also in attendance.

We were there to discuss not only the issues surrounding pancreatic cancer in general, including the need for earlier diagnosis and increased research funding, but also to explore the lack of novel treatments for the disease.

Nab-paclitaxel

Abraxane, owned by Celgene, takes paclitaxel and binds it to a globular protein, named albumin. The albumin serves as a delivery vehicle, improving the transportation of the drug to the target cancer sites.

Abraxane® was licensed for use in patients in the USA at the end of last year and in Europe earlier this month. This followed recently published data from the IMPACT clinical trial which showed that Abraxane®, in combination with gemcitabine, can extend a patient’s life by an average of 2.1 months, although in some patients it was shown to be significantly longer – up to 2-3 years.

On the face of it 2.1 months doesn’t sound like much, but for patients who on average face only a 4-6 month life expectancy on diagnosis, this can be a big deal.

However, it is not the extra two months that is important here. Let’s not forget, the 2.1 months is an average figure – a closer look at the data will show that there are some patients who have lived more than 2 years on this trial with metastatic pancreatic cancer (cancer that’s spread to other parts of the body) using this regimen, doubling the number of patients who live two years or more (in comparison to those receiving gemcitabine alone). That is the potential hope this drug combination can give patients.

Chronic underfunding for pancreatic cancer research has meant that there has been no newly licensed drug for use in pancreatic cancer over the past 17 years.

There has however, been a triplet combination of drugs that has recently been shown to be effective in metastatic pancreatic cancer called FOLFORINOX. These are not new drugs but drugs that have been available for many years. And while this regimen on the face of it gives hope, the side effects are extremely toxic, so only those patients who are very fit and well can tolerate it making it available for only a select few.

Abraxane® could allow those whose fitness may not be up to FOLFIRINOX to have an alternative to the standard of care: gemcitabine alone.

Another issue that has always been with the standard treatment ( gemcitabine alone), is that only 10% of patients will respond to the treatment, rendering it next to useless for the majority. We have seen from the trial data and from anecdotal evidence from oncologists that far more people respond to Abraxane® in combination with gemcitabine, offering the hope that this treatment could really have an impact on improved survival.

The UK now has a license in the UK for the use of Abraxane® in combination with gemcitabine for advanced pancreatic cancer. However, it is currently only available for private patients. Why is that? Well, it is because the process involved in getting new drugs approved for use in the NHS involves a lengthy consultation process with the National Institute for Health and Care Excellence (NICE). A decision on the use of Abraxane® for pancreatic cancer may not be made until the end of 2014.

In the meantime, NHS patients – which make up the majority of pancreatic cancer sufferers – will be denied access to Abraxane® unless the Cancer Drugs Fund includes it in its list.

The hearing for CDF inclusion is on March 6th. I will be there to represent patients now and in the future and I strongly urge the CDF Committee who will be making their decision as to whether they will fund Abraxane® for pancreatic cancer patients to listen to our arguments and include it in the list.

 

Ali Stunt

Founder & Chief Executive

Pancreatic Cancer Action

Latest official statement from Ali Stunt at Pancreatic Cancer Action

It has been an unbelievable week of mixed emotions for all us at Pancreatic Cancer Action. When we devised the idea of the advertisement, based on my own experience as a pancreatic cancer patient and the other sufferers I speak to, we knew that it would create some noise but we also knew it was what we needed to do to ultimately create awareness of a cancer that currently has a shockingly low survival rate of only three per cent. This has not changed in 40 years.

Millions of people are now aware that weren’t a week ago. And they’re now becoming aware of the symptoms. We have seen in the last few days an astonishing uplift in web views and a spike in views of our symptoms page. Our aim is to save lives and that is done by early diagnosis, which can only be achieved if people know what to look for.

We are hearing lots of feedback from other cancer sufferers who are very upset by the campaign. We can only apologise for any hurt that the advert might cause them at first glance. This is not the intention. What we are trying to do is create a discussion and a debate to make people realise that when faced with a pancreatic cancer diagnosis and a survival rate of only three per cent, it is not unreasonable for a cancer patient to wish for a significantly better chance of staying alive.

We have also heard from many other non-pancreatic cancer sufferers, many of whom are suffering from other forms of cancer, who support our campaign and have done so publicly on the TV and radio this week.

I believe we’re all campaigning for the same cause – to improve everyone’s chance of beating cancer. We just had to shout that little bit louder to get heard.