Pancreatic Cancer Action

Life-extending pancreatic cancer drug finally wins NICE approval

The latest news from Pancreatic Cancer Action:-

“We are absolutely delighted to announce that NICE has given the green light to Abraxane®, a drug that can extend the lives of pancreatic cancer patients. This means that patients in England, who represent 83% of pancreatic cancer patients in the UK, will now be able to have access to the drug.

Trials have shown 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. The drug was has previously been rejected by the NHS’ health drugs rationing body.

“It is wonderful to learn that Abraxane®, a drug that can give so many patients and families extra time, has finally been made available to pancreatic cancer patients via NHS,” says Ali Stunt, founder and chief executive at Pancreatic Cancer Action.

Pancreatic Cancer Action took a leading role in campaigning for the drug to be approved, including a demonstration outside Public Health England in 2015, and highlighting the issues in the media.

Dr Stephen Falk, Consultant Clinical Oncologist, University Hospitals Bristol NHS Trust and Chair of
the NCRI Pancreatic Cancer Subgroup comments: “Today’s recommendation is welcomed by the clinical community as well as families affected by metastatic pancreatic cancer – this is a disease that has seen few therapeutic advances in recent years and life expectancy remains extremely poor. It is very reassuring that NICE has decided to recommend nab-Paclitaxel in combination with gemcitabine for the treatment of metastatic
pancreatic cancer, and I also welcome the potential of extra survival this regimen
may offer to the right patient compared to gemcitabine alone.”

The treatment of pancreatic cancer remains an area of unmet need, with around 8 in 10 cases diagnosed at a late stage in England and Scotland. Survival rates have shown minimal improvement over the past 40 years and the disease has one of the worst five-year survival rates of common cancers in England and Wales. In the 1970s, 1% of people diagnosed with pancreatic cancer survived their disease beyond ten years, today it is still approximately 1%.

Every day in the UK there are approximately 26 new diagnoses of pancreatic cancer, as well as an estimated 24 deaths due to this disease.

Ali Stunt, Founder and CEO of Pancreatic Cancer Action, adds: “With an average life expectancy of
just two to six months post diagnosis, potentially life-extending treatment options are invaluable
for people with metastatic pancreatic cancer. NICE’s decision to expand available treatment
options will be welcomed by those patients and their families. We are pleased that Celgene, the
patient community and NICE have worked together to reach this positive outcome for patients.”

Results from the Phase III MPACT (Metastatic Pancreatic Adenocarcinoma Clinical Trial)
demonstrated an increase in median overall survival of 1.8 months with nab-Paclitaxel in
combination with gemcitabine, when compared to gemcitabine alone in first-line treatment of
mPDAC [median overall survival (8.5 months vs. 6.7 months, respectively) (Hazard Ratio for death 0.72; 95% Confidence Interval 0.62 to 0.83; P<0.001)].6 A post-hoc updated overall survival analysis with an additional eight-month data cut-off confirms the results seen in the Phase III MPACT trial.

Remo Gujer, General Manager at Celgene UK & Ireland comments: “We are pleased to have been
able to work with NICE throughout this process to help ensure that this treatment combination
becomes accessible via the NHS to eligible patients with metastatic pancreatic cancer across
England. This is an important milestone in our journey in the fight against pancreatic cancer and
we will continue our research in this area of considerable unmet need”.

Advertisements

New Recipe Book from Pancreatic Cancer Action

The latest news from Pancreatic cancer action:-

“Pancreatic Cancer Action has launched a recipe book to help alleviate one of the key side effects of pancreatic cancer: the inability to maintain weight and a nutritional balance. The book was developed by University College Cork and is available to patients, carers, hospitals, pancreatic cancer specialist centres and cancer support facilities to order free of charge from Pancreatic Cancer Action.

Pancreatic cancer affects a patient’s ability to digest and absorb vital nutrients from food, which can cause pain, changes in bowel habit, decreased appetite and nausea. These symptoms can put patients at risk of suffering from malnutrition.

Ali Stunt, chief executive of Pancreatic Cancer Action, said: “Good nutrition is a crucial part of any pancreatic cancer treatment programme, as so often the symptoms of the disease and side effects of treatment can make eating a real struggle.”

Nourishing your Body during pancreatic cancer treatment features over 80 recipes, which, using scientific evidence, have been developed by dietitians and chefs so that they are nutritious and can be easily tolerated.

Author Aoife Ryan, who is a dietitian at University College Cork in Ireland, said: “Our team of oncology dietitians and chefs, have worked hard over the last year to translate the nutritional advice for people with pancreatic cancer that are losing weight into simple, nourishing and enjoyable meal ideas.“

The production and distribution of the book is courtesy of a grant from the Rosenfield Family. Ali says: “I’d like to say thank you to the Rosenfield family who kindly sponsored the book in memory of Kim Rosenfield, who sadly passed away from pancreatic cancer last year.”

If you are interested in ordering a copy, you can visit http://www.pancreaticanceraction.org, call 0303 040 1770 or e-mail enquiries@panact.org.”

Confidence in 1,000 miles

Like many things in life confidence is only found through practice. Just knowing that what ever I do repeatedly will get easier, keeps me going. Whether that be making a skirt or cycling, in both cases practice improves skill, understanding and technique, and with this comes confidence.

When I first got on a road bike in May, I was partly terrified and partly exhilarated. There was such a sense of freedom of being able to cycle at a moderate speed. But, for me there is an additional anxiety of about falling off, not that I just don’t want to injure myself, but also not having a spleen, means fighting infection and recovering from illness and injury takes longer.

But now that I have been cycling for oooooh almost 4 whole months, I can see how my confidence has built, firstly it was all about the bike. Things like getting used to the gears, I often ran out of gears going uphill, no idea how I managed to do that, but I did.

Next it was the shoes, most road cyclists used clipless shoes, which ironically clip on to the pedal, however before the clipless shoes, cyclist used straps which went over the pedal to position the shoes on the pedal for better purchase. I started off with regular pedals and trainers, then added straps to the pedals, then graduated into rigid sole shoes. I still haven’t tried the clipless shoes but am sure I will be in them for next spring.

Flying downhill at speed was fantastic until I learnt that most accident happen going downhill, so I am a bit more cautious now, not much, just enough to balance exhilaration with safety.

Sooner than expected I found myself able to go longer distances, going out on Sundays – working up an appetite and stopping for brunch before returning home – a wonderful way to enjoy the day. Having used Sunday’s to develop stamina for distances I then used my weekly rides to improve my speed. I have been using an app Map My Ride which has been a great motivational tool for me.

Finally I had to work on the hills – it looks so easy when watching Le Tour de France, even the mountain stages. I had no idea how tough it was going up even small inclines, but it’s all about practice and persistence – and so I have kept going until finally I made it up the highest local hill – I would have celebrated when I reached the top, but breathing seemed somewhat more important!

I had never before appreciated road surfaces, there are just to many different types, some are a joy, others soul destroying – in which case it’s usually time for a sharp exit.

So finally after 4 months and 1,000 miles I am ready to cycle from London to Brighton, on Sunday. It will be my longest ride  at 54 miles, but I am feeling confident and ready for the challenge, anyway I have to finish as I am being generously sponsored to raise money for Pancreatic Cancer Action in memory of my Mum, Joanna Roe who died of pancreatic  cancer aged 72.

 

Determination

Having a training plan in place to help get me cycling  from 0 to 54 miles in 16 weeks, has been amazing. Firstly, I don’t have to think or worry about trying to create a plan myself, it’s there done, printed out in black and white and stuck on the wall.

All I have to do now is to follow it, which has been much easier than I thought. That being said, I am not over keen on the stretching exercises. Resting I can do, cycling I can do, but stretching well it all seems a bit half hearted really. So I have had to find ways to inspire myself by reading blogs and articles on the benefits of stretching for cyclists in order to motivate  myself. I found an article on yoga for cyclist which was great, I can relate to yoga but not stretching – it’s different words for basically the same thing. However, my favourite article was:

10 Stretches for Cyclists You Can Do Without Leaving Your Bed

Surprising things have happened too – not knowing what the weather will be like for my London to Brighton cycle, has meant that I have been out in every weather no matter what and that has including torrential rain with streams of water running down the roads and cycling through floods. Not something I would have normally persuaded myself to do, but knowing that I have done it, that I can do it, makes all the difference!

Determination has appeared in another guise too, part of which is competitiveness. I have downloaded an app, MapMyRide, so I can record my routes and times. But, I also get points and times for doing certain local courses, which has motivated me and made me more determined to get out and cycle.

Finally, I am determined because there are those who say I can’t do it – there is nothing like being told you can’t to ensure that you do!!

What makes you determined?

 

 

A new love in my life – cycling

It’s only been a few weeks, 4 actually, but I think I have found a new love in my life – cycling. Having spent a few trips riding hubby’s old Trek racing bike, as opposed to his new beloved Madison Genesis, I realised that I needed my own bike. Unfortunately pain from residual scar tissue means that a road bike is quite literally a stretch too far, so after much research I have invested in a Giant Liv Thrive carbon fibre hybrid bike, which gives me a more upright cycling position. Despite a tiny, but female specific saddle, it’s actually more comfortable than my old “sit up and beg” bike – amazing.

London to Brighton Cycle Ride

Boldness has genius, power and magic in it. Goethe

Or in my case madness…… I have signed up to do the London to Brighton Cycle Ride on the 11 September 2016 to raise money for Pancreatic Cancer Action and Rigpa UK, and I could do with some help so if you are able to do any of the following, that would be wonderful.

a) Join me cycling London to Brighton – it would be great to have some companions along the way http://doitforcharity.com/do-it-for-charity-london-to-brighton-2016.aspx

b) Sponsor me – every donation – every £ helps.

http://www.doitforcharity.com/lovingmypancreas
for Pancreatic Cancer Action.

http://www.doitforcharity.com/SuzanneRoe for Rigpa UK

c) Support me – help me tell other people what I am doing, by liking and sharing this page, following me on Twitter @suzanneroe and retweeting some of my posts.

d) Do all of the above – I may be pushing my luck with this option!! 😀

Many thanks in advance for all your help 🚴🏼