October 2015 Bulletin
Our range of services are available to anyone affected by pancreatic cancer, whatever their needs, and they can complement the care you offer your patients.
Our Support Line
Our national Support Line is staffed by four specialist pancreatic cancer nurses on a daily basis, Monday to Friday, 10am to 4pm. Patients can contact us via our freephone service on 0808 801 0707, or firstname.lastname@example.org. The nurses can offer individual information about pancreatic cancer, treatments options, and managing symptoms and side effects. They have the time to listen, answer questions and provide support.
We have a range of patient information, including diagnosis, treatment, managing symptoms, and living with pancreatic cancer. All our information is based on the latest evidence, reviewed by experts in the field and people affected by pancreatic cancer, and is Information Standard accredited as high quality.
We have recently published a new booklet, Caring for someone with pancreatic cancer: Information for families and carers. Supporting someone with pancreatic cancer can have a big impact on family members, physically, emotionally and financially. This booklet has information that will help, including managing symptoms, accessing practical help, and community support, and coping emotionally. We’ve already had a fantastic response to it from both families and health professionals. "This booklet is an excellent resource with practical information for families, when they really need clear facts. I wish I’d had it when my dad was ill."
We have also updated our booklet, Diet and pancreatic cancer. This is one of our key booklets, and contains information about dietary symptoms, pancreatic enzyme replacement therapy, and how different treatments can impact diet and nutrition. We have included some new information about managing diabetes for pancreatic cancer patients, in response to calls our nurses get from people struggling with this.
You can download and order all our information for free from our website.
Our online forum
We have an online forum for anyone affected by pancreatic cancer to access support, encouragement and comfort from others in a similar situation. This is a very powerful and supportive environment. Our nursing team moderate the forum to ensure that it’s a safe place for our users, and that information that is posted is correct. We also support users in a personal space outside of the forum if we find that people are struggling and would benefit from professional advice. This service continues to be popular, with some longer term friendships made, and some groups continuing this after the loss of their loved ones.
Supporting health professionals is a key part of what we do. We currently provide a secure online Health Professionals Forum, which we are keen to develop. We want the forum to be a useful space to support health professionals working with pancreatic cancer patients. So we want your views about what you would like from it. What would be helpful for you in your work? For example, is there anything we could provide through the forum that would support you? Is there anything you would like to hear about from colleagues? Are there any constraints that would prevent you from using a forum – for example, time or IT barriers? Would it be helpful to hear about Pancreatic Cancer UK’s work? Or latest research?
Any feedback would be extremely useful in helping us make sure we provide what you need. Email us your thoughts to HPNetwork@pancreaticcancer.org.uk
We are continuing our programme of health professional study days across the country. We have recently held study days in conjunction with University Hospitals of Birmingham, Cambridge University Hospitals, Belfast Health and Social Care Trust and just recently held our 13th Annual National Pancreatic study day in Crewe.
You can see the presentations from the days here. (You will need to log into the health professionals’ secure pages on our website.)
We regularly include sessions about diet and nutrition in the context of pancreatic cancer, including pancreatic enzyme replacement therapy. Comments from the audience often suggest that this is an area that still causes confusion in patients and clinicians, and that greater awareness is needed – mirroring the calls we get to our Support Line. For example, Professor Dominguez-Munoz, from Spain, emphasised that patients are often not assessed for pancreatic enzyme insufficiency (PEI) early enough – and some aren’t assessed at all. In his opinion, all pancreatic cancer patients will suffer from PEI and will need PERT. We have provided sessions on managing these issues – see the study day presentations for details.
We were invited to the European Pancreatic Club 47th Annual meeting to take part in the Round Table presentation – Increasing Pancreas Cancer awareness in Europe. This presentation highlighted the work of Pancreatic Cancer UK, the importance of and our commitment to research, and the impact of our Support Line service.
Read about other highlights from this conference below:
- Dr Jean-Luc Laethem from Brussels presented on FOLFIRINOX versus gemcitabine as first-line treatment options. One year survival showed 48.4% in FOLFIRINOX vs 20.6% in gemcitabine groups. However, only 26% of patients have performance status suitable for consideration of FOLFIRINOX.
- Dr Alfredo Carrato from Madrid presented the alternative opinion of abraxane as first-line treatment. In a trial of 842 patients, one year survival was 14.8% in the gem/abraxane group vs 11% in the gemcitabine group. Three year survival in the gem/abraxane group was 3%.
- Dr Carrato also discussed the PRODIGE 4 trial (comparison of FOLFIRINOX vs gemcitabine in metastatic pancreatic cancer). He highlighted the high incidence of neutropenia (45%) and diarrhoea (12.7%) in patients on FOLFIRINOX – common findings that many health professionals are aware of but find challenging to manage.
- Dr Marcus Bahra presented on cytoreductive surgery (either pancreatoduodenectomy or total pancreatectomy) with adjuvant gemcitabine, matched with a control group of palliative patients who had gemcitabine alone. This was a group of 45 patients. The overall outcome highlighted the significantly longer overall survival in those patients who underwent surgery plus chemotherapy, in comparison with the matched control group who had primarily palliative chemotherapy.
- Prof Enriquez Munoz-Dominguez presented an interesting session on the nutritional markers of pancreatic enzyme insufficiency (PEI), and their role in the diagnosis and management of pancreatic diseases. A few of the key points included:
- Be aware that coeliac disease and Crohn’s disease also cause a degree of PEI.
- Malnutrition results in decreased amino acids, fatty acids, fat soluble vitamins – and therefore increased mortality.
- Unintentional loss of weight in the 6-12 month period is the best parameter of PEI.
- Valuable lab tests to assess when considering PEI include soluble lipids (A, D, E & K), proteins (albumin is usually lower than normal), lowered Mg , low serum zinc (although zinc may be low post-operatively), and elevated Hba1c.
- Suggests that Mg is one of the best markers to use, along with plasma proteins.
Adele Hug - Macmillan Oncology Dietitian at St Luke’s Cancer Centre, Royal Surrey County Hospital, Guildford
I am part of a team of three Macmillan Oncology Dietitians that provides dietetic support for general oncology patients attending St Luke’s Cancer Centre. A large part of our caseload involves the dietetic management of inoperable pancreatic cancer patients.
Our dietetic clinics run alongside consultant and nurse led clinics, and we also review patients when they attend the day unit for chemotherapy or radiotherapy. This system prevents the need for patients to make a separate trip to the hospital just to see the dietitian, and reduces the number of DNAs, which other cancer centres often experience. As a result, we provide input to several clinics simultaneously, but it allows us to access other members of the multi-disciplinary team quickly and easily, should the need arise.
Most of our pancreatic cancer patients are having active treatment, and our primary aim is to help them to maintain or improve their nutritional status. Over 80% of our patients have lost weight prior to referral, and our first-line advice will routinely include food fortification using a ‘food first’ approach. If weight loss and poor appetite persist, we will then progress to the implementation of either homemade or prescribed oral nutritional supplements. This nutrition support advice is invariably combined with managing pancreatic enzyme insufficiency with pancreatic enzyme replacement therapy (PERT), diabetes or both, depending on the exact location of the tumour. As dietitians, we are instrumental in helping patients titrate their dose of PERT to ensure that malabsorption is well controlled.
Symptom management is crucial, and we play an important role in helping patients improve their quality of life through their cancer journey. Many patients are prescribed very intense chemotherapy regimens, which can result in numerous side effects such as nausea, vomiting, stomatitis, diarrhoea, constipation, taste changes, anorexia and fatigue. We need to distinguish between chemotherapy-related diarrhoea and/or pancreatic enzyme insufficiency, and decipher if weight loss is associated with poor oral intake, malabsorption, hyperglycaemia or cancer cachexia. In my experience, patients often suffer with a combination of these issues and our dietetic intervention reflects this.
Complications due to disease or treatment can result in patients being admitted to our oncology inpatient ward where we also provide dietetic input. Common issues include ascites requiring a drain, and gastric outflow obstruction followed by insertion of a duodenal stent. Both conditions require careful nutritional management, including changes in texture of food as patients adapt to eating with a stent in situ.
As patients near the end of life, we continue to provide dietetic input, whether they are at home or in hospital. Rather than encouraging weight stability, our focus at this time is to support patients and carers, and help them to understand that it is normal for appetite and intake to decrease during the terminal phase.
At St Luke’s Cancer Centre we try to see our pancreatic cancer patients each time they come to the centre, but due to busy clinics this isn’t always possible. We therefore aim to empower and encourage them to feel more confident to self-manage their symptoms and achieve suitable nutritional goals. All of our patients know that they have the support of a dietitian during their consultant appointments or at the end of the telephone if issues arise when they are at home.
Chris Gilbert, Pancreatic Cancer UK specialist nurse
Anecdotal evidence from our Support Line seems to suggest that some patients and their families are unaware of palliative services, or have little understanding of what this term means and how it can benefit them.
A common misconception made by patients and families about palliative care is that it is just for the last few weeks and days of life. We find that it helps to explain that palliative care is when treatment turns from curative to controlling the disease and its symptoms, and that a referral to palliative services can provide the patient and their family with a gateway into a range of services. This can help to alleviate any misunderstanding or concerns. These specialist services can also help them come to terms with their illness and prognosis.
Simple definitions of palliative care can be given, demonstrating that it:
- relieves and controls symptoms
- helps them come to terms with death as a natural process, and is life affirming
- is a complete, holistic approach, providing emotional and spiritual support, as well as dealing with physical symptoms
- helps to improve the quality of their life
- provides a support system to the patient, family and carers
- isn’t just about end of life, and can be applicable early on in the course of the illness.
It also helps to advise patients that palliative care can run alongside other therapies that are intended to prolong life and control symptoms, such as chemotherapy and radiotherapy.
When to refer to or contact palliative services can be a difficult decision to make. Positive and frequent communication with the multidisciplinary and palliative care team, and fundamentally with the patient and family, can make the process run more smoothly. Of course, it may not be appropriate for a referral to be made the day after unsuccessful surgery has taken place, but a referral prior to them being discharged home may be a useful process both for the patient and clinician.
Often, just a visit from the hospital palliative care nurse specialist whilst on the ward, or a telephone call from the community services, can be enough to let the patient know that the services are there, and what they consist of. Other individuals may require greater input if there are specific symptom control issues, counselling needs, or spiritual needs. At all times, the patients’ consent must be gained and an explanation given as to why they have been referred to palliative services.
Many patients and families still see hospice care as the last resort and hold the traditional view that it is for the last days of life. However, specialist palliative care services, such as local hospices, are able to provide authoritative knowledge and input for complex symptom control issues of pain or nausea. They can also offer respite care, access to a range of therapies and services, and are able to provide end of life care either at home or as an inpatient. Interventions may include:
- a short stay for symptom control, for example using ketamine or lignocaine infusions to control pain, drainage of ascites
- a joint home visit by an occupational therapist and physiotherapist to assess whether any equipment is required for the individual to remain at home and to improve quality of life
- attendance at a weekly skills group or day-care facility.
Some palliative services now provide a telephone line offering 24 hours 7 days a week advice and support.
Palliative services can be referred to by any healthcare professional. Any doubt or query can be answered by contacting the services you are referring to. They can also give guidance on what information to include within the referral.
Better communication can foster a better understanding of palliative services by both patients and their family. This can help to access services earlier and dispel some of those myths and misplaced conceptions.
Currently less than 1.5% of cancer research funding is directed towards pancreatic cancer. We are tackling this issue of under-funding through investment in our Research Innovation Fund. The aim of the Fund is to spur creative and cutting edge ideas and approaches in pancreatic cancer research, including those successful in other areas of cancer research that have justifiable promise for pancreatic cancer.
These applications seek to balance scientific quality and feasibility with the recognised degree of risk that truly innovative ideas carry.
The awards are intended to support pilot work that will put the researchers in a better position to apply for larger grants with us or other research funders, in order to take their work to the next stage. Funding like this, which allows a researcher to investigate a new direction for research, may make the difference in finding new pieces of the puzzle, leading to a better understanding of pancreatic cancer.
Each year we fund around £500,000 of new projects under this scheme and in the next few months we will be announcing the exciting projects that will be supported over the next year.
Who we fund
To date, we have invested almost £1m in projects under the Research Innovation Grants scheme. One of these grants was awarded in 2014 to Dr Chiara Braconi at the Institute of Cancer Research in Sutton.
Every person is different, and everyone responds differently to treatment for pancreatic cancer. Recent advances in oncology have extended the range of treatments that can be offered to patients with advanced pancreatic cancer, including combination chemotherapy regimes. However, they come with severe toxicity. Unfortunately we are lacking tools that allow us to identify which patients are going to benefit more from these treatments so that an informed decision can be made, by balancing the chance of success and the risk of side effects. Dr Braconi’s project aims to tackle this issue.
Here, Dr Braconi talks about her work:
Project title: microRNAs as biomarkers of chemotherapy sensitivity in pancreatic cancer
Lead Scientist and institution: Dr Chiara Braconi, Institute of Cancer Research, London
Start date: October 2014
This study takes the first steps to identify markers called microRNAs that have been shown to be potential predictors of sensitivity to chemotherapy. microRNAs can be found in the tissue and blood, and play a key role in controlling how cells function. My team will be using techniques to detect microRNAs in the blood of patients at different stages of pancreatic cancer, and correlate the presence of particular microRNAs with response to the combination chemotherapy treatment.
Attempts to personalise therapy for patients with pancreatic cancer have yet to be successful. But this project could in the future lead to a reproducible, non-invasive and cost-effective tool to decide the most appropriate treatment for pancreatic cancer patients. By detecting differences in microRNAs, doctors could be able to personalise treatment and choose an option that will be most effective for an individual patient, thereby preventing unwanted and sometimes severe side effects to those who are less likely to benefit.
Firstly, we prospectively collected baseline blood from pancreatic cancer patients who underwent first line chemotherapy in order to investigate the prognostic or predictive role of circulating microRNAs in these patients. One particular microRNA is recognised to be important in the pathogenesis and progression of pancreatic cancer, and preliminary evidence has shown it may predict prognosis and response to combination therapy.
In order to identify other potential candidate microRNAs that may have a role in the sensitization or resistance to chemotherapy in pancreatic cancer cells, we plan to perform in vitro studies to define the effect of microRNA modulation on drug activity.
Progress so far has been extremely encouraging in providing evidence that microRNAs could be useful predictors of chemotherapy resistance and sensitivity and deserve further global investigation.
We are aware that effective research requires a good number of clinical trials to take place, to demonstrate whether a new treatment is truly effective for patients. However, there are only a small number of clinical trials into pancreatic cancer open in the UK, and it can take a long time to recruit patients into those trials.
Not all pancreatic cancer patients will be fit enough or eligible to take part in a trial, and some patients won’t want to. However, we want to find out what can be done to make it easier for people to take part in trials if they want to. So we are keen to find out your views about how this can be achieved – by us as a charity, by hospitals, trial centres and the NHS more widely, by the pharmaceutical industry, and by the Government.
As such, we would be grateful if you would take a few minutes to complete our survey, to help us to better understand some of the issues involved. You can find the survey here.
The survey takes about 10 minutes to complete. It is completely anonymous if you wish it to be. However, if you would be prepared to talk to us in a little more detail about your views and experiences, please leave your contact details at the end of the survey.
It’s Pancreatic Cancer Awareness Month in November, and this year we are encouraging people to hold a Purple Lights for Hope event. This is our flagship awareness campaign. On 1st November, buildings and landmarks around the UK will be lighting up purple to raise awareness of pancreatic cancer in local communities.
It would be great if you could get involved – by asking your centre to light purple on this day, or holding a pancreatic cancer awareness stand during November. This will help to highlight a cancer that many people still know so very little about. Letting your media team know about any awareness event you are planning to do, and asking them to publicise it locally and through social media, can also really help to spread the message.
Or, put on your apron, grab a spoon and cook up a storm by taking part in Host for Hope. We’re asking people to organise a food-related fundraising event to help us support those affect by pancreatic cancer. Whether you are a seasoned baker or fancy trying something new, anyone can take part. We also have a range of fabulous recipes, hosting tips and advice from top celebrities to help you host your get together.