Patient Support Meeting Basingstoke 2007
Peter Gwilliams Document – powerpoint.
SUPPORT GROUP MEETING 4TH NOVEMBER 2007 BASINGSTOKE
Question & Answer Session
Q. NET01 Study is a combination chemotherapy study that has just been set up – where is set up?
A. This is a randomised phase11 study that is multi centred. They are looking for 84 patients in total. The 2 arms are either the patient has capecitabine and streptozocin or the patients have capecitabine, streptozocin and cisplatin. The patient group will be unresectable or metastatic neuroendocrine tumours.
As with all clinical studies there are strict inclusion and exclusion guidelines and this will be discussed in full with you.
Q. How common is insulin imbalance/diabetes as a side effect of either treatments or cancer elsewhere and what are the implications
A. Medications such as Somatostatins inhibit peptides and hormones. There can be an imbalance in blood sugar levels in diabetics. This should be monitored carefully
The type of tumour such as insulinomas increase insulin production and
Gluconomas increase blood sugar. This is caused by the tumour.
Q. I have had 5 hepatic embolisation procedures so far. Is there any reason why I could not continue? If not what is the alternative
A. Transient results
This procedure can be repeated several times if the response is promising/successful both clinically and in terms of the patients quality of life improving. There are alternatives in some hospitals – if not available in your hospital you can request to go somewhere else.
Q. Can we have a political lobby to get standardised funding at PCTs?
A. This is something that the Foundation is keen to advance. Comments from the floor included:
Try to by-pass the GP – if the GP is not allowed to write the prescription confirm with the PCT that they will pay and obtain the prescription from the consultant.
After 4 appeals to the PCT patient went to the media – ITN and got funding immediately!
PCT’s are worried about opening a ‘floodgate’ however monthly LAR/ Lanreotide is fully licensed for use in neuroendocrine tumours.
Other alternatives are available if the GP will prescribe but not give and that is in the form of health care at home. Ask your nurse for information if relevant to you.
Q. Are there contra-indications with regard to full body massage?
I have read that there may be problems involving the lymph system.
A. There should be no major complications. The Royal Free Hospital complimentary team have specially trained masseurs for oncology patients. It is very important to go to a specialist centre.
Q. Any indications that acupuncture can be beneficial (or otherwise)?
A. Acupuncture can help pain and stress in some relaxation. There is anecdotal evidence of good positive results. Again, always go to recognised acupuncture and reflexology specialists. Check for registered practitioners.
Association of Reflexologists
5 Fore Street,
Taunton
Somerset
England
TA1 1HX
Tel: 0870 5673320 (Overseas: 01823 351010)
Fax: 01823 336646
Email: info@aor.org.uk
http://www.aor.org.uk/
or
The British Acupuncture Council (BAcC)
63 Jeddo Road, London, W12 9HQ, UK
Tel: +44 (0) 20 8735 0400 Fax: +44 (0) 20 8735 0404 http://www.acupuncture.org.uk/
Q. Holiday insurance is there any companies that will cover me?
A. Cancer Bacup 0808 800 1234 produce annual list –
http://www.cancerbackup.org.uk/Resourcessupport
/Practicalissues/Travel/Travelinsurance .
MacMillan Cancer Support – 0808 808 2020 http://www.macmillan.org.uk/Get_Support/Find_information
/Getting_travel_insurance/Travel_insurance_companies.aspx
http://letsbeatcancer.co.uk/travelinsurance.aspx
Nat West Gold Card offers insurance if you can say ‘No’ to 5 questions. It is possible to come off prescription drugs such as Imodium and buy over the counter thereby being able to confirm that you are not taking prescription medication.
Q. Can chemo-embolisation cause pancreatitis?
A. Chemo-embolisation rarely causes pancreatitis. It can rupture the gall bladder and cause damage to the small bowel, but this is very rare.
Q. What is involved in MEN1 testing? Is it possible that this may have been done without our knowledge?
A. Genetic testing is always carried out with patient’s knowledge – it is totally y wrong to screen patients without full consent.
www.amend.org.uk has a great website and all the information needed for MEN conditions.
Q. How high is the risk to my children inheriting the disease if any?
Q. Can this condition be passed down through the genes to my children?
A. Only 10% pancreatic NETS are shown to also have MEN1. Suspicions arise from thorough family history and initial NET screening blood tests.
For the majority of patients there is no indication for genetic testing.
Q. Much has been said about a ‘multi disciplinary’ approach – who takes the lead?
A. In most hospitals there will be a lead consultant in the speciality, however it is very much TEAM work where everyone voices their opinion at regular meetings. There are many dimensions to the care of a NET patient, and if a multidisciplinary team was not up and running it would mean that the patients would have to be sent to many different specialities which would be very time consuming and distressing for the patient. With an MDT all theses specialties meet and discuss the patient at the same time.
Q. Can Carcinoid be diagnosed just on the liver ultrasound?
Does it have a characteristic pattern?
A. An ultrasound is a cheap and easy examination where the diagnosis of
carcinoid can be incidentally diagnosed. An ultrasound cannot tell whether it is a carcinoid or other tumour.
Ultrasound not specific for NETS.
There are specific scanning techniques for NETs e.g. the octreotide scan.
Q. What is Carciniod Crisis?
A. This is a life threatening condition where the tumours rapidly release hormones.
It is most likely to occur in patients with a small bowel primary during interventional (e.g. surgery) procedures.
There are ways of preventing this – prophylactic infusion of Octreotide 12-24 hours pre and post procedure. The anaesthetist increases IV treatment during surgery – each time own risk.
