Many thanks to Charlotte Johnson, for organising the Lorna Jean Charity Ball, which took place on 29th January at the Country Park Inn, Hessle, Hull. There was a three-course meal, live band entertainment, a live auction and disco. The Ball was a great success, and raised nearly £400 for the Foundation.

There’s a great piece in the Daily Mail about NETs – you can view it at http://www.dailymail.co.uk/health/article-1221574/A-tumour-size-marble-sent-body-haywire.html

NB: The NET Patient Foundation does not suggest the chromogranin A test is appropriate for all people.
It is a test that is done when there is a strong suspicion of a carcinoid tumour, this is one type of neuroendocrine tumour. It is one of a number of tests that will be performed to investigate a carcinoid.
The NPF cannot arrange this test for you. The NPF was not party to the contents of the article before its release.

Mum died 2 weeks after the party, we joke that she is probably one of the few people to have attended their own wake! There are two Alive and Kicking pages to choose from. This one supports NET Patient Foundation, a charity raising awareness of cancers such as carcinoid. The other is UNICEF, mum’s favorite charity. Be sure to choose which you would like your support to go to! (www.justgiving.com/alivekicking2)

Upcoming event: August 2009 – London to Paris bike ride!

Jeni Stockman

Please note that there is now a link to the UKINETs website from this site. UKINETs is the United Kingdom and Ireland Neuroendocrine tumour society. UKI NETS aims to promote research, education, training and best clinical practice across a multidisciplinary area in the field of endocrine tumours. UKI NETS has amongst its members leading endocrinologists, gastroenterologists, oncologists, surgeons, radiologists, nuclear medicine physicians and pathologists to promote multidisciplinary collaborations.
Go to the links section to have a look at the bottom left hand side of the page.

The diet booklet is well on its way and we hope to have a date for release in the next two weeks.

Fancy a trip to Canada? The Canadian Neuroendocrine Tumour Society is holding their patient/doctor conference in Toronto in October. Read more>>

14th April 2008

SPECIALIST FREE UK-WIDE COUNSELLING FOR CANCER PATIENTS – AND THOSE CLOSE TO THEM
A diagnosis of cancer is a colossal hurdle which has to be faced not only by patients, but by families, friends and work colleagues alike. It is a staggering fact that one in three of us will be diagnosed with some form of cancer during our lives. Gone are the days when it was hardly mentioned, or referred to only by euphemisms, but the shock, grief and fear are just as huge; and many emotions are too painful to carry alone.

Help is at hand for anyone touched by cancer in the UK as The Cancer Counselling Trust (CCT) offers face-to-face counselling in London, and specialist telephone counselling anywhere in the country – both services are free of charge. The charity is the only organisation in the UK that offers specialist counselling not only for those with cancer, but for their families, friends or work colleagues

Further information
Information on the CCT is available at www.cancercounselling.org.uk or from them at 1 Noel Road, London N1 8HQ. Telephone: 020 7704 1137; Email: support@cctrust.org.uk

13th March 2008

ENETS Conference in Paris. The NET Patient Foundation attended along with 900 other delegates. Read more>>

26th February 2008

It is with great excitement that I announce our first patron Dr Sarah Brewer. She will be sending me a piece for the site for you all to read. You only need to ‘google’ her and you can see all the work she has done and her passion for holistic health. She will be a great asset to the charity. Watch this space or more information about her.

At the Houses of Parliament today there is a rare cancer meeting. Members of a charity we work close with, AMEND, will be attending and will let us know the outcome of the reception. It is however very encouraging that the government are beginning to think about the rarer cancers and the fact that the patients suffering from these cancers need just as much attention!

A website very worth looking at is the Rarer Cancers Forum www.rarercancers.org.uk. They have teamed together recently with Nutricia to try and look at the subject of nutrition in cancer. There is a new website and a nutritional DVD on offer – www.nutritionincancer.co.uk

The grand European Conference for NETs is being held in Paris next week. Talking with the organisers they have said that they are now full and over subscribed for the first time with over 900 delegates, so the NET world is definately growing. NPF will be there and promise to bring back a full review of the latest news and some pictures.

There have been discussions to get all the information booklets sponsored through an educational grant which is very exciting. This would mean that the charity could produce standardised information nationally. Get every one singing from the same song sheet!
We are writing 2 new booklets at present, one on nutrition and the other which is a more practical frequently asked question booklet, covering a number of topics.

28th January 2008

Holiday Inn Glasgow 20th April 2008 – Patient Support meeting. Please join us. Read more for invitation download and further information…………..

We need some more patient stories – let us put your story on the site. It really helps other patients to read about others experiences. SEND THEM IN TO catherinebouvier@btinernet.com

By the middle of February we will have a SUPPORT LINE that will not always go to answer machine. There will be a qualified health care professional answering your calls. The line will be manned from 10-2. There will be occasions when the answer machine will have to go on but we will endeavour to call you back within the next working day. We appreciate it is frustrating to talk to an answer machine!

We have now put together an advisory board including a surgeon and a pysician who are specialists in neuroendocrine tumours, and a dietician who is a senior oncology dietician with an interest in NETs. We hope that this will provide you will more reassurance that the information we are providing is correct and also if there are any queries we cannot answer, we can get quicker answers from this extended team. I am awaiting pictures and then I will announce the board on site.

Wall Planners are available for your office or even home. Email catherinebouvier@btinternet.com with your address and we will send out.

11th January 2008

A huge thank you for the generous donations sent in memory of Cathy Kalamis. We have acknowledged all those who included their address. We will endeavour to produce the newsletter that Cathy was so enthusiastic about and all the money received will help us to do that.

2- SLOWLY BUT SURELY I AM RECEIVING INFORMATION ABOUT NET CENTRES AROUND UK AND IRELAND. AS SOON AS I GET A COUPLE MORE THE LIST OF CENTRES WILL GO ON THE SITE WITH DETAILS AND CONTACT NUMBERS

4- Don’t forget the help line. If you need to chat through things or need some advice do call 0800 434 6476 or email catherinebouvier@btinternet.com

26th December 2007

It is with great sadness that we announce that Catherine Kalamis died today at around 2.00am. She was surrounded by her family.
Cathy was a truly wonderful woman with so much enthusiasm and drive. She moved the charity forward in leaps and bounds and for that she will be forever remembered. Her positive spirit and fight was outstanding and most inspirational. Our thoughts are very much with her husband Babis and her two children Nickie and George. They all gave her so much joy and encouragement and I know how proud she was of her children and their achievements.
She will be missed so much by many.

What Cancer Cannot Do

Cancer is SO limited…

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

1- Please note that you can now download the national guidelines for the treatment of NETs from this site.

2- You can now buy the Paul Hunter Tribute Concert CD for £4.99
There is a link on the left hand side of the home page.

3- The NET Patient Foundation went to the UKINETs conference which is the annual national neuroendocrine conference. We will write up the news from that very shortly.

4- There are a couple of talks from the Basingstoke support meeting – please see the link on the left hand side of the home page. This will be added to once all the talks are in.

Friday 23rd November 2007

Patient Support Group Meeting Basingstoke

We had a really successful support group meeting on the 4th November. The attendance was superb with over 100 patients and family members there. Also some pretty amazing travellers, I spoke with one couple who told me they had travelled down from the Outer Hebredes – very impressive well done.
The venue for the meeting was a little squashed due to the meeting being over subscribed but it didn’t seem to be too much of a problem.
Refreshments were terrible so we do apologise for that. Certainly not what we ordered – seemingly half a biscuit each and some tepid tea!

The talks from all speakers will be on the site within a few weeks, however the power point presentations without the text will be available by next week so do have a look.

A huge THANK YOU to all of you who donated to the meeting so generously.

A meeting is being organised at present in Glasgow and that will be in the early part of next year, and the Midlands area in the late Spring.

We will keep you posted.

September 2007

The charity is sponsoring a part time dietitian – the first for our patient group. Details of this exciting development that could have a very positive outcome for many of our patient group is now on the website. Adverts for this post are about to appear in professional journals.

We hope to hold this year’s Patient Support Group meeting later in the summer or autumn. We shall keep you posted on plans and venue – planning has been affected due to illness among the admin team.

We have some good news on the fund raising front. The Guernsey NETworkers have raised a magnificent £19,000 with the second day out on the private island of Brecqhou in the Channel Islands, courtesy of owners Sir David and Sir Frederick Barclay. Lindsey Hunter, widow of Paul Hunter, attended the event and spoke movingly about the loss of her young husband to NETs, aged just 27.

Fulford Fundraiser

The grand total of £600 has been raised in a charity snooker tournament in memory of Paul Hunter.

The event was held on Sunday October 29 at Fulford Conservative Club in Fulford Road, York and organised by bar steward Derek Reid and games organiser Brian Smith………….Read More

The Great London to Edinburgh Bike Ride

Sue Jones and her children

A team of cyclists has raised over £35,000 for the Royal Free Hospital’s Quiet Cancer Therapy Appeal on a seven-day bike ride between London and Edinburgh………….read more»

www.L2Eride.co.uk

May 2006

Listen to Paul Hunter on the Victoria Derbyshire Show on Radio 5 Live

Download Victoria Derbyshire Show

(right click on link and choose “Save Target As”)

Why we’re having a ball for charity! by Kathie Griffiths

Some of the biggest names in sport will be helping a former lifeguard raise cash for a new charity to help people suffering from a rare form of cancer.

Snooker star Paul Hunter, who is battling against the disease, will be the guest of honour at the Big Night Out organised by Cathy Douglas……..Read more

Cue ace quits to get well by Alastair Taylor

SNOOKER star Paul Hunter yesterday told how he is giving up the game for a year to focus on his cancer fight.

The three-times World Masters champion said doctors say his tumours are growing “like wildfire” after he was hit with a rare form of intestine cancer a year ago……Read more

Snooker player’s family run for cancer charity by Andrew Robinson

THE family of cancer-stricken snooker star Paul Hunter ran a half marathon to raise funds and awareness of a rare form of the disease. The player’s wife Lyndsey, her sister Leanne Morris and his cousin Tony Roberts were among several family members who ran the Leeds Half Marathon on 7th May………Read more

Family in the frame to help brave Paul – Exclusive by Geoff Fox

THE family of cancer-stricken snooker star Paul Hunter have spoken of their determination to raise funds and awareness of the rare disease after seeing him fight through the pain at the World Championships……….Read More

The total amount raised was also due to the generous donation from Paul Dillon at the Bibby Line Group in Liverpool who doubled the takings on the night.

It is thanks to people like Lynn that the Foundation is able to keep afloat. THANK YOU.

GRFomas should be suspected in patients with acromegaly that have abdominal complaints or present liver metastases.

GRFomas are frequently associated with gastrinoma and Zollinger Ellison syndrome and have been reported in the MEN I syndrome.

Thank you to Richard Burch and friends who cycled an amazing 865 miles to raise money for us and another cancer charity. In total Richard raised an amazing £2270.00

We can’t thank you enough for your efforts and a big well done.

For further information and more photos go to Richard’s website:
http://www.crazyguyonabike.com/doc/Sotonia2008

If you want to publicise your own fund raising event or meeting use this website to help boost your sponsorship and get your message out – we’d love to hear from you!

Please contact catherinebouvier@btinternet.com

The Prince’s opened their shop in aid of the NET Patient Foundation:
What a great idea. Sally Harrison asked Andy and Daph Prince to open their local shop in Cambridgeshire to fund raise for the foundation. Not only did they agree but offered to donate 10%of the days takings to us.
Also it was Sally’s 50th and she asked for donations for her birthday to send to us. Happy Birthday!

A big thank you to Sally Harrison and Andy & Daph Prince for their fundraising efforts.
It is your efforts that keep us afloat and we are so grateful.

Thursday, July 10th was a very special day. We had organised a memorial to my brother, Andrew Geach, a co-founder of the NET Patient Foundation, in the shape of a cricket match between his old club, the Vagabonds, and friends & family. The day was held at Andrew’s old prep school, Cheam in Berkshire, by kind permission of the headmaster, Mr Mark Johnson.

” After the weather we had had during the week, we were wondering what we would have to contend with on the day! However, we were greeted by sunshine and, apart from two short showers, the gods were kind to us.

” The event got underway at 11:00 and by the time everyone had arrived there were more than 100 people in attendance. The match was incredibly close and was won by the Vagabonds by only 4 runs! The trophy was presented to the captain, Stevie Hyde, by Andrew’s father, Dr Tony Geach, and was immediately put to use! The half a yard of ale was drunk with gusto by Stevie!

” We had a hog roast, provided by The Hungry Hog Company, who I would heartily recommend to anyone who is thinking of catering for an event. Mark was very professional and very unobtrusive. The meat was superb, accompanied by salads, stuffing, sauce and rolls.

” At the end of the day we held a raffle which raised £1270. Along with the sale of tickets for the day itself, we managed to raise £2650. A huge thank-you to everyone who came along and gave so much and particularly to Mr Johnson and his staff at Cheam who could not have been more amenable. I am sure that Andrew would have been thrilled by the generosity and loyalty of his friends and family. We miss him so much, but his spirit lives on and we will continue to hold events in his memory to raise money for the charity that he worked so hard to set up with Cathy Kalamis and Cathy Bouvier.”

THANK YOU SO MUCH HANNAH AND WELL DONE. £300.00 RAISED.

Hannah Nathanson is running the Rome marathon for us on the 15th March. Huge thanks and GOOD LUCK.

If you would like to sponsor her please go to her web page:
www.justgiving.com/hannahnathanson

Thanks to Roy Craft and his fundraising team for arranging this event at the local hospital in Plymouth on July 14th 2008. I believe local companies were very generous donating raffle prizes and that all that attended, over 100, had a wonderful evening.

Well done and thank you Roy.

View the pdf here>>

It is with great thanks to Lynn Jones and her organising comittee that £1500 was raised in aid of the Foundation at what looked like a great Cailidh evening.

The toal amount raised was also due to the generous donation from Paul Dillon at the Bibby Line Group in Liverpool who doubled the takings on the night.

It is thanks to people like Lynn that the Foundation is able to keep afloat. THANKYOU.

DECEMBER Diary

Josh Smith, 15 is organising a 24 hour snooker marathon at The Page Community
Association in Staple Hill Bristol on Saturday 9 December. If you are in the
area go along and support him. Josh is arranging sponsorship and hopes to organise a raffle to raise funds.

A grand total of £600 was raised at a snooker tournament held at the Fulford Conservative Club in York on 29 October – money was split between the NET Patient Foundation and Kirkwood Hospice. Over 50 prizes were also raffled. Organiser Derek Reid hopes the event will now become an annual challenge in memory of the late Paul Hunter.

15th April

Darlington Snooker Club “ An Evening with Paul Hunter and Matthew Stevens”

Thank you to everyone who attended the evening at Darlington Snooker Club. The event was a great success and raised over £600.00 for the NET Patient Foundation.

7th May – The GE Leeds Half Marathon

New mum Lindsey Hunter, the wife of snooker star and NETs patient Paul Hunter took part in the The GE Leeds Half Marathon on 7 May .

Read how she got on.

See fundraising

NET patient Andrew Geach showed his stamina – when he beat two specialist nurses at an annual five-mile fun run.

Andrew, 33, was one of a team of nine running on behalf of the NET Patient Foundation at the Knowle Fun Run in the West Midlands, that attracted almost 2,000 entrants.

The event is organised annually by the Knowle and Dorridge Lions Club

Andrew, one of the founders of the NET Patient Foundation, completed the run in 45 minutes beating both the Royal Free Hospital’s NET specialist nurses Cathy Bouvier and Philippa Davies.

He quipped after the event ‘I think they (the nurses) think there is nothing wrong with me!’

The team raised a fantastic £1,500 for the Foundation. And yes, Andrew is still standing (or was at the last count when spotted en route to Madrid for a stag weekend).

Visit the Fun Run Site

The NET Patient Foundation incorporating Living with Carcinoid Patient held a Support Group Meeting at London Zoo on 11 June

Among the speakers was Dr Martyn Caplin consultant in Gastroenterology and Hepatobiliary Medicine at the Royal Free Hospital, London but known to many as the lead physician of the hospital’s NET unit. Dr Caplin is also chairman of the UK neuroendocrine tumour committee, and scientific secretary of the European neuroendocrine tumour society.

Dr John Ramage, Consultant in Gastroenterology and Hepatology, at the North Hampshire Hospital, Basingstoke, and lead clinician for the carcinoid clinic, at Kings College Hospital, London also attended, and spoke, at the event.

Further information about this meeting can be read here Read More

17 June 2006

Passport to the Island of Brecqhou, An Exclusive Day Out – in aid of The NET Patient Foundation

Courtesy of Sir David and Sir Frederick Barclay

Residents of Guernsey in the Channel Islands were offered the chance of a life time chance to visit the secret island belonging to multi millionaire twin brothers Sir David and Sir Frederick Barclay – and raise funds for the NET Patient Foundation at the same time. The event raised £25,500

8th July – The Liddy Gwilliam Memorial Softball Tournament, Guildford

The annual event at the Guildford Rugby Club raised funds for the Royal Free’s Quiet Cancer Therapy Appeal. The event is in memory of Liddy Gwilliam nee Oldroyd a TV comedy director. Among the teams were a group of celebrities who worked with Liddy, who was particularly famous for directing every one of the award winning Drop the Dead Donkey programmes.

This charity provides wonderful information and support for patients and their families.

www.amend.org.uk

There is a direct link under the charity website section.

Nuclear Medicine imaging

Octreotide Scan showing positive markers and tumour sites

Neuroendocrine tumours have pouches on their surface which are called receptors. Certain molecules can specifically attach to (bind to) these receptors. Nuclear medicine utilises this feature of NETs by attaching a mildly active radioactive substance to a chemical that binds to the receptor. These need to be injected and imaged either that day or the next day using a special device called a gamma camera. All this occurs in the nuclear medicine department. Nuclear medicine techniques not only tell us where the tumour is but also may help us decide on the best treatment.

I-123 MIBG scan
(meta-iodobenzylguanidine)

This scan looks directly for the tumour cells, about 60% of neuroendocrine tumours have uptake of the tracer I-123 MIBG. However it is very important as uptake of the tracer means that it may be possible to use a form of MIBG for tumour treatment.
Scanning takes place the day after the injection of the I-123 MIBG. There is no special preparation, however, as the radioactive iodine (I-123) may affect the thyroid, you will be asked to take potassium iodide tablets on the day of the scan and for 2 days
afterwards. The nuclear medicine department will provide these. You may also be asked to stop certain tablets for this test. Imaging takes about 45 minutes.

In-111 Octreotide scan (Octreoscan)

This agent is made by the addition of the radioactive Indium-111 to the drug octreotide (many patients are treated with octreotide injections). In-111 octreotide is the most sensitive imaging modality for NETs which have spread. About 90% of NETs are positive for In-111 octreotide. An intravenous injection is given and then sometimes 48 hours later, but always 24 hours later, a scan picture is taken. This scan lasts about 45 minutes. There is no special preparation required for the scan. The results may help not only in determining the site of the tumour, but also the most appropriate treatment.

Tc-99m Depreotide Scan

This is like In-111 octreotide but attaches to a slightly different type of receptor. Therefore it may be possible to see tumours which were negative with In-111 octreotide imaging. No special preparation is needed; the imaging takes 30-45 minutes and is carried out 45 minutes after injection and again at 4-6 hours. However unlike I-123 MIBG and In-111 octreotide, the injection and imaging occur in one day.

Tc-99m MDP Bone Scan

This test looks at whether the tumour has affected the bones. It involves a small injection of the radiotracer and a 20-30 minute scan 2-4 hours later. You will be asked to drink plenty but can pass urine.

F-18 FDG PET (PET= Positron Emission Tomography)

FDG is radioactive glucose, which may be taken up by more active tumour cells. The preparation is basically to starve for 6 hours before injection of the F-18 FDG and for 2 hours afterwards. The imaging will take about 20 minutes and may include a CT scan as well as the PET scan a so-called CT/PET. If you are a diabetic and especially if you need insulin, it is best to tell the PET centre as soon as possible so that you can be scanned safely.

CT Scanning ( Computerised tomography)

CT scans use x-rays to generate an image of parts of the body that cannot be seen.
The scan can be used to see internal organs, bones, brain and your blood vessels.
It is the most commonly used scan for checking the status of tumour growth or stability on a regular basis.
For NET patients the CT scan is used in conjunction with a special dye that will be administered through an injection in the arm. This is often given in conjunction with an oral preparation as most patients will have one scan incorporating pictures of the chest, abdomen and pelvis. The oral contrast is the dye needed to look more clearly at the abdomen and the dye put in through the arm is needed to look at the chest and the pelvic area.

MRI (Magnetic Resonance Imaging)

Unlike the CT scan an MRI scan does not use radiation to take the pictures of your body it uses a large magnet to scan. Your doctor will choose which is the most appropriate scan for you dependent on your diagnosis and your personal details.
Which ever method of scanning is chosen for you it is normally the case that you would continue with that scan throughout your follow-up as each scan result is compared with the previous one.
Most patients for MRI require no preparation but for some types of MRI you will need to drink a liquid which contains special elements which will allow better visualisation of some organs.

Your hospital will provide individualised information sheets for these scans prior to your appointments, but if you do not receive information about the scans do not hesitate to ask.

Endoscopic Studies

You may be asked to have a endoscopy or colonoscopy as part of your investigations.
These are used in many cases to locate the site of a primary tumour or if the doctor wants to take a sample of tissue from your gut or bowel.

You may also be asked to go for an endoscopic ultrasound. This is a very sensitive method of detecting small tumours in the pancreas, stomach or duodenum.

Another investigation is an endo-anal ultrasound. This may be helpful in choosing the most appropriate treatment for patients with rectal NETs.

THIS SITE WILL BE REGULARLY UPDATED OVER THE NEXT FEW MONTHS AND FURTHER DETAILS FOR CERTAIN PROCEDURES/SCANS/TREATMENTS WILL BE AVAILABLE