Latest Updates

PAWS-GIST Clinic Newsletter - July 2016

Patients travel from all corners of the UK to attend the PAWS-GIST clinic at Addenbrookes Hospital in Cambridge.

Last month, seven new patients came to our 7th clinic following on from the six who joined us for the 6th clinic in November. These two clinics included patients from York, Maidstone, Glasgow, Newport, Cambridge, Suffolk, Leeds Stamford, Belfast, Aylesbury and Oxford.

Forty-six PAWS-GIST patients have now attended a clinic to-date.

Clinic 6 - Nov 2015

 

 

 

 

 

 

Clinic 7 - June 2016

On this occasion Dr Ramesh Bulusu, Dr Palma Dileo and Professor Eamonn Maher were joined by PAWS-GIST researcher Dr Ruth Casey. 

 

As is customary we met the evening before for our welcome meal which helps everyone to get to know one another in an informal environment. 

For most this is the very first time that they have ever met another GIST patient, let alone another PAWS-GIST patient, so it is very helpful to be able to discuss and share experiences. 

 

 

 

 

 

 

Each patient and their accompanying friends / family met with the specialists for personal consultations to discuss their individual circumstances. 

Feedback confirms that patients find it immensely helpful to ask questions of and talk to specialists who are focused specifically on PAWS-GIST cancer.

Unusually males outnumbered females 8:5 in clinics 6 & 7, although overall female patients have outnumbered males 30:16 across the seven clinics.

 

 

The body of data that is being collected for the PAWS-GIST research programme continues to grow and we are beginning to attract interest from researchers.

The next clinic will be held in November 2016.

Applications to attend should be made via the clinic website www.pawsgistclinic.org.uk which also contains a wealth of information for patients, their families and those who are keen to support this ground breaking initiative.

GastroIntestinal Stromal Tumours affect c.900 new patients in the UK each year, c.15% are estimated to be PAWS-GIST patients.

If anyone you know has been affected by GIST cancer,  please alert them to our clinic and website (www.pawsgistclinic.org.uk) and also to GIST Support UK, who are working to help patients and advance understanding of this rare disease www.gistsupportuk.com.

Our sincere thanks goes to everyone involved in the medical reviews and preparations in advance of the clinic and for the care and expertise delivered by the specialist team on the day.

Thank you also, to everyone who supports our work to improve treatment and find a cure for PAWS-GIST!

 

PAWS-GIST awarded the Liferaft Group "Global Award of Excellence"

Liferaft Group of America presented their Global award of Excellence to Jayne Bressington, Patient Director of the PAWS-GIST Initiative for her role in bringing about a model of support for younger patients with GIST in the UK.  

A brief video of the presentation can be viewed below: 

 PAWS-GIST Cancer Clinic Newsletter... Clinic 5

Since the PAWS-GIST clinics started in March 2014, to-date there have been five clinics, attended by 33 patients.                 

Last week six new PAWS-GIST patients and their families joined us at Addenbrookes Hospital in Cambridge, UK for our 5th Clinic.

It was a privelige to meet with everyone, half of whom had travelled from their homes in the West Country and were joined by others from Coventry, Blackpool & Winchester. It was very interesting to hear their individual stories and understand why they had decided to join the PAWS-GIST initiative.

On this occasion, Dr Bulusu and the specialist team were joined by Dr Robin Jones from the Royal Marsden.  Dr Jones specialises in the treatment of bone and soft tissue sarcomas as well as research involving clinical trials of novel agents and immunotherapy in sarcoma.                

We are delighted to welcome him to the team.

Professor Eamonn Maher continued his genetic diagnostic testing for inherited forms of GIST and everyone contributed to his research studies into genetic aspects of GIST.

As is customary, we gathered for an informal get together on the previous evening so that everyone could meet and get to know one another before a very busy day of appointments and consultations. 

PAWS-GIST is a coplex subject but all patients departed the clinic with a clearer understanding about theircondition and a recommended plan for their individual situation.  

Everyone is, in return, contributing to the body of data that is being collected for the PAWS-GIST research programme which seeks to improve treatment and find a cure for PAWS-GIST, working in collaboration with specialists in Europe & America.

 

The next PAWS-GIST Clinic will be held in November 2015.  

To attend please apply via the PAWS-GIST clinic website www.pawsgistclinic.org.uk which also contains a wealth of information for patients, their families and those who are keen to support this ground breaking initiative.

GastroIntestinal Stromal Tumours affect c.900 new patients in the UK each year, c.15% are estimated to be PAWS-GIST patients.

If anyone you know has been affected by GIST please alert them to our clinic and website (www.pawsgistclinic.org.uk) andalso to GIST Support UK who are working to help patients and advance understanding of this rare disease www.gistsupportuk.com.

Our sincere thanks go to all of the specialists involved in the medical reviews, the support team for all their hard work andpreparations in advance of the clinic and for the care and expertise delivered by Dr Bulusu, Dr Jones & Professor Maher on the day.

Thank you all very much for your help and dedication and to all who support us. 

 

PAWS-GIST Cancer Clinic No. 4, 17th April 2015...

Addenbrookes Hospital in Cambridge hosted the 4th Paediatric, Adolescent, Wild-type and Syndromic GIST clinic on 17th April 2015.  

This clinic welcomed five patients, x3 female and x2 males and their carers.  

We enjoyed the welcome dinner on the Thursday evening and began to learn about how each patient has been coping since their diagnosis. 

All came armed with a full medical family history and a list of questions for the PAWS-GIST specialists about their individual circumstances.

Each patients’ situation presented differing degrees of complexity to our team of experts and the recommendations made were very welcome and in some cases unexpected.      

As is standard, all PAWS-GIST clinic patients are registered on the National GIST register and are invited to consent for any GIST tissue samples that exist to be sent to/registered with the National GIST Tissue bank. They also have access to the latest forms of genetic diagnostic testing for inherited forms of GIST and the opportunity to join state-of-the-art research studies into genetic aspects of GIST. 

The next PAWS-GIST Clinic will be held on 17th July 2015.  

Applications to attend should be made via the clinic website www.pawsgistclinic.org.uk which also contains a wealth of information for patients, their families and those who are keen to support this ground breaking initiative.

GastroIntestinal Stromal Tumours affect c.900 new patients in the UK each year, c.15% are estimated to be PAWS-GIST patients. If anyone you know has been affected by GIST please alert them to our clinic and website (www.pawsgistclinic.org.uk) and also to GIST Support UK who are working to help patients and advance understanding of this rare disease www.gistsupportuk.com.

Our sincere thanks go to all of the specialists involved in the medical reviews and preparations in advance of the clinic and for the care and expertise delivered by Dr Bulusu, Professor Judson, Dr Leahy, Mr Hardwick & James Whitworth on the day. 

 

GIST Support UK's #100000voices campain hits target!

Our #100000voices campaign beat the target number yesterday and currently stands at 101,304!

We are still working to re-instate regorafenib to the CDF for GIST patients but this initial milestone has now been achieved.

 

Thank you for your support! 

 

 

 

 

 

 

Dr Ramesh Bulusu - Interview discussing Regorafenib and GIST

GIST Support UK Launches #100000voices Media Campaign to Reinstate Regorafenib to the Cancer Drugs Fund...

Please sign & share our e-petition  

We need 100,000 signatures. #100,000voices

Please take two quick minutes to add your voice to the petition and become one of the #100000voices.

SIGN HERE 

Doing so will help keep the life-saving drug Regorafenib available and ensure that those with rare cancer get a fair hearing.


http://epetitions.direct.gov.uk/petitions/73911

Dr Ramesh Bulusu - Discusses why GIST patients need regorafenib...

 

In the News....

The Mail on Sunday - Health correspondent Stephen Adams' report about Regorafenib...

 Vicky Rocckigham and Richard Bassett (above) were interviewed by the daily Mail and their story reported on Sunday 1st March.

Read the full story here

 

 Picture Courtesy of Mail on Sunday and Matthew Pover

 

 

 

 

 

 

 

In the News...

Jemma Mitchell featured in a BBS South News report about regorafenib being cut from the CDF for GIST patients...

Many thanks to Jemma Mitchell for bravely sharing her feelings about what having regorafenib cut from the cancer drugs fund means to her and other GIST patients, during an interview with BBC South.

 
 
‘Pictures courtesy of BBC South Today’ 

National UK GIST Tumour Bank

As part of the effort to create our PAWS-GIST clinic in the UK it was concluded that a National GIST tumour bank would be needed so that any research team considering work on GIST can have a central place to apply for this rare material.

Professor Andrew Hall, Director of the Northern Institute for Cancer Research, prepared and submitted a proposal to the ethics committee to set up a National GIST tumour bank and was given approval.

In future these rare samples (fresh, frozen and in paraffin blocks in addition to other relevant materials can be stored for use in research programmes.

Access to primary clinical samples (tumour and matched normal blood) is vital to progress our understanding of rare tumours such as GIST. With your help we can set up a national collection of samples available to anyone with a good quality research proposal.

This bank is a valuable resource that will support GIST cancer research locally, nationally and internationally. It will provide researchers with a diverse selection of high quality GIST tumour specimens and clinical data obtained by dedicated tumour bank staff who follow strict procedures and ethical guidelines.

Research will progress faster if there is a good supply of GIST tissue upon which to test potential treatments and develop new diagnostic tests.

Operating within the NICR in Newcastle, the GIST Tumour Bank will coordinate the collection, storage and distribution of a variety of paediatric and adult biospecimens including fresh, frozen and paraffin blocks in addition to blood samples and clinical data.

Working in collaboration with pathologists, medical oncologists, surgeons and other hospital personnel, specially trained staff will obtain patient consent, collect samples and assemble clinical information about each donor and their corresponding specimens.

Please try to assist in this research by sending samples to the National GIST biobank.

If you have samples to donate please contact:

Professor Andy Hall andy.hall@ncl.ac.uk for details of the consent and donation process.

National GIST Tumour Bank Flyer

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Third PAWS-GIST Cancer Clinic held in UK – 21st November 2014...

The third Paediatric, Adolescent, Wild-type and Syndromic GIST clinic was held at Addenbrookes Hospital, Cambridge on Friday (21st November 2014).  

This clinic involved six patients, x4 female and x2 males from locations across the UK. 

GIST Support UK hosted an informal welcome meal on the evening before the clinic so that we could all get to know one another. Some of our patients have been struggling with this disease for several years while others had only recently been diagnosed.

The clinic day consisted of consultations with the specialist team lasting a minimum of one hour per patient. This opportunity to discuss individual cases, ask questions and receive personalised treatment path recommendations was for most a welcome relief providing options and advice that had not previously been considered.

All clinic participants are registered on the National GIST register and are invited to consent for any GIST tissue samples that exists to be sent to/registered with the National GIST Tissue bank. They also have access to the latest forms of genetic diagnostic testing for inherited forms of GIST and the opportunity to join state-of-the-art research studies into genetic aspects of GIST.  

This third clinic brings our patient numbers up to twenty-four this year and continues the development of the PAWS-GIST patient dataset in the UK.

We are planning to hold the next PAWS-GIST Clinic in April 2015 and are continuing our quest to understand the causes and mechanisms of Gastrointestinal Stromal Tumour in children, young people and all with wild-type GIST.

Applications to attend the next PAWS-GIST clinic should be made via the clinic website www.pawsgistclinic.org.uk which also contains a wealth of information for patients, their families and those who are keen to support this ground breaking initiative.

GastroIntestinal Stromal Tumours affect 600-900 new patients in the UK each year c15% are estimated to be PAWS-GIST patients.

If anyone you know has been affected by GIST please alert them to our clinic and website (www.pawsgistclinic.org.uk) and also to GIST Support UK who are working to help patients and advance understanding of this rare disease

www.gistsupportuk.com  

2015 Calendar in aid of PAWS-GIST available now...

Wild-life Photographer Charlie Hamilton-James & Businessman James Crawford have produced a charity calendar in aid of PAWS-GIST. (Paediatric, Adolescent, Wild-type & Syndromic-GIST cancer).

PAWS-GIST patron “Charlie”, photojournalist and presenter has donated 12 of his fabulous wild-life photos.

James & Touchpoint Change Consultants who are PAWS-GIST supporters, have funded 500 copies of the PAWS-GIST Calendar for 2015 and are selling them for £8.50 each (plus postage).

The calendars feature 12 stunning photographs of wildlife from around the globe including Lions, Leopard, Orang-utan, Otters and Kingfishers.  

All funds raised from the sale of this calendar are being donated to PAWS-GIST who aim to improve treatment, be a catalyst for research and find a cure for children, adolescents and younger adults diagnosed with GIST cancer and all patients diagnosed with wild-type GIST cancer.

TO ORDER YOUR COPY & SUPPORT THIS GROUND-BREAKING INITIATIVE PLEASE EMAIL:

fundraising@pawsgistclinic.org.uk  

“THANK YOU FOR YOUR SUPPORT” 

 

 

Second PAWS-GIST cancer clinic in the UK...

Further to the launch of the Paediatric, Adolescent, Wild-type and Syndromic GIST clinic at Addenbrookes Hospital Cambridge UK, earlier this year we are pleased to report that the second clinic happened earlier this month (August 2014). 

The second clinic involved seven female patients, x5 in the range 16 -25 and x2 aged 25 plus, from a variety of UK locations.

For many, this was the first time they had met another person diagnosed with PAWS-GIST cancer.

Valuable conversations and connections were made at the welcome meal hosted by GIST Support UK on the evening before and during the clinic.

Having broken the ice and shared experiences, our patients met with the team of PAWS-GIST specialists for their individual consultations. 

 

During this time they:

- discussed their individual case history

- asked any questions

- engaged with the specialist geneticist

- received recommendations designed to optimise management of their treatment and make life as normal as possible.

Patients attending the clinic are registered on the "National GIST Register" and where tissue samples exist are invited to consent for their samples to be sent to/registered with the "National GIST Tissue Bank" (see below) . They also have access to the latest forms of genetic diagnostic testing for inherited forms of GIST and the opportunity to join state-of-the-art research studies into genetic aspects of GIST.

To-date, eighteen PAWS-GIST patients have now attended a clinic and are part of the initiative to build a PAWS-GIST patient dataset in the UK. This will be used to build expertise and understanding of the causes and mechanisms of Gastrointestinal Stromal Tumour in children, young people and all with wild-type GIST and identify specific and effective treatments. 

Applications to attend the next PAWS-GIST clinic should be made via this web site www.pawsgistclinic.org.uk which also contains a wealth of information for patients, their families and those who are keen to support this ground-breaking initiative.

If anyone you know has been affected by GIST please alert them to our clinic and website www.pawsgistclinic.org.uk and also to GIST Support UK who work to help/support GIST cancer patients and advance understanding of this rare disease www.gistsupportuk.com 

Best wishes

Ramesh Bulusu                                          &              Jayne Bressington

Dr V Ramesh Bulusu                                                                            Trustee GIST Support UK

Clinical Lead, PAWS-GIST Clinic                                                        Patient Director of the PAWS-GIST Initiative

Consultant Oncologist MD, MRCP, Msc, FRCR (Oncology)                                                   

                                                                  ---------------------- ENDS ------------------------

National UK GIST Tumour Bank

As part of the effort to create our PAWS-GIST clinic in the UK it was concluded that a National GIST tumour bank would be needed so that any research team considering work on GIST can have a central place to apply for this rare raw material.

Professor Andrew Hall, Director of the Northern Institute for Cancer Research, prepared and submitted a proposal to the ethics committee to set up a National GIST tumour bank and was given approval. In future these rare samples (fresh, frozen and in paraffin blocks in addition to other relevant materials can be stored for use in research programmes.

Access to primary clinical samples (tumour and matched normal blood) is vital to progress our understanding of rare tumours such as GIST. With your help we can set up a national collection of samples available to anyone with a good quality research proposal.

  • This bank is a valuable resource that will support GIST cancer research locally, nationally and internationally.
  • It will provide researchers with a diverse selection of high quality GIST tumour specimens and clinical data obtained by dedicated tumour bank staff who follow strict procedures and ethical guidelines.
  • Research will progress faster if there is a good supply of GIST tissue upon which to test potential treatments and develop new diagnostic tests.

Operating within the NICR in Newcastle, the GIST Tumour Bank will coordinate the collection, storage and distribution of a variety of paediatric and adult biospecimens including fresh, frozen and paraffin blocks in addition to blood samples and clinical data.

Working in collaboration with pathologists, medical oncologists, surgeons and other hospital personnel, specially trained staff will obtain patient consent, collect samples and assemble clinical information about each donor and their corresponding specimens.

Please try to assist in this research by sending samples to the National GIST biobank

If you have samples to donate please contact:

Professor Andy Hall for details of the consent and donation process.

Further: National GIST Tumour Bank Flyer (Pdf, 345K)

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In The News

Cambridge Hospital Hosts Clinic for Rare Cancers:

Addenbrooke’s Hospital in Cambridge will host the first ever national clinic set up to investigate rare cancers of the digestive system. A specialist team of UK experts will meet at the Cambridge hospital four times a year from early 2014, running a clinic to review the health of PAWS-GIST patients.

Full Article: First ever national clinic set up to investigate rare cancers of the digestive system (Pdf, 422K)

Cambridge Hospital Hosts Clinic for Rare Cancers Flyer

 

Bath University support PAWS-GIST and GIST Support UK

A very special team of postgraduate students at Bath University selected PAWS-GIST and GIST Support UK as their charity for the Zurich Insurance Charity Challenge. They have developed wonderful awareness posters and brilliant flatpack collection boxes that our supporters can use to raise funds.

Winning Team Zurich Challenge - Bath University Postgraduates

Many congratulations "Team PAWS-GIST" on winning the competition against stiff competition and sincere thanks for all of the hard work and creativity that you have invested on our behalf.

Please see their winning video below:

 

Collection boxes and posters will be available soon...

 Press Release 20th March 2014

"Europe’s first clinic for rare cancers to be held at CUH Addenbrooke’s"

  

 

 

 

 

 

 

 

9th April 2014

A new PAWS-GIST Patron!

 

 

 

 

 

'BBC/walltowall'

'Christina Marie finalist form the Voice 2014 agrees to be a PAWS-GIST patron - thanks for your support Christina Marie - you're a winner as far as we are concerned!'

 

 

 

paws-gist2-press-release-1.pdf 

We are on the TV!

BBC News Reports can be viewed by clicking the links below

First PAWS-GIST Clinic reported on BBC News and Radio 2 news flash...

Click the link below to view the interview....

www.bbc.co.uk/news/uk-england-cambridgeshire-26791535

The clinic was featured on BBC News yesterday. The full news report can be seen here on the BBC IPlayer. Its just 2 minutes long and kicks in at 8mins 18 seconds.

www.bbc.co.uk/iplayer/episode/b03yvt86/Look_East_West_28_03_2014/

 

 

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