Minutes of FROG meeting

6th February 2012

 

1. Introductions

 

There were no new members present but 13 people and David Cranston attended to contribute to a positive meeting on a cold and foggy night. Clive Stone chaired the meeting.

 

2. Appointment of Minute Recorder

 

John volunteered to do this.

 

3. Matters arising from the Minutes of the last meeting

 

Befriending courses - A reminder that Macmillan cancer support are looking for volunteers to help someone who is living with cancer. They are offering a free two day workshop that will provide an overview of what’s involved in buddying and befriending so that you are able to understand the role of a buddy/befriender, establish best standards of practice and be able to manage the emotional demands of the role. If anyone is interested then please contact learning@macmillan.org.uk

 

Core purpose of FROG - We reaffirmed the statement agreed at the previous meeting and added some further text so it now reads as ‘We all want to live as well as we can for as long as we can and FROG provides a welcoming and inclusive environment to help achieve that aim’.

 

Members personal experiences - Jim Gale has kindly shared his thoughts and experiences by contributing to the “In our own words” section of the FROG website. Other members are encouraged to provide further stories to help bond our group and to offer support to others in similar circumstances.

 

SRS Campaign - Nothing to report this month.

 

James Whale Fund – details of the slides and presentations used at the excellent Kidney Cancer Patient Day that many FROGs recently attended are now available to view online here.

 

The Health and Social Care Bill 2011 – Some members have concerns over the legislation but no consensus was reached at the meeting regarding whether FROG should take a combined view or voice an opinion on the Act at this point.

 

4. Open Forum

 

Another new kidney cancer drug – John informed the group that on Jan 27th it was announced that the Food and Drug Administration in the United States had approved INLYTA (axitinib) for the treatment of patients with advanced renal cancer after failure of one prior systemic therapy. The approval is based on data from a Phase 3 trial, which demonstrated that INLYTA statistically significantly extended progression free survival from 4.7 months to 6.7 months compared to those treated with sorafenib, a current standard of care for this patient population. Meanwhile we await developments regarding the availability of this new drug in the UK.

 

Future Speakers – Steve has arranged for Dr Geoff Higgins to address us at our meeting on June 11th. Dr Higgins is a CRUK Clinical Scientist in the department of Oncology at Oxford University and he will be informing us about how radiotherapy is used in renal cancer, recent advances in stereotactic radiotherapy (i.e. ‘Gamma Knife’) and potential drugs that may be used in clinical trials in future alongside radiotherapy. He will also give a summary of his work aimed at making cancer cells more sensitive to radiotherapy.

 

Claire has arranged for Nicola Stoner, Lead Cancer Pharmacist to attend our March meeting.

 

UCARE – FROGs were reminded that the ‘Out of the Blue’ UCARE concert on the 3rd of March still has tickets available. More details and how to purchase tickets are available through this link.

 

There is also a UCARE collection at Sainsbury’s, Heyford Hill on Saturday 10th March from 10 a.m. till 4 p.m. so if you can spare an hour or so to help with the collection please call 01865 767777 or email ucare@ucare-oxford.org.uk.

 

Jean asked that FROGs read and think about the latest UCARE newsletter which addresses the problems of raising funds in a challenging economic climate. Focus is on the importance of what might appear to be small efforts and trying to show that all efforts are valuable. Like all charities they are suffering in the current economic climate and big donors are understandably cautious. For example, a donation of £1000 may be lost, but if 100 people on the database each raise £10 nothing has been lost. UCARE continues to work towards the goals of funding research and raising awareness. It was mentioned that just one of the projects that UCARE supports is High Intensity Focused Ultrasound (HIFU) which moved the meeting seamlessly onto our next part, that of this month’s guest speaker...

 

5. Guest Speaker

 

David Cranston gave an excellent presentation on the work currently being done in the area of High Intensity Focused Ultrasound (HIFU). FROGs may have recently seen his work featured on the BBC news. We hope to be able to provide the slides used in his presentation on the links section of the FROG website very soon. Please do check at a later date as they are well worth viewing.

 

6. Date of Next Meeting

 

This will take place on Monday 5th of March at Maggie’s Centre, Churchill Hospital, Oxford. It starts at 6:30 p.m. and there is free tea and coffee available before and after the meeting.

 

 

 

 

 

Minutes of FROG meeting

9th January 2012

 

1. Introductions

 

    • There were no new members.

    • There were 15 attendees plus Andy Protheroe and Gemma Crane.

 

2. Appointment of Minute Recorder

 

    • Steve volunteered to do this.

 

3. Matters arising from Minutes of last meeting

 

    • Clive started the meeting referring to the last session stating that he is eager for more participation by    group members and that his position as Chair should not stop others contributing. It was agreed that everyone values Clive's chairmanship, and that it is often a thankless task, and that the burden of filling an agenda should not be too much of a concern. A looser, less formal approach works well too.

    • A long discussion took place where the group considered the core purpose of FROG and it was agreed that a form of words describing this should be pulled together that will help guide future sessions and help us all to encourage more people affected by Kidney Cancer to attend. Please find a suggestion for this below. Feedback is welcome. "FROG (Friends of Renal Oncology Group) aims to provide an inclusive environment for patients, family and friends to get practical support and access to experts who will help guide and educate those affected by Kidney Cancer. We also take time to chat over a cuppa, forging friendships, creating a solid network who are on hand to help whenever called upon - We want to live as well as we can for as long as we can”.

    • On the subject of support, reference was made to seminars conducted by Macmillan Cancer, that provide guidance to those supporting people affected by cancer. Gemma will find out more and share with the group.

    • It was suggested that people consider composing their own personal experiences for inclusion on the FROG website. Not only will this provide readers with a different view of others experiences, but it can often be a cathartic experience itself. Please send any content (N.B. it can be very brief if preferred) to Alan Mynall.

 

4. Open Forum

 

    • Campaigning - It was agreed that it would be more appropriate for campaigning issues to be dealt with outside of the hospital grounds and with the focus of a dedicated sub group. Clive is keen to exploit the already effective “Justice for Kidney Cancer Patients” approach. Volunteers are invited to contact Clive who will coordinate sub meetings. Clive spoke about his latest work, which focuses on inconsistencies of approach to SRS treatment by different PCTs with decisions based on cost. Updates on campaign activity will be provided at FROG meetings.

    • Reference was made to the Health and Social Care Bill and everyone was encouraged to monitor news on its progress.

    • Speakers - David Cranston will attend the next meeting in February to talk about High Intensity Ultrasound (HIFU). Nicola Stoner, Lead Cancer Pharmacist will attend in March providing information about her role. Dr Protheroe will talk about clinical trials at a future meeting. Steve Easton will contact Geoff Higgins, Radiotherapist to invite him along at a suitable time.

 

Next meeting

 

The next FROG meeting will take place on February 6th

at 6.30 at the Maggies Centre, Churchill Hospital, Oxford.

 

 

 

 

Minutes of FROG meeting

5th December 2011

1. Introductions

 

    • There were no new members.

    • Only 12 members present as some suffering from seasonal colds. Many thanks to Gemma for very kindly supplying mince pies and chocolate goodies.

 

2. Appointment of Minute Recorder

 

    • Clive volunteered to do this on this occasion.

 

3. Matters arising from Minutes of last meeting

 

    • Next campaign will be focussed on access to Stereotactic Radio Surgery (SRS) http://www.gammaknife.org.uk/

    • Clive has yet to assimilate the information from The Lancet article.

    • It was decided not to invite Karol Sikora to address us.

 

4. Open Forum

 

    • Making time for all - Clive had received an email from Gemma regarding our last meeting where it appears that someone had mentioned that FROG has lost the support group aspect re the information, educational, and experience sharing. We were reminded “the group also needs to be inclusive and we need to respect each other's opinions and give everyone the chance to speak and give their views.”

Naturally I have taken this on board in a positive way and apologise if I have fallen short. I will ensure that I will give everyone the chance to speak in future. It’s a shame that this was not discussed with me at the time, so that any concerns could have been addressed immediately to provide reassurance. I would rather we debate things in an open and free manner, as I like to think we are just one big family.

I would remind members that we recently arranged a free trip to the James Whale Patient Day in Reading, with transport provided, which was an interesting day crammed with valuable information providing just such an opportunity but alas this was poorly supported despite being well promoted at our meeting

    • Ideas for Speakers – a) It was suggested that Clive ask David Cranston to see if he will talk to us about High Intensity Focused Ultrasound (HIFU), as recently featured on BBC TV. b) Clive will ask Andy P to update us about any clinical trials in progress for renal cancer. c) Clare kindly agreed to approach a friend of hers, who is a professor in Pharmacology, to come and talk to us.

    • Health and Social Care Bill – not discussed

    • Do we want January meeting? It was decided that we should have a meeting in January.

 

5. AOB

    None.

 

Next meeting: will be on the SECOND Monday in January due to the bank holiday - so

Monday 9th January at 6.30 at Maggie’s Centre.

 

 

 

 

 

FROG Meeting - 7th November 2011

 

Minutes

 

 

1. There were 19 attendees at tonight’s meeting. A good turn out!

Clive Stone presiding again.

 

2. Maggie’s Questionnaire / Donation

 

Jean asked those attending to complete the annual Maggie’s questionnaire.

 

Later on in the meeting it was agreed that we might wish to contribute £5 to Maggie’s in January by way of a thank you for use of their facilities.

 

3. Campaign

 

Clive explained that he is keen to use some of the group’s energies to embark on a new campaign and that it is his ambition to consolidate the strength of other cancer groups and arrange a rally in London (Hyde Park?). There was broad agreement from the group to support such a campaign but that it is important to ensure there is a focussed objective.

 

Some ideas that were discussed included;

 

   A) A demand for an extension to the 3 year cancer drugs fund commitment

 

   B) Raise the awareness of the value of treatment and investment for cancer sufferers and to challenge the perception that treatments only prolong life for around 3 months. The FROG group has plenty of real examples where treatment has not only extended life but has also allowed people to lead virtually normal lives.

 

   Next steps;

 

     • Anyone with other ideas should send these directly to Clive for consideration.

     • Dr Protheroe will provide a copy of the article in the Lancet for the group to review and act on if      appropriate.

     • Clive will work up this acorn of an idea for discussion and agreement at future meetings. Clive suggested that any campaign should come under the auspices of the Justice for Kidney Cancer Patients group.

     • Dr Protheroe suggested that a message might be well communicated by organising a ‘patient day’ where Clive carried out a presentation, inviting along Rose Woodward and representatives from other groups.

     • It was suggested that Karol Sikora be invited to a FROG meeting

 

 

4. James Whale Fund Patient Day

 

The next Patient Day is due to take place on 30 November at the Blue Mountain Conference Centre, Binfield, Nr Bracknell, Berkshire, RG42 4EX.

A very special occasion as our own Gemma Crane will be one of the speakers on the day.

 

A FROG delegation will be attending. Alan will be the designated driver. He will contact those people below regarding pick up venues and timings.

Sandy & Mike, Claire & Alan, Clive, Wendy.

 

Please contact Alan directly as soon as possible if you’d like to go along too. Depending on the vehicle and space available, Alan will invite attendees from the High Wycombe FROG Group.

 

STOP PRESS  -   The minibus is booked and is a seventeen-seater, so there are currently nine seats up for grabs, on a first come first served basis. contact Alan soonest if you're interested alan@mynall.co.uk

 

NB – Registration for this event is required on-line in advance.

http://www.etickets.to/buy/?e=7339

The event is free for patients and carers.

Please ensure you register beforehand if you intend to come along. It is an easy process on line.

 

Encouraging FROG Groups elsewhere

 

It was agreed that those attending the patient day should use all of the resources available to us, badges (Clive will ask Val Berry if she can help us source some), flyers, bookmarks etc to promote the FROG Group and the benefits of setting one up.

It was also agreed that we should offer to make available a representative from our group to attend any inaugural sessions to help get new groups off the ground.

 

5. The FROG Welcome Flyer

 

It was agreed that the flyer pulled together by John providing details for any prospective or indeed new members is excellent and that we should make it available as widely as possible.

 

• Alan will include this on the FROG website

• Gemma will make it available in the outpatients section

• Gemma will also hand them out to relevant patients

• We will ask Maggie’s if they would be prepared to display copies too.

 

6. Minutes

 

John raised the importance of reviewing previous minutes at each meeting so that all items can be followed up, and we won't have to keep reinventing the wheel.

 

7. Next meeting

 

The next meeting will take place on 5 December 2011 at 6.30pm.

 

This will be a Christmas special – Gemma will bring some Mince Pies and wine.

 

Steve Easton

 

 

 

FROG Meeting - 3rd October 2011

 

Minutes 

 

Alan Mynall sat in for Clive Stone again, as Clive was with his wife Jan in the hospice.

 

1. There were only eight members present, but we welcomed four new members: Jill and Ken (apologies for not knowing their surname) and Sandra and Phillip Busby.

 

2 .Current Frogs welcomed new Frogs. Each of us briefly outlined what had brought us to the group, adding in some cases what treatment we had had or were undergoing, which provoked discussion and a useful Q &A session. This welcome and subsequent discussion took up most of the meeting and was both cordial and informative.

 

3. John Evans has written a welcoming note “Welcome to the Oxford Branch of FROG!” which might be given to all newly diagnosed or treated kidney patients. It was circulated and discussed, leading to agreement that it would be a very useful addition to the bookmark which is currently given out.

 

4. For the benefit of new Frogs, suggestions were made on sources of information they might usefully tap into.

 

5. A brief mention was made of the pending collection of questions by the PCT subgroup, but it was agreed that with such a small number attending no useful headway could be made.

 

6. At an earlier meeting, the suggestion was made that Andy Protheroe might talk about the role of immunotherapy in the treatment of kidney cancer. It was agreed that this idea should be pursued.

 

7. We considered what our next social function might be, and this led to the generally accepted conclusion that a pre-Christmas dinner might be the easiest event to organise. No decision was made on where or when but the venue would probably be in South Oxfordshire or Central Oxford. This would need to be booked sooner than later, but no one was willing or able to take on the job of organising it.

If any other member feels they may be able to do this, please go ahead.

It was noted that the Buckingham FROGs have expressed a willingness to join us again for our next social event.

 

8. Rather than appointing someone to take minutes for future meetings, it was generally agreed that we would rotate this task on an ad hoc basis.

 

Valerie left the meeting early to go and visit Puck in the hospital. She returned later to give us the good news that Puck will be going home next week.

 

 next meeting

Monday 7th November

same place same time

 

from notes taken by Jean Simmons

 

On returning from the meeting, we have found the sad news of Jan's passing.

Coming so soon after the loss of Angela, the impact is great.

We have thought about both of them, their friendship and their contributions to Frog and to the lives of other members of the group.

Our thoughts are with Clive and Roger and their respective families at this difficult time.

 

 

 

 

FROG meeting - 5th September 2011

 

Minutes

 

1. Introductions

 

       Alan Mynall chaired the meeting, as Clive was indisposed.

          Only seven members present this time, plus Val Berry, Dr Prothero, and Gemma.

 

2. Open Forum

 

       Suggested questions for the group for those meeting the PCT.

          The work of the sub-group was read out for the consideration of the group.

          Andy Prothero thought it was good to act as part of our group to put forward our feelings.

          It was thought the history of FROG might help the cause.

          It was decided that the group was the most important thing, and that any lobbying

              should be done by a sub-group, so not breaking up the supportive function of

              FROG.

          It was felt very important that people be made to feel welcome, making sure there is

              enough time in meetings to exchange views and chat amongst themselves.

          The sub-group agreed to meet again to consider how we proceed, and that, if we do

             arrange to meet Ljuba of the PCT, it would not be at a regular FROG meeting, but at

             a separate meeitng to be arranged. Any other members would be welcome to join in

             the process.

 

       We discussed briefly the idea of setting up other FROG groups nationwide.

             The James Whale Fund might be a practical forum for trying to spread the word

                about FROG.

 

       The group considered the possibility of lobbying the drugs manufacturers to see if

                anything could be done to reduce the price of cancer drugs in the UK.

             It was thought this could only be done as a side issue, and not a core issue for FROG.

             There was a suggestion that the group could write letters to the Times, airing our

                views and concerns.

 

       Ideas for social events

             Future social events were considered, including Dog Races, Banger Races, Ceilidh,

                Quiz Night, Skittles, Meal.

             We thought a decision should be made at a larger meeting, to include more people.

 

3. AOB

 

       There was no other business, though it was generally agreed that having time to chat and

          socialise was important for meetings, and that we may not have sopeakers as frequently

          as we have done.

 

4. Time for catching up over a cuppa.

 

 

Next Meeting

Monday 3rd October

same place, same time.

 

from notes taken by Sue Mynall

 

 

The Boat Trip 2011

 

departed Folly Bridge, Oxford,

2.30pm Wedenesday 17th August 2011

and a good time was had by all.

 

Here's a few photos . . .

 

 

 

 

two FROGs arriving

 

 

settling down for the trip

 

 

this was a scheduled sailing, so we shared the boat

with other mortals

 

 

 

 

 

 

 

some were better prepared for the inevitable rain

most of us had believed the forecast and left our brollies behind

 

 

Sandford Lock, where we disembarked and resorted

to the King's Arms for refreshment

 

 

there were thirteen of us at table

not quite like the last supper

 

 

on the return journey we all got under the awning

to stay dry

 

 

 

 

FROG meeting - August 1st 2011

 

Minutes

 

 

Introduction: Clive welcomed a good crowd of 24, plus Dr. Protheroe.

 

Open Forum: there was no formal business today as our main purpose was to celebrate Puck’s 80th birthday.  Val had kindly brought drinks and a lovely cake and we were all delighted to share this occasion with Puck, who has been such a stalwart member of FROGs.  To add to the party atmosphere, it was also Steve’s birthday and he had provided even more delicious calories to be consumed.

 

Next social event:  The cost of chartering a boat on the river is £650.00 for up to 30 people, plus £9.00 plus VAT per head for food.  Alan came up with the brilliant idea to book places on a scheduled boat; we could then get off at Sandford Lock and go to the King’s Arms for refreshments. We would have two hours before catching the boat for the return to Folly Bridge.  This would cost only £10.80 per head (£10.30 for seniors!) and a 10% discount if the numbers reached 20.  Needless to say this stroke of genius was universally accepted. Many thanks to Alan for arranging this. 

 

Gift to FROGs from Elizabeth Brainch: Dr. Protheroe said that this money is in the UCARE account and will definitely be available when needed but that UCARE will have to amend its constitution slightly so that money it holds can go to charity as well as research.

 

 

Next meeting:  Monday September 5th at 6.30 at Maggie’s Centre.

 

 

Angela French August 15th

 

 

FROG Meeting 6 June 2011

Maggie’s Centre, Oxford

 

Minutes

 

1.                  There were 13 attendees at tonight’s meeting. Lucky for some!

2.                  MBE Clive brought along his medal for everyone to see. Some lovely photos of Clive and the family. Well done Clive!

3.                  Website We realised that Alan has been out of pocket to the tune of £10 per quarter for the maintenance of the FROG Website. Clive will speak to Gemma to see if this can be reimbursed.  

4.                  Ideas for social events The following suggestions were made for a future social event. Everyone to consider their favourite so that we can vote at the next meeting. - Pig roast - Greyhounds (Alan did raise his objections though) - Quiz night - Salter boat trip down the Thames. (Clive will look out the costs from last years trip) - Minibus tour of the Cotswolds (Tom offered to drive and be our guide) - Skittles N.B. It was also suggested that we invite the Bucks group to whatever we come up with. Clive reminded us that UCARE are still holding a generous donation from one of our members, Elizabeth, of £500 specifically earmarked for FROG group activities and I am sure that Elizabeth would agree that some of this may be used towards this event.

5.                  Suggestions for speakers Andy Protheroe suggested two people who have agreed to speak to the group. 1) Ljuba Stirzaker – PCT After some debate it was agreed that it would be more appropriate to defer this until later in the year and for a FROG sub group to meet Ljuba, armed with questions set by the entire group and then report back. Volunteers to be part of this session included John, Jean, Alan and Steve. Please think about what questions you would like answers to so that we can create a list. Clive will discuss this concept with Andy. 2) Geoff Higgins – Radiotherapist. Clive will ask AP to arrange for Geoff to be invited to the next available meeting Other suggestions for future meetings included; - A Neurosurgeon – Clive will attempt to contact a suitable candidate - A Macmillan nurse - Gemma Crane – Everyone would be interested to learn more about her role - Andy Protheroe – Apparently amongst all of his other talents Andy is well versed in immunotherapy.   

6.                  Clive’s brain procedure Clive provided the group with an account of his recent SRS (Stereotactic radiosurgery) treatment in Sheffield. This included; - 4 local anaesthetic injections (felt like bee stings but soon worked really well) - 4 self tapping screws were inserted and a cage attached around his head - 3.5 hours of treatment - High energy Gamma Rays - No pain, no headaches - The procedure will take approximately 3 months before results are known and Clive will be closely monitored by MRI scans. - SRS costs NHS approx. £5k and is not ordinarily funded by Oxon PCT so Clive’s clinicians had to apply to PCT for exceptional funding. Whereas, according to NHS Priorities Forum Meeting of 24th Feb 2010, open brain surgery costs £6.3k and contrary to NICE Guidelines, is under review to be withdrawn to save costs, with whole brain radiation costing £2.8k, a cheaper option but which carries an increased risk of knocking out good cells.

 

7.                  UCARE Garden Party Jean reminded everyone that the Garden Party at Broughton Castle would be taking place on the 18 June between 3pm and 6pm.

Tickets are available for only £15 from the UCARE website offering great value, not least because Jean’s Jam will be on offer! 4 Peaks Challenge David Cranston will be embarking on a four peaks challenge later this month. Here’s a link to his Just Giving web page should you wish to make a donation – tell your friends! http://www.justgiving.com/4peaks4ucare 

 

 

Next meeting 4 July, 6.30pm.

Steve Easton 

 

 

 

 

 

 FROG Meeting held on 4th April 2011

Minutes

 

 

There were 10 members (including one new member) of the present at Oxford’s Maggie’s Centre.  Gemma Crane, a uro-oncology specialist nurse and Dr. Andrew Protheroe, a Consultant Medical Oncologist based in the Churchill Hospital, Oxford, were amongst us for the first part of the meeting.

Clive (our regular Chair) sent his apologies for absence and in accordance with his wishes the chairing role continues to rotate with Steve kindly volunteering to take the lead this month.

 

Guest Speaker

This month’s guest speaker was Sandie Wellman, who co-ordinates a team of cancer consultants and fund-raising streams in the local area. She gave an excellent presentation on early phase cancer clinical trials, and expanded greatly on the articles in the media regarding the new Oxford Cancer Research Centre.

The slides used in the presentation can be read by clicking here.

 

Open Forum / Group Discussion

  • It was great to hear that one of our members had successfully used the new Cancer Drug Fund to obtain Votrient after being originally turned down by the PCT. However concern was raised about the overall funding budget as according to a leaked memo from the Department of Health it appears to be resourced from existing NHS funding and is not new money.
  • Steve informed the group that Clive Stone will be collecting his well deserved MBE shortly after the May meeting.
  • A reminder from Jean about an online petition that is running to “save the NHS”. It currently has over 250,000 signatories. If you wish to sign up you can do so by clicking here.
  • Don’t forget that our website address is www.frog.uk.net. Many thanks go to Alan for all his work in keeping it going.
  • Thanks also went to Puck for arranging our social event at The Trout, where 11  FROG members enjoyed some excellent surroundings and food!

Future Speakers 

Rose Woodward of the James Whale Fund has kindly agreed to speak at our May meeting – more details will be in the agenda closer to the date. Other possible speakers suggested was someone from the local Primary Care Trust, but it was agreed that any queries we may have for the PCT would need to be carefully posed by our group and that Rose may be the best person to approach for advice.

More information on Radiotherapy treatment was raised at the previous meeting, so this remains another potential topic to discuss.

 

 

 

 

 

FROG Meeting held on 7th March 2011

 

At this meeting we celebrated the 3rd anniversary of the foundation of FROG.

 

An enjoyable time was had by all, especially as Jim had brought in some delicious cakes (some shaped like roses and some like Frogs) to help celebrate our third birthday.