May 2013
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Newsletter  May 2013

To All Our Friends:

Welcome to our latest newsletter.  Once again, as always, we extend a huge thank you to everyone who continues to support AFRT. We continue to appreciate that there are enormous financial pressures in the world today but feel humbled by the interest and amount of time that is given to raise funds and awareness for our cause.  Thanks to your generosity we are able to continue with our funding and sponsorship of a researcher at the Royal Marsden Hospital.

The hospital is at the forefront of world wide cancer research. We had some very encouraging and positive news on our most recent visit to meet with the research team led by Dr Frank Saran (first left in the photo)  Together with the Institute of Cancer Research they have been instrumental in identifying an underlying cause of childhood Glioblastoma in a particular type of protein. We are very excited about this news.  It is a major breakthrough in the understanding of the behaviour of the nature of this vicious disease and another small, yet tremendously important, step towards finding an eventual cure. 

Further information about this discovery published in the journal Cancer Discovery March 2013 can be found on our website  www. afrt.org.uk

  It is all very complex to us but in the future it is looking that it may be possible to stop Glioblastoma cells from replication by controlling this part of the cell with targeted drugs. This opens up for the first time the prospect of an effective treatment offering hope to children with glioblastoma who currently only survive at most for a year from the date of diagnosis.

At the meeting our Trustees were able to spend time discussing the progress of our project. For a while we have wanted the money we are providing to not only sponsor research but also to include personal interaction between our researcher and patients. Help where it is directly needed to provide caring and informed hands on support for patients. Being able to talk to someone who understands what you are going through when diagnosed with a brain tumour, has time to listen and, most importantly, someone who knows the nature of the disease can make a world of difference to the sufferer and to their family. We are so pleased to be able to report that as a result of our sponsorship our research person is giving this direct interaction with patients.

 A letter from Dr Frank Saran, Consultant Clinical Oncologist and Head of Neuro-Oncology at The Royal Marsden Hospital

 Dear Team

 As you know, the Neuro-oncology unit at the Royal Marsden Hospital has been privileged over the last few years to have received substantial donations from the Alison Fracella Research Trust in order to enable us to provide patients with access to clinical trials and support them appropriately while on a clinical trial. 

 Primary malignant brain tumours constitute approximately 1-2% of all newly diagnosed primary malignant tumours each year and as such fall into the so-called category of rare cancers.  Unfortunately the outcome following the diagnosis of a primary malignant brain tumour still remains extremely poor, and very little progress has been made in this area over the last decades.  This is partly due to the underlying highly malignant nature of these tumours, but equally well to a significant underfunding into research and development in this area.  While small and limited progress has been made over the last ten years, the outcome of primary malignant brain tumours still lags significantly behind outcome improvements as seen in other diseases such as breast and prostate cancer. 

 As in many other areas, the lack of access to centralised funding has in many aspects been compensated for by the generosity of patients and carers affected by these tumours or by philanthropists, reflecting the enormous generosity of people living in the UK.  There are a number of ways to support research and development which hopefully will lead to clinical improvement in patient outcome at some stage for patients with primary malignant brain tumours.  The pathway chosen at the Royal Marsden Hospital does not so much focus on basic sciences given that progress in this area is extremely slow, and that only a very small number of projects funded will actually be of such clinical relevance to offer patients with malignant brain tumours access to better and/or improved treatments.  While it is important to try to understand the biology of these intrinsically diverse tumours, it is of equal importance that any novel treatment approaches are actually made available to patients in the clinical setting.  Given the current requirements to comply with good clinical practice (GCP) and the timely and correct acquisition of data obtained from patients participating in clinical trials, this can only be achieved if a closely cooperative and active research team is able to drive these issues.

 Within this context, while clearly clinical leadership plays an important role from the patient’s perspective, the support before and during the participation in any clinical trial is of utmost importance.  This support shapes not only the perception of patients undergoing “experimental” treatments, but helps equally to ease the additional treatment burden that comes with the participation in a clinical trial.  Over the last two years the Clinical Fellows working within the neuro-oncology unit at the Royal Marsden Hospital and a dedicated research nurse have done exactly that.  Our unit still allows patients with primary malignant brain tumours access to clinical trials both in the setting of newly diagnosed patients as well as those patients who have unfortunately undergone a further progression after first or second line treatment.  Excluding access to specific trials related to brain tumours associated with genetic disorders (NF1, NF2) which are treated in  four supra-regional specialist centres, the Neuro-oncology unit at the Royal Marsden Hospital hosts one of the largest clinical trials portfolios currently available to patenst with primary CNS tumours.

We have been one of the largest recruiters to a recently completed clinical trial in the first line setting of the most malignant form of brain tumour (glioblastoma).  The AVAGLIO study was a study randomising patients between the current gold standard treatment (i.e. the combination of radiotherapy and temozolomide chemotherapy) and the gold standard treatment with the addition of a modern biological agent (bevacizumab) targeting the tumour feeding blood vessels.  This trial has now completed recruitment and the early data of this trial have been presented to the world community at an international meeting in Washington at the end of last year.  In this trial over 900 patients were equally distributed between the two treatment options.  A significant improvement was obtained in the time to tumour regrowth from 6.2 months in the standard arm to 10.6 months in the arm with the addition of the new agent.  This overall represents a reduction of the risk of progression for these patients by 36% and is statistically highly significant.  Furthermore, it is important to note that the addition of the new agent did not noticeably increase the side effects experienced from this treatment, and that within the additional period of time patients maintained an overall excellent quality of life and personal independence.  It is too early to say whether this significant benefit seen in the time to progression will equally translate into an overall survival benefit and the final results are eagerly awaited for the later part of this year.

Furthermore, we have participated in a further trial targeting specific genetic abnormalities (EGFR) that are abnormal in the majority of adult patients with malignant gliomas.   We were the largest recruiter in the UK to this study and we are currently awaiting the review of the outcome of the addition of a specific agent stopping the growth mediated by EGFR in addition to the current standard of care.  We are also in the process of considering access to two clinical trials aimed at recruiting patients at the first diagnosis of a malignant brain tumour.  One will aim at the addition of immunotherapy to conventional chemo-radiotherapy and the second is a follow on study from the extremely successful AVAGLIO study looking at whether the continuation of bevacizumab beyond the time of first tumour reactivation is clinically beneficial to patients with these devastating tumours.  Thanks to the generous support we have received we have built a very strong link with our drug development unit allowing us to consider patients, who have failed the first line or second line of treatment, to have access to new agents which have shown great pre-clinical promise.  These trials target patients with recurrent disease who have exploited conventional therapeutic options. These treatments are given in the context of “phase 1” studies, which aim only to look at the maximum tolerated dose of a new agent rather than promising a significant ability to stop any further tumour growth.  We are eternally grateful to patients who volunteer to undergo these kind of clinical trials. To correctly document both side effects as well as any tumour activity in this context of experimental therapies is of paramount importance so that the entire neuro-oncology community can gather new knowledge in this area and disseminate the findings rapidly to the world.

In addition the Clinical Fellow post has been vital to liaise between the active standard treatment within the neuro-oncology unit and the drug development unit at the Royal Marsden Hospital, but also to interact with our local neurosurgical team for patients where the clinical trial encompassed a surgical component in addition to a drug component.  These trials would never happen without such dedicated support which on a day to day basis provides physical presence and support for both blood samples and specimens to be collected and processed in a timely manner.  From a patient’s perspective, one of the greatest benefits of having a dedicated research fellow and research nurse is the continuity of care and dedicated support they receive.  Furthermore, patients undergoing treatment in the context of a clinical trial volunteer to have an increased number of outpatient visits and potentially a number of extra investigations ;performed over and above the current standard of care.  This can pose both a psychological as well as a financial burden on some patients and discussing this on a regular basis with a person who knows their personal clinical needs and personal situation extremely well has been proven to be of the utmost help in managing this problems.  The general impression that both the Fellow and I, as head of unit, gain from is that the disease burden, both in physical and psychological terms, is significantly eased by an integrated approach with the presence of a dedicated clinical fellow.  I have received a number of extremely gratifying letters of thanks from patients who have undergone treatment in the context of one of the above mentioned clinical trials, specifically pointing out their extreme gratitude for access to such a dedicated and consistent team.  Several of those patients would not have been able to continue with treatment if it had not been for the support of the Fellow who has been so generously supported by your charity.

You can be reassured that your generous donation has been well invested and, in accordance with good clinical practice, all the data gathered will be summarised and published to the world community of neuro-oncologists both at national and international conferences and will help to shape and improve the outcome of future patients.

I remain therefore with gratitude for all your efforts and the support that you have given the unit and to the patients affected by malignant brain tumours.

Fund raising

Last Autumn we were extremely fortunate to be presented with a cheque for £500 by Penny Cook who had very kindly nominated us as one of her chosen charities during her year as Hadleigh Town Mayor. The Presentation Evening (with delicious nibbles and drinks !)  was held in Hadleigh Guildhall and gardens and we were able to extend a big thank you to Penny and her team for all their hard work on our behalf.

 

Just before Christmas we joined forces in a joint venture with the Brendan Noakes Trust to hold a Quiz Night. A very big thank you to everyone who came to support us (even if some people had a little difficulty in finding the right Quiz !) and to everyone who helped in any way to make the evening such a success.

 

 Our grateful thanks must also go to everyone who donated raffle prizes and to the Ansell Centre for giving us such a great rate for the evening. We were overwhelmed with some amazing prizes from both friends and local businesses.  It was a great evening, full of fun and laughter and a wonderful way to raise much needed funds.  Everyone said what an enjoyable time they had. We have had lots of requests to run it again this coming Autumn which we certainly hope to do.

                                     

 

The 49 Club Lottery

A very big thank you to everyone who continues to support this valuable source of funding. A list of this last year’s winners can be found on our website, congratulations to you all and a special thanks to those who very generously donated their winnings back to the Trust.  Incredibly there are a few numbers that have yet to make it as the bonus ball on the first Saturday of each month in the National Lottery.  Let’s hope they will feature in the months to come !

 

Following the success of our Chocolate Cake Mornings we are hoping to organise a  Vintage Tea Party event in the Summer and look forward to welcoming everyone for tea and cakes !

 

And finally………

We continue to be committed to helping to fund research into Glioblastoma and remain forever grateful to everyone who has made contributions in both time and money to our cause. Virtually every penny of money raised goes to the ongoing research project at the Royal Marsden Hospital. 

It is worth a reminder that brain tumours cut short the lives of more children, teenagers and adults under 40 than any other cancer. Survival rates are shockingly low in comparison with other cancers.

We firmly believe in the objectives of the Trust. If you can help us in any way please do get in contact with us.

 

Thank you

 

Andy Balchin, Robert and Sue Kettlewell and Graham Panton

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