Welcome to BT Buddies

Founded in March 2009 Brain Tumour Buddies is a national charity committed to providing information and support to anyone affected by a high grade brain tumour in the UK.

Our website provides in-depth, accurate and up-to -date information on all aspects of dealing with a brain tumour and has been compiled from a wide range of sources. If you can't find the information you are looking for please contact us and we will do our best to help.

We also offer support to patients, carers, relatives and friends in a variety of ways including in our forum, via email and on our Facebook and Twitter pages.

BT Buddies is able to continue providing information and support thanks to kind donations and generous fundraisers. Funds raised for BT Buddies also go towards funding research into high grade brain tumours.

If you, or someone you know, is interested in fundraising for BT Buddies you can contact us at fundraising@btbuddies.org.uk or call 0845 459 4101. We will also be launching a new section on the BT Buddies website in the next couple of weeks which will include information on how you can raise funds for BT Buddies, resources to help with your fundraising and suggestions for events you can take part in. Watch this space!

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Survivors and Thrivers - Tom McLain

  • Thursday, 31 May 2012 06:03
  • Last Updated ( Thursday, 31 May 2012 06:16 )

Today is #BrainTumorThursday on Twitter - checkout what this means HERE.

It's also the very first day of our weekly Survivors and Thrivers articles.

What is Survivors and Thrivers?

Through our ongoing commitment to raising awareness via Twitter each Thursday with the hastag #braintumorthursday, we have had the honour of meeting a lady called, Megan. Megan's Mum has a Brain Tumour and so Megan knows just how important raising awareness is, but, she also knows how sharing survivor stories can inspire others walking the brain tumour road.

We have decided to partner with Megan and her blog http://memomuse.wordpress.com/ and each Thursday we will be sharing a story from a brain tumour survivor.

Survivor and Thriver Week 1:


Today, it is our pleasure to introduce you to Tom McLain —  husband, father, friend, family man, and overall awesome person — who also happens to be fighting (and doing a great job might I add) brain tumors.  These are his words, in his voice.

“What then do you do with the statistics?  I choose to think of them as merely a guide.  With my brain Tumor, I choose to believe that my chances of survival are phenomenal.”  ~ Tom McLain

I hope…

How can you have a brain tumor and not hope for a cure?  Hope does not completely drive me, because it does have to be tempered with reality — the statistics are often grim.  But even in the face of grim statistics, one can always hope and pray about being an outlier, being the one patient who brings the average up by living far longer that the average or even the top number in a range of years.  The companion to hope is faith in God.  As I have said before, “As weapons against Cancer, faith is the bow and hope is the arrow.”


I wish…

It is my sincere wish that no one else ever has to face a diagnosis of a brain tumor.  One of the wisest things said to me at the beginning of my journey was the observation that the central question was not, “Why me?” but “Why not me?”  That shifts the focus from internal to external and allows you to make wishes for others.  My hopes and dreams tend to be about  me and my family and my wishes tend to be broader in scope.

I dream…

 With the diagnosis of a fatal disease and no clear answer as to how long I will survive, I dream about the events in life that I may miss.  I have three daughters, so I dream about walking them all down the aisle to be married.  I dream about grandchildren, being convinced that I will be an awesome grandfather.  I dream about being financially secure enough to retire while I still have enough health to fully enjoy life with my wife and family.

"Never underestimate the power of God to use your flimsy self to his glory." - J.E.Oppenheim

I am (be)…

While it may seem entirely strange to most, I am in many ways thankful for my brain tumor.  Before the tumor came along, I thought James 1:2-4 was a completely insane passage in the Bible:

2 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. (NIV)

"The most difficult time in any cancer battle is the time between diagnosis and deciding on a plan of attack." - Tom McLain


  How on earth could you ever look up on life’s problems as a joyful experience?  But then I began to realize that I would have a phenomenal opportunity to watch God work, both in my life, and in the lives of others around me.   As explained by American author and brain tumor patient, J.E. Oppenheim, “Never underestimate the power of God to use your flimsy self to his glory.”  So far, the tangible benefits of my cancer have been that I have been taught faith, hope, courage, resilience, and purpose.

"So far, the tangible benefits of my cancer have been that I have been taught faith, hope, courage, resilience, and purpose." - Tom McLain


It would be unfair of me to suggest that I have fully adjusted to my “new normal.”  The swirling effects of the tumor — chemo, maintenance drugs, being a male over 50, and possible radiation damage — do provide for some unevenness in my daily approach to life.  If fact, you could easily encounter me on a given day and conclude — “This cannot be the same guy.”

Diagnosis and treatment…

As for the tumor itself, a mass was detected in an MRI at the end of May 2009.  During the first week or so of June 2009, I had a brain biopsy and it was determined that my tumor was an anaplastic oligodendroglioma.  Not only was that good news because they are slow-growing tumors, but I also had what is known as a 1P, 19Q chromosome in the tumor cells which made them more susceptible to a particular chemo drug called Temodar.  On June 22, I turned 50, so you could say the tumor was my birthday present!  After getting a couple of consultations, it became clear that surgery was not an option, so we began Temodar in July 2009.  Eighteen rounds later, I finished Temodar in February 2011.  No too long after that, I started targeted brain radiation and completed that in July 2011.  The net result is: that as of today, my tumor is smaller and stable!

"The net result is: that as of today, my tumor is smaller and stable!" - Tom McLain

In terms of a favorite quote, there are many that come to mind.  There is actually a website that has been kind enough to add a few of my quotes to those of others in the brain tumor community and other cancer sufferers.  I go there frequently for inspiration.

https://sites.google.com/site/tummorwarrior/home/quotes-about-cancer

If you are a brain tumor patient or survivor and would like to share your story, please CLICK HERE to complete our questionnaire.

If you wish to get in touch with Tom, CLICK HERE and we will pass your message on asap.

Thank you for tuning in today and supporting #braintumorthursday.  We look forward to seeing you here at www.btbuddies.org.uk/surviving and www.memomuse.wordpress.com every Thursday for #Brain Tumor Thursday and on Twitter every Thursday.  Thank you for your time.

Hope. Wish. Dream. Be.

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Charlie's curls cut for charity

  • Friday, 25 May 2012 17:29
  • Last Updated ( Friday, 25 May 2012 17:54 )

 

16 year old Charlie Anderson, a Freman College student from Wyddial, had his trademark curls clipped back in front of fellow pupils on Tuesday (May 8) for Brain Tumour Buddies.

Charlie’s mum Penny explained: "My nephew was diagnosed with a brain tumour three years ago and we have always been very close to him.

"My family come from the north east of England where growing your hair long is just not done and Kevin used to rib Charlie about it, calling him a southern softie."

Charlie pledged to cut his hair for the charity of Kevin’s choice when he last saw him.

Charlie said "on the 30th of March 2012 my cousin in law, Kevin, tragically passed away from a brain tumour. He was easily one of the nicest people I have ever, ever met, and I'm so happy to have had the honour of him being in my life. He would never complain, even whilst he was ill, he would always put others before him. 

"I just keep thinking to myself how unfair it is. And although a cure for Cancer is a long way off, I think the care a patient gets whilst ill is just as important as a cure, especially if it's the last few years of their life."

He added "Brain Tumour Buddies were there for Kevin. And I want to do my bit, and pay them back for all their hard work, so they can continue to help others in the future."

With Charlie's afro like hair now NICE and short we can finally share the news that his special haircut has raised an astonishing £3,648.96 for BT Buddies!!

Natalya, Andrew and the BT Buddies team would like to say a massive thank you to Charlie and all those who helped him to raise such an amazing amount!

You can read more about Charlie's fundraising here and visit his Justgiving page here.

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Join us for #BrainTumorThursday on Twitter

  • Wednesday, 23 May 2012 21:01
  • Last Updated ( Wednesday, 23 May 2012 21:54 )

Every Thursday people from around the world wanting to raise awareness of brain tumours come together on Twitter and tweet brain Tumor facts/statistics and stories all day long in the hope that we reach as many people as possible who might not normally hear anything about brain tumours.

For the first time we are sharing a live feed of the very latest tweets using the hashtag #braintumorthursday and we'd love for you to join us! Checkout the tweets below, retweet any of them or write your own using #braintumorthursday and hopefully we'll see you this Thursday!

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IBTA E NEWS MAY 2012

  • Wednesday, 23 May 2012 20:20
  • Last Updated ( Wednesday, 23 May 2012 21:55 )

Dear Friend

If you are having difficulty in reading this version please go to the Web version here.

ASCO: The Annual Scientific Meeting of the American Society of Clinical Oncology (ASCO) will be held during 1-5 June at Chicago. There are 231 abstracts with the keyword "CNS" in their title. Click here for access to the list. This is a link to the CNS sessions. The IBTA will have a presence in the ASCO Patient Advocacy booth (No 3005 - see here for map) and will have copies available of the just-published 2012 edition of " Brain Tumour" magazine (see below).

IBTA magazine: 12,000 copies of the 2012 edition of "Brain Tumour" magazine have been printed in the UK ready for free worldwide distribution to recipients in 106 countries. This 140-page publication contains over 80 interviews, articles and reports of broad interest, plus a special A2-size wall chart/poster of progress in brain tumour treatments prepared originally by Dr Susan M Chang for ASCO in an on-line format. Copies of the magazine will be posted from Europe to all those for whom we have a postal/land address. If you do not receive your copy by early July, please convey your details via this on-line form.

EU Access Index: Rare Cancers Europe aims to develop by the end of this year a Rare Cancers EU Access Index, measuring access to rare Cancer treatment and care in the 27 EU Member States. The index will include data on a pre-defined set of indicators and will help to better assess and compare the situations in individual countries. Of the seven rare cancer types selected for the pilot study, paediatric and adult Central Nervous System (CNS) tumours are two of them.

PNET tumours: US researchers have identified a possible connection between mandated folic acid fortification of foods and a reduction in the incidence of PNET (primitive neuroectodermal tumors).

Twins: An adult Australian who was suffering from persistent headaches convinced his identical twin brother (who was not experiencing headaches) to have an MRI during which a 4 cm brain tumour was discovered in the base of the brother's skull (i.e. the twin who had no symptoms). Doctors are puzzling over the connection.

Long term brain tumour survivors: The recently published IBTA magazine contains a story based on interviews with two long-term GBM survivors. This is a subject of particular interest to Dr Virginia Stark-Vance from Texas (email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) who intends to look at long term survivors from among those with PCNSL, anaplastic astrocytoma, or glioblastoma brain tumours.

Xerecept: Celtic Pharma has announced that it will present the findings from a Phase I/II study of Xerecept for paediatric neuro oncology patients at the International Symposium for Paediatric Neuro-Oncology (ISPNO) meeting in Toronto during 24-27 June. Xerecept is a dexamethasone-sparing alternative. There have also been talks with the FDA about a follow-up study. It may also be relevant for the adult brain tumour population and is at a Phase III stage for that group. It is a pity that there is not a similar manufacturing imperative for trials to be instigated of boswellia as a dexamethasone-sparing supplement or substitute. The IBTA will have a presence at the ISPNO meeting.

British Prime Minister: The British Prime Minister Mr David Cameron sent a hand-written response to a UK couple who lost their young daughter to a brain tumour and who had approached him to support more funding into the causes of brain tumours. Mr Cameron referred to the death of his own son, Ivan, from cerebral palsy who he "misses every day".

DCVax-L immune therapy: Northwest Biotherapeutics has advised that it now has 41 US clinical sites for the trial of its immune therapy for GBM tumours and plans to have 60 sites in the US and Europe by late 2012. The FDA has accepted an amendment of the trial, which is now designated as a Phase III trial. Earlier in May it announced that it had received a grant of $5.5 m from the German Saxony Development Bank for 50% of the costs for manufacturing in Germany and for its GBM trial to include 30 clinical sites in Germany.

Melanoma Metastases: A report published in the Lancet of a dose escalation study for dabrafenib used in people with melanoma and brain metastases showed that nine of ten patients had a reduction in the size of their brain lesions but the tumours did eventually progress.

NovoTTF therapy: The European Journal of Cancer has published the results of a phase III study of the use of Novocure's NovoTTF therapy in recurrent glioblastoma, comparing it with physician's Chemotherapy choice. The authors concluded: "No improvement in overall survival was demonstrated, however efficacy and activity with this chemotherapy-free treatment device appears comparable to chemotherapy regimens that are commonly used for recurrent glioblastoma. Toxicity and Quality of life clearly favoured TTF." In mid-may the company announced the launch of a dedicated US-focussed website for the use of the therapy for recurrent glioblastoma

Genetic causes of GBM: According to Dr Michael Berens (Director of the Translational Genomics Research Institute - TGen -  Cancer and Cell Biology Division) a $4.5 m grant from the US National Institute of Health to a multidisciplinary search led by TGen will help "... mine vast amounts of data to come up with possible cancer vulnerabilities and the most promising ways to attack GBM".

Wrong operation: A former paramedic has been awarded a seven figure sum after a Coventry (UK) surgeon removed the wrong part of his brain in an operation intended to remove a brain tumour which, on later analysis of the patient's blood test results, did not need removal and could have been managed with medication.

Paediatric brain tumours and diversity: According to an article in Cancer Cell paediatric brain tumours preserve specific characteristics of the normal cells from which they originate and are more diverse than previously believed. Identification of the origin of the tumour may help to develop better markers and treatment options.

Glioblastoma cell migration: Researchers at John Hopkins (USA) have identified the protein NKCC1 as assisting in the migration of glioblastoma cells and have slowed its migration in laboratory experiments using the diuretic bumetanide.

NeuroBlate System: Monteris Medical has secured $9m funding to further develop its NeuroBlate System (formerly AutoLITT) in North America. The system is used for MRI guided neurosurgical ablation of brain tumours.

P140K: In a small experiment involving only three glioblastoma patients US researchers have found that "transplanted P140K-expressing hematopoietic stem and progenitor cells are chemoprotective, potentially maximizing the drug dose that can be administered."

ICT-107: ImmunoCellular Therapeutics will have two posters at the ASCO conference in Chicago reporting on its ICT-107 therapy for brain tumours. In an investor-related interview on 10 May the CEO Dr Manesh Singh said that the company might reveal more information about its brain tumour trial "in the next few weeks".

Ketogenic diet: Dr Adrienne Scheck and colleagues from the Barrow Neurological Institute (USA) have authored an article which found in animal studies that a ketogenic formula KetoCal (KC) "suggests that cellular metabolic alterations induced through KC may be useful as an adjuvant to the current standard of care for the treatment of human Malignant gliomas".

Generic Temozolomide: The Mumbai-based generic drug producer Cipla has reduced the price of its Temoside brand of temozolomide.

avastin: Taiwan's Bureau of National Health Insurance has decided to cover the cost of Avastin for brain tumour patients. Meanwhile, a US researcher has found in a small study that there could be a correlation between the use of Avastin for recurrent GBM and the risk for secondary gliosarcoma.

Misdiagnosis: According to a media report "A teenage girl with a brain tumour the size of a golf ball was repeatedly turned away by doctors who told her she was just homesick. Megan Thomson, 20, had just begun a course at Leeds Metropolitan University when she presented herself to doctors complaining of headaches and trouble walking. Megan's symptoms worsened as she was repeatedly told by doctors she was homesick, stressed or partying too hard."

Film and Video: A film about a man's battle with a brain tumour "Stopped on Track" won the best film award at the German Lola-Gala in Berlin. In a 30-minute video story about his own brain tumour experience UK resident  Peter Wilkinson talks about the need for more research and lobbying and greater awareness. Brain Tumour Alliance Australia has uploaded to You Tube presentations made at a recent brain tumour forum held in Sydney.

Thank you for your continuing support.

 
This e-mail address is being protected from spambots. You need JavaScript enabled to view it (Chair and Co-Director)                                     
International Brain Tumour Alliance IBTA 
www.theibta.org

This e-mail address is being protected from spambots. You need JavaScript enabled to view it (Co-Director)
PO Box 244, Tadworth, Surrey
KT20 5WQ, United Kingdom
Tel:+ (44) + (0) + 1737 813872
Fax: + (44) + (0) +1737 812712
Mob: + (44) + (0) + 777 571 2569
 
The International Brain Tumour Alliance is a not-for-profit, limited liability company registered in England and Wales, registered number 6031485.  Registered office: Roxburghe House, 273-287 Regent Street, London W1B 2AD, United Kingdom.  All correspondence should be sent to the Co-Directors address above, not to the registered office.

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Inspirational Callum picks up Little Hero award

  • Wednesday, 23 May 2012 19:35
  • Last Updated ( Wednesday, 23 May 2012 20:09 )


In October 2011 BT Buddies was honoured to be able to present our inaugural Inspirational Young Person of the Year award to an amazing 6 year old in recognition of all he does to help his ill Mum.

Callum Hart offers vital support to his mum Debbie White, who is battling a Brain Tumour. He was just two when his mother was first diagnosed but has shown maturity beyond his years in dealing with his mum’s condition. Young Callum comforts his mum and calls for help if she takes unwell or has a Seizure at their home.

And now the Daily Record has recognised his efforts by presenting Callum with a Our Heroes award at a star studded event earlier this month.

The event honoured people across Scotland that have gone above and beyond to help others and we are thrilled that players from Callum's favourite football team, Celtic, were able to present Callum with his award. You can read more about the award ceremony here.

Everyone at BT Buddies would just like to say a BIG congratulations to Callum on this latest award, you deserve it 'wee' man!

The BT Buddies Inspirational Young Person of the Year award will now be given out annually and named the Callum Hart award, in Callum’s honour.

Read more...

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