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!

Latest news...

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Cancer patients’ support and choice of treatment is affected by where they live, says national audit

  • Thursday, 21 June 2012 22:29

Head and neck Cancer patients are receiving variable levels of support and treatment choice across England and Wales, results from a new national audit suggest.

Some cancer networks are unable to show evidence of patients receiving important aspects of care, including multi-professional support from clinical nurse specialists, dieticians, and speech and swallowing therapists.

The National Head and Neck Cancer Audit 2012 also shows that patients who have early larynx cancer, who should be able to choose between having laser surgery or Radiotherapy, appear to only be offered radiotherapy in the majority of cases in some cancer networks.

The audit is managed by the Health and Social Care Information Centre (HSCIC), commissioned by the Healthcare Quality Partnership (HQIP) and supported by the British Association of Head and Neck Oncologists (BAHNO).

It examined the treatment of just under 7,000 head and neck cancer patients diagnosed between 1 November 2010 to and 31 October 2011 in England and Wales.

It found the percentage of patients who had confirmation of nurse support ranged between cancer networks from 97 per cent to two per cent, for dietetic support from 72 per cent to zero per cent and for speech and swallowing support from 65 per cent to zero per cent.

The 750 patients with early larynx cancer – eight of the 31 cancer networks in England and Wales had no or minimal numbers of patients having laser surgery, suggesting that choice of treatment was not available.

Radiotherapy and transoral laser surgery have similar survival and voice outcomes in early larynx cancer. Whilst in a small number of cases clinical findings may influence treatment advice, patient choice should be a strong factor in treatment selection. The reason for the variation may be clinical preference, availability of suitably trained surgeons or resource availability.

The audit shows that of every 10 people diagnosed with a head or neck cancer, only seven will still be alive after two years. It also found:

The number of oropharynx cancer cases is rising and is now the most common type of head and neck cancer. This may relate to a rise in the number of cases where HPV (human papilloma virus) is a primary cause, rather than the more traditional causes of smoking and drinking.

Patients are waiting less time for radiotherapy treatment after diagnosis.

A bigger proportion of patients are having their care discussed by a multi-disciplinary team.

Key recommendations of the audit are commissioners should ensure that all head and neck cancer patients are receiving the multi-professional care they require.

Commissioners should ensure patients with early larynx cancer are being offered treatment choice. 

Networks should ensure equity of access is maintained for all patients.

Richard Wight, ENT consultant and National Clinical Lead for Head and Neck cancers, said: “About 7500 people every year in England and Wales have to cope with the difficult news that they have a head or neck cancer: a cancer that impacts on things most of us do without a moment’s thought: breathing, speaking, eating, drinking, swallowing and smelling.

“Every form of cancer is of course significant, but head and neck cancers are perhaps some of the lowest in profile when it comes to awareness on the public’s radar. Its treatments can be complex and significant support is needed to reap the benefits of treatment.

“The job of this audit is to not just to provide an up to date picture of head and neck cancer care. It is to help people understand this picture and ultimately to improve the care offered to patients and carers.”

The report can be accessed from June 15th at www.ic.nhs.uk/headandneck

Source: NHS

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IBTA E-News June 2012

  • Wednesday, 20 June 2012 09:06

Dear Friend

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

IBTA Magazine: The worldwide distribution of the IBTA's " Brain Tumour" magazine is in progress with individual copies having already been received in Canada, the USA, UK and Ireland. It is a major undertaking but if you do not receive a copy by about mid-July please register your land/postal details here.

ASCO: The IBTA distributed 250 copies of its magazine at the ASCO conference held recently in Chicago and were ably assisted at our stand in the Patient Advocacy booth by locals Mary Ellen Maher and Jean Arzbaecher. Demographics of who attended the ASCO meeting are not yet available but based on last year's analysis there were probably fewer overall attendees and consequently fewer present in 2012 equivalent to the approximately 774 professionals who indicated last year that they had an interest in CNS tumours.

In the presentations, posters and abstracts, attention was given to the results of the EORTC study of patients with anaplastic oligodendroglial brain tumours which showed a survival benefit for those receiving Chemotherapy (procarbazine, lomustine, vincristine) after radiation therapy, particularly those with a 1p/19q co-deletion. Also attracting attention were the results of the German NOA-08 trial of GBM or AA patients over 65 years of age. Temozolomide (TMZ) demonstrated non inferiority to radiation therapy (RT) in the overall population. For those with MGMT promoter methylation outcomes were better for TMZ versus RT. A commentator on the results suggested: "I would argue strongly that if you don't have MGMT results, you should not give temozolomide upfront". (See Page 15A here.) The IBTA, as a patient advocacy group, has some doubts about such an approach.

There was also general interest in Immunocellular Therapeutics' ICT-107, for which a Phase IIb trial is underway and in Tocagen's therapy. Among the posters there was interest in the first clinical presentation about Apogenix's APG101.

PhRMA Medicines in Development - Brain tumours: In its annual report on new therapies being developed by the pharmaceutical industry the US PhRMA organisation lists 62 for brain tumours (some in conjunction with other tumours), compared with 121 for lung Cancer and 120 for leukaemia. The therapies listed are those initiated by the pharmaceutical industry and do not include investigator-led studies initiated by researchers and clinicians in hospitals and other institutions.

Conferences: IBTA co-director Kathy Oliver co-chaired with Gemma Gatta (INT Milan) a session on the RARECARENet Project at the recent ECPC (European Cancer Patient Coalition) Masterclass in Reiti, Italy.  Following the Rieti Masterclass Kathy is also attending the first ever chordoma patient meeting in Amsterdam after which there is a treatment conference. Any of our readers with a particular interest in chordomas could contact Kathy. The IBTA will also have a presence at the British Neuro Oncology Society conference in Manchester (UK) and at the International Symposium on Paediatric Neuro-oncology being held in Toronto next week.

CT scans in childhood: Researchers have identified a small but significant risk of brain tumours arising from cumulative doses of ionising radiation administered to children and recommend that "radiation doses from CT scans ought to be kept as low as possible and alternative procedures, which do not involve ionising radiation, should be considered if appropriate".

Therapy developments and new discoveries: e therapeutics PLC has announced a Phase 1 trial of its compound ETS 2101 in Glioma patients and patients with brain Metastases. One of its attractions is its ability to cross the blood brain barrier. City of Hope, which is located in California, has been granted a $5,217,004 USD early translational research award by the California Institute for Regenerative Medicine (CIRM) to support the development of a T cell-based immunotherapy that re-directs a patient's own immune response against glioma stem cells. Proponents of Novocure's TTF therapy have been pleased at an unexpected theoretical physics paper by a scientist in Israel which is said to reinforce the underlying theory of the novel approach. IsoRay has announced that doctors have "performed  the world's first Cesium-131 brachytherapy seed sutured mesh implant on a female patient suffering from a recurring meningioma Tumor". Cellceutix Corporation has announced its belief that its compound Kevetrin has potent anticancer activity in glioma. Scientists in Singapore have found that GBM patients with high levels of parkin (a type of protein) survive longer, which has led them to focus on  the molecular examination of tumours to identify this component. A group of researchers at the University of Hyderabad (India) have discovered a method to increase the shelf life and efficacy of temozolomide.

CNS PNET tumours: In an international collaboration involving the collection of 142 CNS PNET (primitive neuroectodermal) samples from 20 institutions in nine countries researchers have identified three molecular sub groups of these tumours and concluded that "LIN28 and OLIG2 are promising diagnostic and prognostic molecular markers for CNS PNET that warrant further assessment in prospective clinical trials".

Patient left in pain: The Scottish Public Services Ombudsman has upheld a complaint that a brain tumour patient was not provided with adequate care or medication when he died in pain in 2010. The patient was only administered a mild sedative and given an oxygen mask when his head swelled so badly that his ears doubled over.

Legal case about neurosurgery: Further to an earlier report in the E News a decision has now been delivered in a West Australian case about the nature of advice given to resect or not resect a young person's brain tumour some years ago. In a 176-page written decision a Perth (Western Australia) District Court judge has stated that "he was not persuaded that other neurosurgeons acting reasonably at the relevant times between 1996 and 1999 would have attempted the treatment option of resecting (a patient's brain) tumour," which is what the patient and his parents argued in their recent law case was advice that they should have been given. The case was brought against a retired neurosurgeon and a retired oncologist for their advice in 2000.

Frank Boeye: The IBTA was saddened to learn of the death on 27 May of long-term survivor Frank Boeye who led the Belgian brain tumour group Werkgroep Hersentumoren which he established in 2005 and who was a strong and hard working advocate for brain tumour patients, their families and caregivers. Frank was diagnosed in 1997 with an AA3/GBM. The group will continue under its new leadership which is profiled in the latest IBTA "Brain Tumour" magazine. Frank will be very much missed in the Belgian and international brain tumour community.

Unsubscription method: Quite a large number of readers receive the E News as a result of original recipients forwarding it to them. The E News has a link whereby the recipient can unsubscribe from receiving future issues, however, if such a recipient clicks on the link in the copy they received they will unsubcribe the email address of the person who forwarded the E News to them. In those cases please inform the person who forwarded the E News that you do not wish to receive future copies and do not use the unsubscribe function.

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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Survivors and Thrivers Week 3 - Liz, Astrocytoma Survivor

  • Wednesday, 13 June 2012 22:32

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

It's also the very third 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 2:

It is our pleasure to introduce you to Liz and her army of inspiration.

I hope…

I hope I continue to put things in perspective.
chasethesun1.jpg
I used to be a workaholic, and I’m still an “achieve-aholic,” but after my first Seizure and then a brain Tumor diagnosis, it was hard for me to slow down, focus on my health and heal. I actually felt ashamed that I lost my job and was on disability. I was embarrassed that I lost my health insurance and that my friends had to put together fundraisers to cover my medical bills. (I now realize that my friends were glad to have a way to help me.)

When my tumor grew back and I had a second brain surgery something in my brain clicked (pun intended). I thought, “Holy sh-t. This is for REAL.” I knew that my job did not define me. What did define me was my strength of character and how I took care of myself. And I needed that outlook after my second surgery. I had to relearn how to walk and balance. I had to deal with seizure maintenance. And I was put on a Chemotherapy pill called Temodar for 24 months.

Now that I’ve been off Temodar for nearly a year, I sometimes get caught up in my work/busy life. Keeping in communication with other brain tumor patients and Cancer survivors keeps me grounded and reminds me of what is important.

My husband embodies the term “unconditional love.”


I wish…

I wish I could take my husband to Disneyland and a baseball game all in one day. OMG, he would explode with happiness. (Technically, this is possible–but he hates the Anaheim Angels. They’d have to be playing against the Oakland Athletics.)

Brain tumors are hard on the caregiver, and my husband was only my boyfriend of a year and a half when I was diagnosed. Instead of running away, he jumped in and took care of everything. We didn’t even live together at the time… I had to tell him what all my Internet passwords were so he could log into my accounts and make sure all my bills were paid. He made my food, and drove me to all my appointments. I couldn’t drive for 11 months. He did everything.

My husband embodies the term “unconditional love.” I am so grateful for him, and it means a lot to me when I can do something amazing for him.

I dream about…

I dream about Logan sometimes. (I included a photo of Logan.)
Liz's friend, Logan

Logan is a friend of mine who was diagnosed with brain cancer, and died two years before my diagnosis.

Before Logan, I didn’t know anyone with brain cancer. I didn’t know anyone in their 20s could even get cancer! And brain cancer sounded so horrible, the worst of the worst. Logan was alive for three years after his diagnosis. He had a medulloblastoma.

After my diagnosis, I thought about Logan so much that I started dreaming about him. One night, in the months between by first and second brain surgery, I dreamt that Logan told me that I wasn’t going to die (from brain cancer). Something about that dream was pretty powerful to me. It is always NICE to think that the people you’ve lost are looking out for you from the other side. (I wrote about that dream on my blog.)

I am (be)…

 I am passionate about using my “nerd skills” to tell stories of change and inspire engagement among the brain tumor community.

Brain tumor diagnoses and treatment 

(I included a photo of me and my MRI.)

Craniotomy 1: September 2008
Diagnosis: Grade 2 Astrocytoma with gemistocytic properties (borderline grade 3)
Craniotomy 2: February 2009
Damage to left parietal lobe after second craniotomy, right-sided sensory changes
Treatment: Temodar chemotherapy for 24 months
Parietal lobe Epilepsy

Favorite quote…

 ”First save your life. Then worry about everything else.” – Dr. P., my neurologist (I included a photo of me with my neurologist).

 

Three things you’d like to share…

1. I’m ambidextrious.
2. I dislocated my shoulder seven times in 2009 and had to stop chemo for six weeks to have a surgery.
3. As of this year, I am serving on the medical advisory board for the National Brain Tumor Society. In May, I am going to Washington, D.C. to lobby our elected leaders about the importance of brain tumor research.

If you would like to contact Liz, you can reach her via her blog, thelizarmy.com and on Twitter @thelizarmy.

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

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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Survivors and Thrivers Week 2 - Stephanie, Meningioma Survivor

  • Thursday, 07 June 2012 02:32
  • Last Updated ( Thursday, 07 June 2012 02:40 )

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

It's also the very second 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 2:

"Unless someone like you cares a whole awful lot nothing is going to get better. It's not." - Dr. Seuss

It is our pleasure to introduce you to Stephanie – a brain Tumor survivor, who had brain surgery two years ago to remove a baseball size tumor.  She not only is an inspiration to the brain tumor community, she is an inspiration to us all.  Thank you Stephanie for sharing your story.  You can read last week’s profile here, about a brave man named Tom McLain, who is also an inspiration.  If you are interested in participating, you will find information at the end of the post.

This is Stephanie’s story in her own words.


“I am stronger now than I was before my diagnosis.” – Stephanie

I hope…

I hope to achieve my dreams and not take life for granted. I also hope that in my lifetime I will see researchers find a cure for brain Cancer and brain tumors.

I wish…

I wish love, happiness and patience to all of those suffering with this disease and the caregivers, family and friends who help them out. I know I could have never gotten through this without the support of my father and my aunt. Plus all of the love and support of my friends who I work with, friends from school, and friends online.
"You never know what you mean to people until they band together to send prayers, good wishes and good thoughts to you during your recovery." - Stephanie

You never know what you mean to people until they band together to send prayers, good wishes and good thoughts to you during your recovery. I never took them for granted per se, but two years later, I know what I mean to them and give it back freely. They even set up a facebook group for me: https://www.facebook.com/groups/105485876149115/

I dream…

I dream about living life to the fullest no matter what. I was like most people going through the daily motions of life and then BAM! It hits you right in the face. I thank God every day for being here and I think I still have so much left to do — maybe it’s bringing brain tumor awareness to everyone I know and am going to meet so we can end this horrible disease.

I am (be)…

I am stronger now than I was before my diagnosis.
"I am stronger than I was before my diagnosis." - Stephanie

Artwork by Jennifer Pick.  Click on this link to go directly to the artist’s website.

In the middle of all of this, I was getting my Associates Degrees in Network Administration and Cisco Telecommunications. I had to drop the spring semester and I was only two semesters away from graduating. My Cisco teacher allowed me to make up the class I dropped in the spring so that I could stay with my section for the fall class. She was trying to show me that she believed in me and that I could do it. I rose to the occasion and showed her how determined I was to get back to my so-called normal life. I got a B in both sections.

Diagnosis and Treatment…

My brain tumor diagnosis was a menigioma. For those of you who know about these tumors — they are usually small in size and are benign. Mine was the size of a baseball, required nine hours of surgery to remove it, and is a Grade II Tumor defined by WHO (World Health Organization). My neurosurgeon said it was benign in nature, but Malignant because of the sheer size. He put it bluntly to me one day while he sat in my hospital room, “You shouldn’t be sitting here today, by all accounts you should be dead.” I now have a titanium plate in my head covering half of my forehead all the way back to the top middle of my head. I also had radiation that made all of my hair on the top and sides of my head fall out. It was one thing to know it could happen and another thing to be standing in the shower pulling clumps out while washing my hair. I now have to take Seizure medicine twice a day and my brain is still swollen.

Favorite quote…

Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” ~ Dr. Seuss

(I’d never heard it before and @uvmer tweeted it the first time when I joined #braintumorthursday. I just loved it.)

Three things I’d like to share…

1. Don’t think “It can’t happen to me,” because it can. I’m the perfect example of that.
2. Just because people have a benign brain tumor — they are not lucky. It’s still a tumor in your head and it messes with your brain function. (No offense to those who have malignant tumors. I always say there are people worse off than I am.)
3. I just celebrated my two-year anniversary of my brain surgery on St. Patrick’s Day 2012. So far there is no sign of the tumor or sign of regrowth either.

Photo by (c) Megan Oteri - All rights reserved

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

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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Global cancer incidence predicted to increase by 75 per cent by 2030

  • Friday, 01 June 2012 16:54

The number of worldwide Cancer cases is set increase by 75 per cent in the next two decades, according to researchers in France.

The scientists predict cancer cases will increase from 12.7 million in 2008 to 22.2 million by 2030.

The rise will be even greater in the developing world, with cases in the poorest countries projected to increase by more than 90 per cent by 2030.

The findings, published in the Lancet Oncology, suggest that countries must continue to invest in research to prevent deaths from cancer.

Scientists at the International Agency for Research on Cancer (IARC) in Lyon looked at how economic development affects incidence and death rates of different types of cancer.

Some types of cancer, such as cervical cancer and stomach cancer, are declining in more developed parts of the world such as Europe. But the reduction is likely to be offset by a substantial increase in other cancers such as breast, prostate and bowel cancer in these countries.

Jessica Harris, health information manager at Cancer Research UK, said: "These statistics remind us it's more important than ever to invest in ways to reduce the number of people that develop and die of cancer across the world.

"If we're to beat cancer, we need continued research to find ways to prevent, diagnose and treat the disease. And governments, health organisations and individuals need to work together to put that research into practice - to prevent cancer through promoting healthy lifestyles, and to encourage and enable early diagnosis.

"Cancer Research UK is leading the way in all these areas - and in the UK, the positive side to this story is that, although the number of people with cancer is increasing, survival rates for the disease have doubled over the past 40 years."

Researchers used the Human Development Index (HDI) to measure development levels in different countries.

They found that countries with a low HDI, such as those in sub-Saharan Africa, had a higher incidence of cancers associated with infection - such as cervical cancer, liver cancer, stomach cancer and Kaposi's sarcoma.

In countries with a higher HDI - such as the UK, Australia, Russia, and Brazil - there were more cases of cancers associated with smoking, including lung cancer, as well as those linked to reproductive risk factors, obesity and diet such as breast, prostate and bowel cancer.

Copyright Press Association 2012

Reference

  • Bray, F. et al. (2012). Global cancer transitions according to the Human Development Index (2008–2030): a population-based study The Lancet Oncology DOI: 10.1016/S1470-2045(12)70211-5

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