Author: ButterflyThyroid

Patient Surveys

September 6th, 2012

‘The Burden of Thyroid Cancer: The Patient Perspective‘ was presented by Kate Farnell at the European Thyroid Association meeting in Pisa in September 2012, and was viewed by 1,000s of doctors!

To coincide with Thyroid Cancer Awareness month (September 2011), we launched a brand new survey.

Survey results are the best way we can bring important information about us, and how our disease impacts on life, to the doctors and others involved in making treatment decisions.

Many thanks to all 243 patients for their kind responses.

New drug for Medullary Thyroid Cancer licensed

April 9th, 2012

In February 2012 Astra Zeneca received approval from the European Medicines Agency for Calpresa (Vandetanib), the first and only tyrosine kinase inhibitor licensed for the treatment of aggressive and symptomatic medullary thyroid cancer (MTC) in patients with unresectable locally advanced or metastatic disease.

The approval of Calpresa was based of the results of the ZETA Study, a placebo controlled clinical study of 331 patients with advanced MTC.

If you have advanced MTC, ask your Thyroid Cancer Care Team about Calpresa.

New Clinical Trial for patients with Advanced Medullary Thyroid Cancer

April 9th, 2012

An International, Randomised, Double-Blind, Two-Arm Study to Evaluate the Safety and Efficacy of Vandetanib 150 and 300mg/day in Patients with Unresectable Locally Advanced or Metastatic Medullary Thyroid Carcinoma with Progressive or Symptomatic Disease

10 countries, 34 sites plus seven back-up sites

Hopefully five UK centres – Cardiff, Christie, Royal Marsden, Barts and Newcastle – will be taking part
80 patients required, 14 months recruitment period expected

Inclusion Criteria of Interest:

  • Confirmed histological diagnosis of MTC
  • Unresectable locally advanced and/or metastatic
  • Hereditary or sporadic
  • Objective disease progression within the previous 14 months and/or Symptomatic

Currently awaiting MREC and MHRA approval in the UK so recruitment may be able to commence in June/July 2012

[April 2012]

 

HiLo clinical trial for Thyroid Cancer – Findings

January 9th, 2012

Allan Hackshaw, Deputy Director of Cancer Research UK, comments:

“Recommended treatment for most patients with differentiated thyroid cancer is surgery followed by a high administered dose of 3.7 GBq (100mCi) radioiodine ablation. However, a lower dose (1.1 GBq or 30 mCi) has advantages including a shorter stay in hospital isolation and lower risk of side effects, including the risk of a second cancer.

“Also, Thyrogen allows patients to continue thyroid hormone replacement during ablation, avoiding symptoms of hypothyroidism, but there was uncertainty over whether this could affect ablation success rates.

“HiLo was a large randomised trial to simultaneously address whether ablation success rates are similar using (i) either 1.1 GBq or 3.7 GBq, and (ii) either Thyrogen or thyroid hormone withdrawal. It was the first ever UK national prospective trial in thyroid cancer.

“Four hundred and thirty eight patients were recruited from 31 UK centres between January 2007 and April 2010. The trial showed that 1.1 GBq could be used instead of 3.7 GBq. Also, ablation success rates were not affected if patients had Thyrogen.

“There were fewer side effects with 1.1 GBq, and the quality of life and other hypothyroid symptoms before ablation were much better among patients who had Thyrogen (compared to those who had hormone withdrawal).

” The HiLo research team now recommend the use of 1.1 GBq with Thyrogen in routine practice.”

Professor Allan Hackshaw, Deputy Director
Cancer Research UK & UCL Cancer Trials Centre
Cancer Institute
University College London
5th floor, 90 Tottenham Court Road
London
W1T 4TJ

[January 2012]

Neck Check 2011 update

October 9th, 2011

At the beginning of 2011 Butterfly Thyroid Cancer Trust decided to host the first ever Thyroid Cancer Awareness Campaign in the UK: ‘Neck Check 2011’. The main objective was to raise awareness of this rare disease which is now one of the fastest increasing cancers globally. Various methods were to be utilised:

  • Production of promotional video for TV
  • Advertising campaign involving TV, Radio and Press
  • Development of dedicated Micro site
  • Production of promotional goods
  • Information leaflets
  • Banners, posters, power flags, and tee shirts

I am pleased to report that all elements came to fruition. A promotional wall was produced for use on Neck Check day in the largest shopping mall in Europe along with power flags, pull up banners and balloons. 3,000 information leaflets were disseminated in the mall, hospitals and GP surgeries. Everyone involved wore a Neck Check tee shirt.

We hoped that due to a robust advertising campaign involving TV, radio and the press that we would have a good response from the public on Neck Check day, 24 September 2011, but none of us were prepared for the phenomenal response that occurred.

At eight in the morning a queue began to form in the mall and by 9 am this was 300 deep. This was the case at all times throughout the day and people waited on average 90 minutes to have their neck examined by one of the 12 leading thyroid cancer clinicians who worked voluntarily until 5 pm.

A massive 1,000 necks were checked and 40 people were identified as requiring referral for further investigations such as ultrasound and biopsy.
A one-off fast track clinic was set up for these people in order that they could be seen within two weeks. We are still following their progress through the diagnostic process though many of those referred are not in our region.

We can safely conclude that our campaign was a massive success and that our objective was attained. Calls to the dedicated help line increased fourfold.
The video was viewed on YouTube four times more than the US campaign video which is amazing considering the difference in population size.

Please enjoy the photographs from the event!

Neck Check Day, 24 September 2011

Kate Farnell.
CEO, Butterfly Thyroid Cancer Trust
President, Thyroid Cancer Alliance

BBC Radio 4 Woman’s Hour item on Thyroid Cancer

September 6th, 2011

Listen again to BBC Radio 4 Woman’s Hour item on Thyroid Cancer
Thyroid cancer affects three times as many women as men and there are currently about two thousand new cases each year. Although it’s a relatively rare condition, the numbers diagnosed are increasing.
So what is thyroid cancer, and how is it detected and treated? Jenni is joined by Laura Moss, who is a Consultant Clinical Oncologist at Velindre Cancer Centre in Cardiff and by Helen Hobrough the Chair of The Thyroid Cancer Support Group in Wales.
(September 2011)