Thursday, 29 October 2015

First day at EADO

EADO overview of last four years achievements in immunotherapy: ipilimumab, nivolumab and pembrolizumab. Good to see again the confirmation of their efficacy in melanoma.
(to be continued)

Wednesday, 28 October 2015

New melanoma advocates at Quickstart pre- EADO workshop in Marseille

Today has started Melanoma QuickStart pre-EADO workshop organized by MPNE and Melanome France around EADO conference.  

I was glad to meet there 
Gilliosa Spurrier (Melanome France), Fredrik Östman (Sweden), Gislaine Cramers (Stichting Melanoom, Netherlands), Antonella Romanini (ACM, Italy), Anca Andronic (Melanom Romania), Kacie King (Belgium), Henriette Sandven (Norway),Corinne Forest (France), Debora Podestà (Italy), Gudrun Uthaug (Norway) and Martina Kiehl (Germany). 

In total 15 patients, carers and patients advocates from different countries participated to the workshop and will attend EADO Congress in Marseille (28-31 october), learning about the new treatments landscape in melanoma and how to share the information with their own national groups. 

 Presentations and discussed subjects - to be completed 

Vitiligo and clinical response to pembrolizumab

Interestingly for patients on pembrolizumab, vitiligo (white spots on the skin) seems to indicate a positive response of the drug. Good news to me at least :)

Caroline Roberts put it very cautiously that "at least it is not very bad [for the patients]" at EADO 2015. 

Even though the dataset was small  (N = 67),  out of  the 17 people who got vitiligo only two of them had a progressive decease. But the rest were either stable (3), or had partial (9) or complete (3) regression. So if  you get vitiligo it might mean good news, but a larger dataset is needed to show if it is statistically significant.

Prof Luc Thomas of the University Hospital Lyon Sud.

Patients must be prepared to lobby HTA and Reimbursement authorities as they frequently do not listen to Expert opinions, which leads to decisions that are NOT in the interest of Patients - Melanoma Patients are often well-informed ..

Tuesday, 20 October 2015



What is a stakeholder ? 

A group of people with shared interests that are different from other groups

Clearly the most important stakeholders are those who commit their lives : 


Then we have : CARERS and  FAMILIES  

also GOVERNMENTS who bear the costs of healthcare

then we have CLINICIANS and RESEARCHERS who do the work

we have the PHARMACEUTICAL COMPANIES who fund development

we have HEALTH TECHNOLOGY ASSESSORS who decide on the risks/benefits

we have THE PUBLIC


This is an Excellent Summary of melanoma from an article in Nature :  : Nature Article

Monday, 5 October 2015

Welcome to all !

Please publish here anything from the EADO Conference or Workshop that you think other European Melanoma Patients might find useful !