Sunday sessions

Kari Anne Fevang, melanoma patient 
Experience from public blogging to public appearance 

Her melanoma  story

''Mole, melanoma stage 1B, September 12, excision

Found a tumour under my skin, 15 cm from org. mole, May 14, excision June 14, and sept 14

Dec 14, first control CT, progression to liver, lymph nodes and soft tissue. 

Dec.14.- Stage IV   

Jan 15,  several lung metastasis.

Feb 15, enrolled in  phase 1/ 2 study with ipilimumab and UV1 vaccine

June 15, stopped study due to anaphylactic chock, partial remission

June 16, stable disease..''

In Jan 2015

''Started a secret group on Facebook

Texting and calling closest friends and family took too much energy

Everyone got same info

Enjoy being with other people without using time to update them

Never blogged or wrote anything before

A lot was about me, myself and I..''

Why go public /Why do patient advocacy?

''Passion

Pay it forward attitude

Satisfying to learn that people have acted on my advise to check moles

Patient advocacy take away focus from me, myself and I

Deep down selfish wish to be prepared if progression''

Thanks to Kari Anne to share with us her story 

Alberto Piras
Use the internet to build tailored health interventions

-use a magic potions for children
-use of sounds

Gamification of health care, e.g. Super Power , ReMission Video Game -for cancer patients , (children during administration of treatment)

• gamification is at the beginning of the development 
• it works with children and young adults
• with old adults/not so used to play games-not successful
• can be used both in treatment but also in prevention
• presently SuperPower games are used only within treatments of cancer children, second phase is prepared to convince children to follow the treatment;
• focus, motivation, creativity, competitive

Bettina Ryll
Antonella Romanini

Best of Melanoma - ASCO2016

-response to pembro is as durable as the one in ipi

- no difference in schedule (2 or 3 weeks)

-safety profile better for pembro than ipi (obviously)

-OS at 3 years is 45% for naive patients (keynote 001)

-uveal excluded-

-different subgroups -no big difference in effcacy at different doses 

-first line treatment

-pts stopping pembro after complete response: 89 % stay in CR (complete response)

 pembro + ipi 

- toxicity similar  with Opdivo plus Ipi

-response independent of PDL1 status- 

- also PDL1-negative patients respond

- 153 patients (is a Phase1 expansion cohort)

- high overall survival at 6 months- 93%; 87% patients received this first-line 

Keynote 029- doses 1 mg ipi and 2 mg pembro/kg, well tolerated, no treatment related deaths

ORR 57%

OS 93% 

98% of patients remain in response

Longer follow up is needed

Updated of Checkmate 067, Ipi +nivo vs ipi vs nivo

Update  on Combi D (dabrafenib +trametinib vs dabrafenib)
D+T > D mono
patients with high mutational load and LDH normal -respond better!
median OS: 25 months vs 19 months
60% OS combi D+T at 3 years
ORR 69 combinvs 53% dabra alone
crossover allowed
patients with high LDH respond as well

MEK inhibitor (binimetinib) -for NRAS patients 

• groups that received prior immuno responded better than the ones did not;
• not spectacular data, but there is some benefit: ORR 16% ; median duration of the response 11,1 months

How to treat patients with Braf positive
Ribas - immuno first options - use your own T cells and train them to fight cancer-long lasting response to PD1 blocade
Flaherty - Combi Braf+Mek first, because median OS normal 17 months; for patients with elevated LDH, PFS is only 5 months


''Take home messages'' by Bettina Ryll

- PD1 works better than Ipi (OS, PFS, side effects)

- Tumours expressing PDL1 respond better to PD1 than tumours without PDL1 expression

however, tumours without PDL1, still respond to PD1!

- PD1 plus IPI works better than PD1 (OS, PFS) but comes with severe side effects. 

- PDL1 expression of the tumour does not seem to play a role. 

- Patients with high PDL1 seem to do equally well on Nivo and Nivo plus Ipi in terms of PFS but not as ORR 

- BRAF plus MEK inhibitor better than BRAF (let alone) inhibitor, very durable results for subgroups of patients- equal if not superior to PD1

- NRAS mutant patients with prior immune therapy derive some benefit from MEK inhibitor

- We might have to re-think the ‘targeted therapy first’ strategy for patients with fast-growing BRAF positive tumours

- The combination of Dabrafenib + Trametinib + anti-PD1 is something to watch out for!

OS- Overall Survival 

ORR-Objective Response Rate

PFS- Progression Free Survival

Afternoon sessions

How to communicate bad news
Claudio Gentili

Communication is  interactive change of two or more  participants
- verbal and non verbal

What we need to communicate:

• we need a message
• channel
• transmitter
• receiver

Some function of communications
- expressive function
- phatic function (checking if the message is understood)
- meta linguistic (meaning of communication)
- artistic function

Relevant in clinical settings:
relational function (establish cooperation toward commune scopes) -can be verbal or non verbal!
silence is a way (powerful tool) to communicate
Axiom: there is impossible to NOT communicate in the presence of an other person

A bad communication example: Speaker 1 is presenting a topic, speaker 2 want to change the topic, speaker one return to his topic etc.

V axiom- the way you communicate is related to the interlocutor (doctor -patient= some superiority position!! the one who posses the knowledge has the power). Now- obvious here is the power of knowledge that is playing an important role in bringing the communication on equal basis.

Appearance
Spatial behaviour

Communication styles:
aggressive, passive, assertive

Patient and doctor are usually not synchronise in felling the stress when receiving the bad news (see the figure).

Patient coping reactions -grief phases-denial phase, anger toward medical doctor, barging, guilt, depression, acceptance -normal reactions; the solution seen by the speaker: doctor has to give the time to the patient to process the bad news.


Rob White presentation
Knowledge management

Why do we need knowledge management
Example -landing a airplane:  focus on the problem and the checklist

First we have DATA, then the INFORMATION which will be structured in KNOWLEDGE and finally will be COMMUNICATED!
Why is this important for MPNE?
We are knowledge based organisation -we share or disseminate the knowledge pushing the knowledge across national organisations and patients groups.
For this we need an efficient NETWORK.

Some challenges:

• Subject information-where is the info available, 
• The need for translation 
• Key persons with knowledge are the volunteers (they can give up any moment the activity or be lost due melanoma-and knowledge is lost)
• Create human capital
• Duplicate knowledge
• Control of how the knowledge flows in the organisation

Some techniques

• Story telling socialisation
• Creation of meaning
• Socialisation
• Externalisation (slack, trello, different links)

To be continued (from Rob's presentation)

............................................................

The interaction between man and machine-challenge and limits
Nicoleta Calzolari

Computational linguistic
Human language is complex -many dimensions political, social, culture, economical
Computers are able to recognise positive feeling/negative opinions -social listening
Technologies are important for the purposes -because you can do something with; they are ''enabling'' technologies.

Have to offer access but in the same time to preserve the cultural identity
Design &development process large amount of data
The difference between research and commercial systems
(to be continued)

Improving medical communications with languages technologies, by Giulia Venturi


Health literacy is related of human ability to read/understand medical documents but

• is related to empowerment of citizens 

Survey to assess the level of literacy in health in adults (16-75 years old) showed different level of health literacy in Europe.

Language technology-bridge between docs/text and knowledge
Tools able to recognise the level of difficulty of a give text for the general population -readability index of a text.
These tools have many applications:
human oriented,
machine -oriented (checking the translations)
educational scenarios (students, citizens, patients..)
Use in medical communication: PubMed

Morning sessions

Antonella Romanini
Overview of the challenges in melanoma

Some ideas
Early diagnosis -lead time bias

cancer discovered with screening -you discover
- just 80% of the survivors
- 50% of the survivors
-is very difficult to give percentages when you take a picture in some point.

Why is important to catch early melanoma
e.g. 360 000 people were screened in Germany- (2003-2004), melanoma discovered early is curable.


Nevio Dubbini
Communication in Primary and secondary prevention

Aims
Target audiences  -example: students
checking the efficacy of prevention campaign by performing post campaigns surveys

Smart technology;
-downloaded by 2000 people
-targeting audiences you reach young adults

Secondary prevention
-measure how effective is the prevention
-involve MDs if some patients need treatment -to facilitate the track from the screening to the first visits

Recruiting people
-permanently
-campaigns
 Regular screening lower selection (RS)
Very important to work in small communities

Campaigns: scalp (performed with hair dressers)
measure the outcome and improve methods
a toll for communication
Perspectives: develop a risk calculator for health professionals

 The app Happy Sun , by dr. physicist Emilio Simione

To raise UV light awareness
To change the behaviour of people related to the sun!

Some characteristics:

• fluctuation during season
• use real time images from satellites
• UV -intensity
• UV sunbathing decisions
• sources of radiation everywhere (clouds, sand, umbrella filters 50%)
• no need for calibration sensors
• exposures related to different sun creams 
• has scientific validation (university of Naples, ACM, Italian Ministry of Health)

Italians go very often in between 10-14.00 o clock to sunbathing

Can be downloaded for free almost everywhere in Europe! 

www.happysun.co.uk

Vitamin D - the message is NOT to totally avoid the sun exposure
Indoor activities during the year  -exposure to sun is mainly occasional and intensive, so there is a need for balancing the exposure to sun and indoor activities
HappySun App is connected to the pharmacies -if the pharmacy find high risk nevi or other signals they announce dermatologists.

Conclusions
Solar radiation can be controlled
Satellites and support technology

Is useful for public health education, life style vs skin skin data acquisition and correlation analysis
Improvements or extentions:
- mother
- children use
- the app is in English and Italian
- translation in other languages  -Dutch, East Europeans etc

Antonella Romaniani (part II)
Diagnosis of melanoma  

How risky is a melanoma lesion
Need high expertise
good tools (dermatoscope)

Role of pathologist is crucial-diagnosis is done by pathologist
Mitoses
Melanoma of 4 mm is much worst as prognosis than the one present in limphnodes.
Surgeon does usually the measurement of the primary lesion- not always a corect evaluation, so a second excision is acccepted by guideline

SLNB-sentinel limphnode biopsy -is for staging purposes , but NOT a treatment

• is important for the subsequent treatment especially now with the new treatments in adjuvant setting;
• high level of  errors: finding negative limphnodes
• are the protocols respected?
• there is a high false negative rate!

PCR- detecting tyrosinaze -50% false drops to 4%!!!
(Tyrosinase is an enzyme for controlling the production of melanin). 

Having adenectomy immediately after SNLB or later -do not make difference in OS (overall survival)

Recommending adenectomy
non sentinel lymph-nodes - some risk factors (satellitos, micrometastasis > 2 mm, etc)


Treatment of stage III -meta-analysis -interferon, peg intereferon; speaker pleading for their use when no other terapies available.

- ipilimumab in adjuvant seting; (why not also pembro and nivo; clinical trials are going on with nivo and pembro in adjuvant setting)






Treatments for metastatic melanoma (the known ones- more to come Sunday, 12th June:
News from ASCO2016)

Word, emotions and communication in the brain
Pietro Pietrini-Lucca

-humans: prefrontal lob development
-what is making us different:

-not using tools and instruments (is not characteristic only to humans)
-not simply the use language to communicate- we are not the only ones ( animals communicate too)

What is making us unique is:
-ability of imagining the future
-ability to ask why 
-we are able to forecast our actions
-words are transferred in pictures in our mind (ekphrasis)

Tools to investigate -MRI (Resonance Magnetic Imaging )

Emotions and words are closely related
Emotions induce images
Images induce emotions

e.g. Divina comedia - words can re-build not only past stories but even the emotions around that old story
Scaling behavioural and brain functional data
Using behavioural data- is predetermined

Is depression a question of life of death (changes in hypocampus)?
Questions:
- can you train the brain to not react with panic/fear in front of bad news
- good references for the role of depression in dealing with the disease
-  drugs or meditation as antidepresants in cancer?
Psychotherapy works but drugs are working better (speaker opinion)
Psychological assistance -the way to respond to the events of the life (part of support in cancer)
Aesthetic aspects - characteristic to humans

''Depression is not a choice!''