I N S I D E T H I S

I S S U E :

Agenda: 13th PanCare

meeting in Wroclaw

2

3

European collaboration

of survivor groups/

networks within

ICCCPO

4

5

With Bone Marrow to

the summit of

Kilimanjaro

6

Dear Friends,

We had another successful and well-attended meeting in May in Wroclaw.

We thank our hosts, Bernarda Kazanowska, Maryna Krawczuk-Rybak and Anna Panasiuk for

the hospitality and for arranging a great meeting.

Now that summer is coming to an end we look forward to the 14th PanCare meeting in Lu-

cerne, hosted by Gisela Michel and her team. Before that there are several interesting and

important events as you can see below under “Meetings”.

I wish you all a good and productive autumn and hope to see you soon in Lucerne!

On behalf of the entire board, Lars Hjorth, Chairperson.

NEXT PANCARE MEETING

14th meeting in Lucerne, Switzerland, hosted by Gisela Michel and co-workers.

The meeting will be from noon October 8th to noon October 10th, 2014.

G R E E T I N G S F R O M T H E P A N C A R E B O A R D

PanCare Newsletter

Volume 6

Issue 1

No. 12

July, 2014

Editor:

Julie Byrne, Ireland

jbyrne@boyneresearch.ie

Guest Editor:

Els Vandecruys, Belgium

elsvandecruys@ugent.be

Editorial Board:

Tomas Kepak,

Czech Republic

Alexandra Brownsdon, UK

Herwig Lackner, Austria

Zsuzsanna Jakab, Hungary

Thorsten Langer, Germany

Gisela Michel,

Switzerland

www.pancare.eu

July, 2014 Volume 6, Issue 1, No.12

Organization

ESLCCC 2014 : European Symposium on Late Complications after Childhood Cancer in

Edinburgh, Scotland, September 15-16, 2014. www.eslccc.org

SIOPE-ENCCA Conference 2014 : „Joining Efforts for a Brighter Future for Children and

Adolescents with Cancer – The European Roadmap to Horizon 2020‟ in Brussels, Belgium,

September 18-19, 2014.

SIOP 2014 : 46th Annual Congress of the International Society of Paediatric Oncology in

Toronto, Canada, October 22-25, 2014.

M E E T I N G S … M E E T I N G S …

2015 15th PanCare Meeting : in Dublin, Ireland, hosted by Julianne Byrne, Garry Owens

and Patricia McColgan. The meeting will be from noon May 27th to noon May 29th, 2015, preceded by the

PanCareSurFup General Assembly

P A N C A R E N E W S L E T T E R

Page 2 P A N C A R E N E W S L E T T E R

July, 2014 Volume 6, Issue 1, No. 12

Agenda from the 13th PanCare meeting, April 12–14, Wroclaw, Poland,

hosted by Bernarda Kazanowska and Maryna Krawczuk-Rybak

Session 1 : PanCare general matters and EU updates

PanCareSurFup update by Lars Hjorth

PanCare LIFE update by Peter Kaatsch

ENCCA WP13 update by Riccardo Haupt

PanCare website and newsletter by Tomas Kepak, Ales Luks and Gisela Michel

Horizon 2020 and ExPO-r-Net by Lars Hjorth and Riccardo Haupt

Session 2 : Presentations from Poland

Organisation and difficulties in health care of CCS in Poland by Maryna Krawczuk-Rybak

Health status of CCS in Poland by Anna Panasiuk

General health of childhood brain tumor survivors in Poland by Bozenna Dembowska-Baginska

Organisation of psychosocial care after childhood and adolescent cancer in Poland by Marzena Samarda-

kiewicz

Survivors are part of our world by Elzbieta Pomaska

Session 3 : Invited abstracts and Bialystok presentations

Access to information and health management. A study on how young Romanian cancer survivors per-

ceive their own healing journey and future perspectives by Katie Rizvi

Polymorphisms as predictors of late onset long-term cognitive and behavioural disability: a project pro-

posal by Johanna Blom

Meningeomas occurring during long-term survival after treatment for childhood cancer by Elaine Sugden

Educational and vocational achievement after childhood cancer in France: a rather positive impact by

Agnes Dumas

Educational trajectories after childhood cancer by Agnes Dumas

The use of a graphic library in multisource modelling for out-of-field head scatter assessment by Jérémi

Bezin

Bone morbidity after anticancer treatment by Katarzyna Muszynska-Roslan

Cardiopulmonary endurance, body composition and physical activity in Polish CCS by Malgorzata

Sawicka-Zukowska

„The French delegation‟

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July, 2014 Volume 6, Issue 1, No. 12

Agenda from the 13th PanCare meeting, May 12–14, Wroclaw, Poland,

hosted by Bernarda Kazanowska and Maryna Krawczuk-Rybak

Session 4 : Survivors and Parents‟ issues

European collaboration of survivors (networks) within ICCSN/ICCCPO by Sabine Karner

Organising an Irish parents‟ group by Garry Owens and Patricia McColgan

Julianne Byrne Mrs and Mr. Owens Patricia McColgan

Survivorship Passport by Riccardo Haupt and Vera Morsellino

Session 5 : PanCare General Assembly

PanCare Constitution and By-laws

PanCare Membership issues and Board meetings

PanCare Charity status and Treasurer report

PanCare article

ENTYAC and European Retinoblastoma Cooperative Group

Session 6 : PanCareSurFup WP4 studies and Wroclw presentations

Late effects and quality of life after haematological stem cell transplantation by Ewa Gorczynska

With bone marrow to the summit of Kilimanjaro by Alicja Chybicka and Krzystof Kalwak

The incidence of bone cancers in PanCareSurFup by Miranda Fidler

The incidence of genitourinary carcinomas in PanCareSurFup by Joyeeta Guha

The incidence of digestive carcinomas in PanCareSurFup by Jeff Wong

The incidence of soft tissue sarcomas in PanCareSurFup by Chloe Bright

Session 7 : PanCareSurFup WP6 and WP7

Final event planning by Julianne Byrne

Overview WP6 by Rod Skinner

Transition update by Eva Frey

Female gonadotoxicity update by Ricardo Haupt

Male gonadotoxicity update by Rod Skinner

Implementation and feasibility subgroup by Rod Skinner

Methodology subgroup and summing up by Rod Skinner

Session 8 : Other business

„PLAIN - Producing Recommendations in Plain Language

Intended for parents and survivors‟, a WP6&7 subgroup in

PanCareSurFup by Julianne Byrne

Leisure working group in PanCare by Gill Levitt

Next meeting by Gisela Michel

Farewell and close of the meeting by Bernarda

Kazanowska, Maryna Krawczuk-Rybak and Lars Hjorth Maryna Krawczuk-Rybak Bernarda Kazanowska

Page 4 P A N C A R E N E W S L E T T E R

July, 2014 Volume 6, Issue 1, No. 12

European collaboration of survivor groups/networks within ICCCPO

by Sabine Karner and Aimilia Tsirou (ICCSN representatives)

Since 2001, the International Childhood Cancer Survivors Network (ICCSN) has its own session during the annual

SIOP congress. From the beginning, ICCCPO provided survivor representatives the opportunity to get together in

order to share resources and experiences. This is a unique possibility for survivors/survivor representatives to en-

courage the implementation and development process of national and local survivor groups as it becomes increas-

ingly important to set up a survivors‟ group and offer survivors in the different countries or regions specific activi-

ties.

Strengthen the survivor groups collaboration within Europe

Beside the international collaboration, one aim of ICCSN is to strengthen the continental survivors

network, especially in Europe a lot of activities are going on especially for survivors (on the local and national

level, embedded in EU funded projects, ICCCPO-Europe meetings etc.). The advantages of

an intensified European collaboration are: shorter distances between countries (less travelling), cultural affinity,

possibilities to use the existing facilities of ICCCPO-Europe meetings and at the same time having the collabora-

tion with professional networks like PanCare and SIOPE.

Examples of survivors collaboration in Europe

Here you find a short overview of some survivor groups/networks within Europe:

· 1st Balkan convention

The first Balkan Survivors‟ Convention was held in Belgrade (Serbia) from 14 - 18th of August 2013. Three na-

tional parent organizations (Zvoncica, Cika Boca and Uvek sa decom) made this possible. Fifty survivors, age 16-

30 years, from six countries attended this unforgettable meeting. The motto of the convention was "I want to

know", where presentations were held by doctors, actors, nutritionists, fitness trainers and healthy lifestyle trainers.

During the convention the survivors found a translation for the term 'survivor', and made it the official name in the

Balkans: „MladiCe‟. It is hard to explain, but it means something new, young; and when you split the word: 'mladi'

means young, and the 'C' stands for cancer. The 2nd Survivors‟ convention will be held from 20-24th of August

2014 in Belgrade. More information about the Balkan convention here.

http://icccpo.org/index.cfm?fuseaction=entry&entry=336&category=125&subcategory=128

· Valencia meeting

„Together we are strong‟ was the motto of the fifth ICCCPO meeting of European member groups, which took

place in Valencia (Spain) from 17th – 18th of May 2014. Around 100 people attended the meeting, among which

were approximately 30 survivors from 11 countries. For the first time a special survivors‟ session was scheduled

during an ICCCPO-Europe meeting.

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July, 2014 Volume 6, Issue 1, No. 12

Valencia meeting

Sabine Karner and Aimilia Tsirou gave a summary of the different European and other international activities of

the past year and showed the current communication tools of ICCSN-Europe. This was followed by presentations

from national survivor groups, such as Austria, Bosnia & Hercegovina, Greece, Germany, Croatia, Serbia, Roma-

nia, Spain, Sweden, The Netherlands and Switzerland.

Establishing survivor groups and intensifying the network of survivors are among the most important aims of

ICCSN-Europe; and it was wonderful to see how many activities by and for survivors are going on in those coun-

tries. Here you find a report.

http://icccpo.org/index.cfm?fuseaction=entry&entry=376&category=2&subcategory=6

ICCSN Europe facebook group

Since the beginning of the year the European network of ICCSN has set up a secret Facebook group, by which

ICCSN would like to intensify the communication between survivors from different European countries.

Are you a survivor from any European country and would like to join the group?

Are you a representative of a survivors group/network/organization?

If you would like to join the ICCSN Facebook group, please send an e-mail to:

s.karner@kinderkrebshilfe.at or jaap.denhartogh@vokk.nl so that we can invite you to the group!

If you are currently working to establish a survivors group and you are a psychologist, doctor, or nurse

etc., please contact us. We would discuss possibilities to join the group!

The past experience of survivors meetings showed that there are many common interests among survivors and the

countries they live in. It really makes sense to intensify the collaboration. Therefore the European network of

ICCSN would encourage you to spread the word about survivors‟ activities to make more survivors interested to

collaborate and help us to make all these activities visible.

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July, 2014 Volume 6, Issue 1, No. 12

With Bone Marrow to the summit of Kilimanjaro

Alicia Chybicka and Krzysztof Kalwak

Department of Bone Marrow Transplantation, Pediatric Hematology and Oncology,

Wroclaw Medical University, Wroclaw, Poland

The aim of the trek

to raise the public profile of transplantation and to demon-

strate that transplanted patients can lead an active life.

The participants

A team of six BMT recipients and six bone marrow donors

supported by a medical team including four experienced

haematologists and a very experienced tour leader,

the famous Polish adventurer Tomasz Kobielski.

The six BMT recipients

All BMT recipients were off immune suppression except

one who was just at the beginning of second line chronic

graft versus host disease (cGVHD) therapy consisting of

extracorporeal photopheresis (ECP).

Apart from severe extensive cGVHD in one patient, other

patients suffered from less severe comorbidities including

mild obesity and hypertension.

Results

21 of the 24 participants reached the summit of

Kilimanjaro at 5895m.

3 of the 6 BMT recipients reached the summit.

The 3 remaining BMT recipients reached altitudes between

4650 and 5300m.

Reasons why 3 BMT recipients didn’t reach the summit

Severe diarrhoea/exhaustion at 5300m in one and

exhaustion at 4650m at Barafu Camp in two.

Conclusions

It is possible to provide safe ascent conditions to high

altitudes for transplant recipients.

The key factors include pre-departure preparation and

training, experienced supporting staff and frequent AMS

symptom monitoring.

The trek raised the public awareness of transplantation and

markedly increased the numbers of bone marrow donors.

Even severe chronic medical conditions should not ex-

clude climbers from fulfilling their dreams.