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#COVID19 and cancer

OPEN LETTER  TO ALL CANCER PATIENT ADVOCATES v1.0 Dear colleagues, #COVID19 is ravaging through our societies. We already see how it affects cancer patients.  Here are my thoughts. In the last weeks, we have seen in our Melanoma community that - follow-up appointments and control scans are postponed - patients are switched to treatments that are less effective but have fewer side effects, can be taken orally instead of IV or are completely taken off treatment - clinical trials are closed, leaving patients whom all other therapies have failed out off options - Stage 4 cancer patients are not being given permission to self-isolate at home 'because they had no COVID19 symptoms' - some patients on forums do not recognise the need to self-isolate and feel that 'cancer was already enough to worry about'  - a high level of anxiety and uncertainty - rampant levels of incorrect or unhelpful information  And we have no reason to believe that this would be dif
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Reducing the Impact of Cancer Pain

Unfortunately, pain is a constant companion in cancer and without doubt one of the biggest contributors to the overall suffering from cancer. According to the WHO, 55% of patients undergoing treatment for cancer and 66% of those with metastatic or terminal cancer suffer from pain. Even for those surviving cancer, pain can remain as a constant unwelcome companion and reminder of the past. FROM WHO Guidelines for the pharmacological and radiotherapeutic management of cancer pain in adults and adolescents While we were taught at Medical School that 'with modern medication, no patient should have to suffer pain', anyone in the cancer field knows how far from reality that statement is. Anyone who has ever tried to book an appointment with a pain specialist knows how hard THAT alone can be...so we need better solutions to reduce the suffering from pain. So here now comes the Cancer Pain Trello   - what do we have to do in order to reduce the impact of pain for cancer pat

Life, not just survival Trello

As previously said, I will set up and work on Trellos in the order of the number of people we loose to that specific cancer in Europe, starting with Lung Cancer . But obviously, if you are passionate about a topic, we can start any other board immediately and you get to work. And have a look HERE  what people already have to say on survivorship!!! 

Show me the DATA...trying to get my head around the Cancer problem!

Many of us have a very personal Cancer Experience....but after reading FACTFULNESS I'm seriously suspicious of my own preconceptions, so here I'll try to collect data sources on Cancer. Thank you for adding your favourite resources! ECIS- The European Cancer Information System ' ECIS   provides the latest information on indicators that quantify cancer burden across Europe. It permits the exploration of geographical patterns and temporal trends of incidence, mortality and survival data across Europe for the major cancer entities. The purpose of the web application is to  support research  as well as public-health decision-making in the field of cancer and to serve as a point of reference and information for  European citizens .' Really useful to have a tool like that actually- and it's easy to export figures, too. So- first question:  How many Europeans die of cancer? But then...where does this data come from? Looks like Cancer Registries will

Lung Cancer Trello

My dear colleagues, as promised- the Lung Cancer Trello is live  and waiting for your input on how we can reduce the impact of Lung Cancer! Lung cancer is the cancer that kills most people worldwide and also in Europe. A very sobering read from the IARC (International Agency for Research on Cancer) on Lung Cancer... http://gco.iarc.fr/today/data/pdf/fact-sheets/cancers/cancer-fact-sheets-11.pdf

The cancer pensieve

So, thinking about cancer or rather- how to get rid off it- it will take us 1 - prevent whatever we can prevent 2 - detect as early as possible for a chance of a cure and minimally invasive treatment 3 - treat effectively what we could not detect 4 - and ensure that people living with and survivor actually have a life, not just mere survival Every cancer will have their own set of challenges.....which means we need a lot of insights. Right now, I would give a lot to have  Dumbledore's pensieve - and your thoughts in pretty bottles. https://harrypotter.fandom.com/wiki/Pensieve As that's unlikely to happen however, it'll be trellos for the time being. My Melanoma colleagues were so kind to help me test google slides- usually awesome but for this purpose, not very attractive as you can see here .... So now it's trellos and the template looks like this: https://trello.com/b/if3Bs3Te/to-reduce-the-impact-template And this is how it works:  1. Eve

OUR Cancer Mission

Two weeks ago, I accepted to join the Horizon Europe Mission Board for Cancer. The Mission Boards- there are 5 of them, each one addressing a different and important challenge for our society- are a new approach  chosen by the European Commission to address 2 important criticisms on the former Horizon program: 1. Unclear impact 2. Citizen don't understand the value of research and innovation Missions are supposed to be larger than a mere funding program- they are there to solve a problem of our European society. My point is- if you look at the list of mission topics, the only possible conclusion is 1. they ALL matter and 2. they are interlinked. Adaptation to climate change including societal transformation; Cancer; Healthy oceans, seas, coastal and inland waters; Climate-neutral and smart cities; Soil health and food. However and it's no secret what drives me personally. Cancer- Melanoma to be precisely- killed my husband in less than a year, a few days aft