ASCO 2016 Day 1

3/6/2016
Asco is enormous!! The conference centre itself is on the scale of an international airport so a lot of walking unless you hire a scooter to get around. We started the morning off with registration and meeting the other MPNE advocates. The first session we attended was on the multidisciplinary management of brain metastasis. These meetings are very large affairs with scientifically based information directed at medical professionals and industry stakeholders there are relatively few patient advocates attending, but this is exactly the reason it is so important for patients to become involved and educated so they have their input heard.

This whole industry is only in operation because there are cancer patients that need treatment so we need to remember who is the most important stakeholder find our voice and influence change in treatment process, where we as patients feel improvement is needed. The basis of this meeting was to share new findings on the treatment of brain mets the presentations main findings were based on the effectiveness of whole brain radiotherapy and its effects on quality of life, there has been a shift toward sterostatic radiotherapy as an alternative and this is now the preferred method of treatment depending on tumour load., as the effects on quality of life for patients is more tolerable.

We popped in to the patient advocacy lounge to meet the patient liaison staff, they have provided a very good facility for advocates to meet and network. In the afternoon myself and Koen from Dutch Melanoma group attended a presentation in one of the incredibly large main conference halls these lectures can accommodate a few thousand people. There is a large stage with screens so everyone can see clearly as there are so many attendees. Each person who has been accepted to present gets a specified amount of time. The topic of this extended education session was Genetic and Genomic Testing in Oncology care. This session covered sequencing in relation to many types of cancers so not specifically Melanoma but it was enlightening and also disappointing to see how far advanced the use of this information is in patient treatment plans in USA as opposed to Europe in general. In fact Professor John Crown has recently stated in the media the need for a properly funded Genetic Testing Centre in Ireland. At present the tests are preformed at the national children’s hospital in Crumlin which is undersourced and unsuitable this I have first hand knowledge of having been through the system.

The US screening programs take many factors into consideration not just screening for familial cancers but also evidence of germ line mutations such as higher risk of cardiomyopathy which may effect which drug combination is most suitable for the patient. It may also pick up other related or unrelated mutations from whole family testing an example was given of a young woman age 32 diagnosed with stage 4 lung cancer 8 weeks after giving birth because of genome testing the most suitable treatment options were selected and she responded well also her family agreed to testing and a very early breast cancer stage 1 was picked up in her sister who was successfully treated. This type of testing is of course funded by health insurance reimbursement in the USA so it is easier for a patient to access such specialist treatment. It is of benefit to all stakeholders as drugs are so expensive it can give a pretreatment knowledge of what is most suitable in terms of acceptable toxicity and benefit of drug while also providing best value for health providers.

It can be summed up as the more you test, the more you find, the more treatment options. A substantial amount of people will have inherited these gene variants so to test in an opt in system for patients makes ethical and financial sense.

I also got the opportunity to ask a question on familial melanoma testing once I blocked out my nerves
I also got the opportunity to ask a question on familial melanoma testing once I blocked out my nerves
Later in the evening we attended the Merk patient advocacy reception which was followed by a patient centred presentation and discussion panel it highlighted many of the issues patients face following a cancer diagnosis and also discussed new treatment options for various cancersimage