ASCO 2016 Day2

04/06/2016

Day 2 started for me with a trip to the Pharmaceutical Stands and a chance to meet some of the industry representatives. The size and scale of these stands are mind boggling. It is intimidating as a patient to approach these industry representatives but I have to say the experience was on the whole a positive one. They were very happy to meet with patient advocates, I did feel some of the answers were a bit vague like when I went looking for information on why particular trials are not available in Ireland. It is important though to make yourself known and who you represent so they know someone is representing patient interest in your country.

 

After lunch was the melanoma poster sessions where new abstracts and trial results are posted and you possibly get a chance to talk to those who are running the trial it is very busy and can be hard to find space to even see the poster. I had an interesting chat with a Australian clinician who was presenting results from a dabrafenib/Trametnib adjuvant trial for stage 3 patients pre and post surgery she told me she had a young Irish patient who is in treatment, but has decided to stay in Australia purely for the best treatment options, they have no family in Australia and are very fearful of something disastrous happening but feel they have no choice because of treatment options that are available in Ireland for melanoma, it is a very sad situation to find yourself at opposite side of world from supporting family when you are in a life threatening situation. It is a failure in duty of care when patients are forced to make such difficult quality of life decisions, being separated from your family definitely affects your quality of life and it has been proven patients with good support network do better in treatment outcomes.

I spoke to more abstract presenters about genetic screening results and they were surprised at our lack of facilities and personnel it is common practice to screen here for germ line mutations and tumour mutations. Also when I explained about our shortcomings at sufficient numbers of dermatologists and the problems at St Vincent’s hospital accepting new melanoma patients and our also survey on waiting times I was told many times this is not acceptable for patients. image

I happened to bump into Paul Nathan my former Oncologist from when I was originally treated in London it was a good opportunity to pick his brain so to speak as he is one of the top guys in the field of melanoma in the UK. He was slightly surprised to meet me in Chicago and very disappointed to hear I had disease progression he was very kind to me when I was initially diagnosed and bore the brunt of my near nervous breakdown at the time. He asked after my son who was an infant at the time and used to accompany me to my appointments in his stroller, it seems so long ago now but here I am still dealing with this bugger of a cancer and yes I do know how lucky I have been, to still be alive, so it was lovely to be able to thank him for his help at that time which kept it at bay for just over 10 years. He suggested I attend results of 3 year treatment outcomes for patients on targeted combo this Monday, I am hopeful to one day also be part of that group that have long progression free overall survival rate.

On a positive note their was a poster presentation on the impact of obesity, on outcomes of patients, treated with dabrafenib/trametnib by MD Anderson Cancer Centre and surprisingly in a reversal of the normal outcomes for obesity in cancer patients it was proven that it actually gave improved outcomes so no Cabbage Soup or Ketogenic diets for me 😊

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Afterward in one of the large conference centres their was a Abstract Poster session discussion where some of these topics were discussed in more detail I will post more on these in the coming days.

On the way back to our apartment me and the other Melanoma Patient Network Europe advocates have robust discussion about the days events, so much talking we almost forgot to have dinner until very late. Tonight we ended up at a French restaurant, food was lovely but my Dutch companion ordered an Irish Coffee and it arrived in a mug topped with squirty cream from a can I told him it was an insult to the entire Irish nation, add to that a hilarious chat about the Eurovision Song Contest on the way home and some difficult explanation about Dustin the Turkey to French, English and Dutch representatives and you realise it’s so much more than just gained knowledge at conferences and advocacy get togethers, it is the support network, laughter and friendships which are just as important when dealing with this disease…….