One of the things that I have always been aware of since diagnosis is my lack of scientific knowledge. It seems ludicrous in so many ways that as a patient I would be worried about this sort of thing….and yet there is logic behind this fear.
Melanoma drugs cost huge amounts of money and the options, whilst improving, remain limited. Therefore treatments are more often than not accessed via clinical trials.
Clinical trial scientific papers are complex in their language…..make that foreign. Each individual word (aside from the abbreviations and cryptic symbols scattered around) is English, but put the words together and they become challenging documents to digest.
My link to Melanoma Patient Network Europe gave me the opportunity once again to return to Krussenburg near Stockholm for a training workshop….teaching us mere mortals how to read & understand a scientific paper.
Armed with tea, post it notes & a box of Ibruprofen for when my head exploded we were guided through the published paper of a recent Clinical trial headed by Dr James Larkin of The Royal Marsden. “Combined Nivolumab and Ipilimumab or Monotherapy in Untreated Melanona”
The guidance came from Professor John Haanen who is one of the leading oncologists in Europe & also contributed towards the paper we were to read. Such is the positive impact that is being made across Europe by the members of MPNE, that someone as busy as he must be, gave up a weekend to join us is a credit to the group.
The point of understanding a scientific paper is two-fold…from the overall goal of educating advocates so that we can educate others….and from my part, purely selfishly, I feel like I should know more, so that when (if) I progress and need the drugs that I can understand the difference between 1 drug & another…and the differences between the clinical trials available to me. Not all clinical trials are designed in the favour of the patient.
It’s brutal – no matter what way we dress up the science behind a clinical trial – the point of them boils down to money.
Clinical trials like the one we studied cost over £50million dollars to run worldwide. The potential income for Pharma from the drugs on trial runs into $billions.
The clinical trial we studied was “double blind”…what this basically means is that in theory, neither the oncologists or patients knew what drug they were getting. There were 3 arms to the trial – 3 different drug / drug combinations that the patient could have been given.
Trials like this are blind for only 1 reason…..so that the patient who is on the lesser drug doesn’t discover they are on that drug & drop off the trial.
Really, the way social media operates these days, most trials stop being blind very quickly –patients talk online, share symptoms (many of which they know are common side effects from particular drugs) and before you know it they suspect what arm of the trial they are on. Potentially, before their oncologist knows.
But they still want confirmation…the certainty…what drug was it that I received…the trial early results are published…”surely I can know now”. But no….oncologists can only disclose to patient what Drug they had when a/. the patients disease progresses meaning the need access to another drug……or b/. when the required pre-defined number of events occur to make a clear comparison between the drug options.
What’s an “event” I hear you ask…..a party, a celebration, 2 years of no progression….something good surely….NOPE….an event is the pretty & scientific way of saying death. And it is quite sad & ridiculous that a clinical trial has the requirement for death…many deaths…in order to be deemed conclusive.
Are not enough Melanoma patients dying already?!?!
Other than my obvious frustration with the wording of a scientific paper I felt the weekend was a success. We learnt not just how to read the paper, but to understand the writing, and understand what wasn’t written. We were shown how to translate the obble-de-gobble-de-goop into layman’s terms.
More importantly we laughed.
Melanoma sucks. Melanoma is brutal & cruel, and whilst huge advances are being made, it remains life changing. In November alone I know of 9 people (some very close to me) that have lost their fight to the monster.
The MPNE network was created in order to help patient advocates in each different country connect together…to share our stories, our battles and our achievements in improving Melanoma awareness and treatment care in our own countries. We meet, we learn, we talk and we aim to make a difference – no matter how big or small.
I go to these events because I desperately want to make sure that I am armed with everything that I need in order to survive this….but also so that I can share that information with others…with you…through this blog and other avenues…so that we can then unite and change all of the elements of our care that are not working.
Going to training events & conferences takes me away from my family….but I get so much more out of these weekends than just the power of knowledge.
I have friends. Melanoma friends….and I can’t wait to see them again at the next conference…for more of the same…brain fuel, tummy fuel & happy fuel!