Welcome back to hotel Melanoma, the place no one chooses to visit and nobody wants to stay, I in particular am one of those. As far as I'm concerned this disease has already had enough of my time and this so I made a decision to give it one more heave-ho!
I am due to start screening for a clinical trial in Bristol, starting in the next few days. I've just put down the 10 page protocol for some time to reflect and weigh things up a little.
So realistically what do I have to loose? Well actually turns out it could be a few things, my hair being one of them, but it is recommended by both my surgeon and oncologist I do this trial to endure disease-free survival, sounds full-on I know.
So what is the trial? It's a year long chemotherapy based treatment program to test a new drug in its final stages of development before it is sold as a medically recognised drug treatment for melanoma patients who have had a Melanoma tumor surgically removed, and at present shows no signs of disease. To participate on the trial you are required to have a specific form of genetic mutation (not the ninja turtle kind) within something called the BRAF gene, this is where the gene has basically become faulty, it sends messages to growing melanoma cells telling them to divide and multiply quickly as a fast spreading melanoma. Around 50% of people diagnosed with melanoma have the faulty BRAF gene mutation and by my understanding it's best understood as a corrupt leader commanding bad messages to cells throughout the body, causing more and more cells to go bad. Essentially the drug I will take stops this communication from happening, therefore preventing the growth of new melanoma within the body and causing any undectable traces to die. You can read more about the BRAF gene here.
Sounds positive, but as always there's a catch...
The trial is called a double-blind trial, this means that you are randomly selected to receive either the drug, or a placebo. The placebo is a sugar pill, with no medical benefit and you are not told which you will recieve. You undertake the same treatment plan and responsibility to participate regardless of whether you are or aren't on the drug, and you will only be unblinded from the trial if medical complications or reoccurrence should happen. I am told there are side effects, but not everyone gets them, 4 in 10 people experience anything up to 10 side effects, which may hint that you are recieving the drug, but otherwise it's a guessing game, one that allows clinical research doctors to obtain vital information regarding the success of the drug in preventing the melanoma from returning. You take the tablets for twelve months, then you are monitored and looked after for a following four years, so that's five years of constant check-ups and medical support; five years to stay melanoma-free.
The second option is to have four weeks of radiotherapy to my armpit, to kill any last evidence of the melanoma that can't be see in scans. Currently my scans appear clear (NED- which stands for now evidence of disease) and by accepting the radiotherapy, I immediately exclude myself from the new clinical trial and potentially a years worth of treatment; you can't do both.
Third option is to simply 'watch and wait' with three month check ups, this is the least promising and an option that only existed before research provided new treaments; needless to say I won't be sitting, watching and waiting for anything to come back.
So as I write is I am weighing up my options and as I read back to myself I have decided...I am going back to Oncology tomorrow morning with the signed protocol to begin the Clinical Trial, it's two weeks to Christmas and if all my tests come back ok then I will begin between Christmas and New Year.