Merkel Cell Carcinoma

Very few people have heard of it, seemingly also the hospital cancer unit. I presume this was why I was immediately contacted by the local hospice. I was initially offered a chemo/radiation regime, which I refused. It was only due to my own research that I stumbled across Immunotherapy. My main resource being an International MCC forum. Even then I was left to make my own decision as to which of the two 'cocktails' to opt for - flip of a coin! After 6 treatments it has proved, much to everyone's surprise, remarkably effective. I am told I am only one of three recipients receiving this treatment, albeit the only one with MCC. Thus far, I have had no significant side-effects, which would certainly not have been the case with chemo/radiation! Needless to say, I will continue on this treatment. I shall look into CAR-T therapy as I have Proton Beam. God knows no one else will!   

Dera

it’s good to hear you have been so proactive in searching for something that might extend your life and that it hasn’t resulted in any significant side effects. As someone with a rare disease, one person per one million of the population, which has no bespoke treatment,  I have always done my own research so that I can have a intelligent conversation with my consultant about my options. As long as you get the balance right between quality of life and the treatment there is no reason why you shouldn’t explore all your options because as you say no one else will !! It’s a dilemma anyone with a very rare illness faces and you can’t afford to be passive.