It began with a pea size lump. On my chest, nearly under my arm, just prior to Christmas, 2012. My GP said I probably shouldn't worry too much and that it could wait till after our overseas trip to remove it for biopsy. But how could we go away with that on our minds? So my wife and I decided to get the jolly thing removed post haste and find out what was what. As it happened, the GP found removing the lump more difficult than he expected, and the biopsy came back as melanoma. And so began my journey in earnest.
In February, all my lymph nodes were removed on my right side. When this operation had healed, scans followed and I was referred to an oncologist. He arranged a full PET scan and the results of this were a real shock: extremely aggressive, metastised melanoma, just about all over, and particularly in my brain. Oh dear. And the prognosis was grim, 3 or 4 months was the general life expectancy. So, by now, July was looming badly for me.
My oncologist is a hardworking, enthusiastic young specialist who has been involved in many cancer drug trials and, in his opinion, the only thing he could suggest was a very new drug called Yervoy Ipilimumab. Apparently, it was my only hope at that stage, but it was horrendously expensive. There was no option. Great changes would have to be made, but as a family group we were as one. Yervoy was the way to go. And so the first of 4 infusions was arranged with the others at 3 weekly intervals.
Looking back, the CBHS approval was life changing – things started to look up from this point (despite a couple of hiccups on the way). And by the time of the final infusion, Yervoy was on the Government list, another good omen. July came and went. By this time, I was well into radiation therapy as well.
Then, as the Yervoy kicked in, and time went on, the CT scans started to show signs that the tumours were reducing. Yervoy was indeed proving to be a miracle drug, designed to work in a new way with the body through the immune system and thus on the previously untreatable, metastised melanoma. And I was lucky enough to have the right body to go with it.
I had one more Yervoy round of 4 infusions, and this made me very ill indeed. But after treatment in hospital, I finished the round, with very bad memories of it and a huge weight loss of 17 kg.
With medication for dehydration, bowel problems and swelling of the brain, being maintained and monitored, I started to get my appetite back and started to put weight back on. I was starting to feel OK!
I had another PET scan to see how the last Yervoy had worked and the result was nothing short of miraculous – not just my opinion, all the doctors were just amazed. There was now no cancer evident, anywhere, and the big tumour in my brain was now just scar tissue (and I can cope with the headaches this is causing knowing it is just scar tissue).
I am now on 3 monthly oncologist visits and am due for another PET scan in a few weeks. It is hard not to feel anxious about this, but I have now been told that I am eligible for another new drug should the melanoma recur, and this one is purported to have no side effects, as well as being on the PBS. I have definitely been on a miracle ride through this whole process.
They never found the melanoma which caused all this hassle, and I'm told this sometimes happens.
Modern medicine is a wonderful thing. But so is state of mind. It has to be noted that the journey which had started out so terribly for me, began to turn around from the moment the CBHS said they would back me, and I was relieved of that financial worry. A great weight off my mind. Sam kept in touch all the way and I was very grateful for his support and thoughtfulness. Some fights just can't be done on your own.
Heartfelt thanks to all concerned.
A very grateful, retired CBA officer and CBHS member.