We have rarely made plans or commitments beyond the date of the next assessment, so have lived life in three month blocks of time at best (or shorter periods if Steve has been receiving treatment). As appointment day approaches the tension mounts as we wonder what news the latest scan will bring us - "Scanxiety" as the meso warriors call it.
But for all the uncertainty and scanxiety, being in the three monthly assessments system has been a comfort in many ways....at least someone is keeping a close eye on Steve (other than me); there is an opportunity to discuss his condition and treatment options at regular intervals; we know whether the cancer has shrunk, is stable, progressing or spreading.
When Steve was taken out of the system last December (when the doctor estimated his life expectancy as a "small number of months") it came as a shock after five and a half years of having regular three monthly assessments. It felt like we had been cut adrift. We had lost something that had helped give some structure to the otherwise random and unpredictable pattern of our lives. We did not realise how much we relied on that crutch until it was taken away.
Steve could call the hospital or GP at any time and we had made contact with the local hospice so, of course, he hadn't been cut off from medical help and support. However, not being offered an appointment for his regular three monthly assessment underlined how serious the doctor considered his condition. If I am brutally honest, it also made me think that a "small number of months" wouldn't stretch to three....We were preparing ourselves for the inevitable.
Regular readers of the blog will know that the expected deterioration in Steve's health has not happened - not yet at least! He no longer looks frail; has gained weight; energy levels have improved as has his outlook. In short, he is not the same man as seen by the doctor last December. At least, that was our assessment and the views of family and friends who have seen him over the last few months. What we did not know until yesterday was whether the medical profession would think likewise.
I am delighted to tell you that nurse Hannah, Oxford's new mesothelioma nurse specialist shares our view! She even said to us that Steve is not the person she was expecting to see, based on the notes and letters on his file. In her view, his performance status has improved and he is now well enough to take part in a further clinical trial, if he wishes to do so - an option not open to him four months ago.
There is a mesothelioma-specific clinical trial in the pipeline in Oxford (and elsewhere) which will start recruiting later in the year. The drug is Vinorelbine, one of a number of drugs developed from the periwinkle plant. It stops the growth of cancer by preventing cancer cells splitting into two new cells. It has been used as a first line treatment for mesothelioma and other cancers so is not a complete unknown, unlike the early phase trials and dose escalation studies he has taken part in before. However, there has been no randomised evaluation of its effectiveness as a second line treatment in mesothelioma, which is what this forthcoming multi-centre trial will do. The trial is being lead by Prof Dean Fennel of Leicester University. For more details click here and here.
Steve has expressed an interest, so we shall see what happens...
I still find it frustrating that he is not allowed to take part in immunotherapy trials because of his history of autoimmune disease - the google alerts are flagging up good news for a number of immunotherapy drugs. However, at least Steve has a possible treatment option now, if he chooses to take part and is eligible.
He also has an appointment for three months time, in mid-July, and will have a scan before then which will act as a new baseline. So he is BACK IN THE SYSTEM!!! You have no idea how happy and relieved that makes us feel. We broke open the Prosecco last night and are now thinking about lots of nice things to do between now and mid-July. Life is no longer standing still :-)
We both know that it could all go horribly wrong, but it feels like we have been thrown another lifeline so we will hold on for all we are worth and enjoy the ride!