Christmas approaches — The road gets bumpier…but we get there
20/12/13 — Disaster strikes at my pre-op when I am told the date for the op has moved to 24/01/14. Not good because I want this op asap and also because it may upset the Delcath plan if I’m to be ready for another op by year end. This is very confusing and distressing so close to a well earned Christmas break when we hoped we could relax. I call Gen who leaves work on her last day of term and she goes to the PALS team and complains while I complete the battery of pre-op tests.
20/12/13 — After the pre-op I catch up with Gen who has spoken to the scheduling manager who has promised to liaise with DM to sort out a date. Why is the date for the resection becoming so tricky?
24/12/13 — Last appt before the op (QE Oncology) and on the way there Radio 4 news announces that a surgeon at the QE has branded his initials onto a patient’s liver and has been suspended. It occurs to me that the rest of the team are having to pick up his workload. That said, the scheduling manager and DM have gone out of their way to reinstate my op and have been very helpful. A look on the internet reveals that the local news is carrying stories of patients who’ve had their liver ops moved by similar timescales!
24/12/13 — Neil Steven at the QE is fantastic and offers a different perspective, suggesting even using RFA to get one lesion and resecting the rest. Such an approach would prime the immune system to respond better to later systemics and is an interesting approach which I run by So’ton. Their position is that with Delcath afterwards I would achieve this anyway because any dead cells killed by Delcath would have their protein matched by the immune system. That makes sense so I need to make up my mind on that score. Resecting sounds best if Delcath will do that anyway. I’m getting to understand much more about how the disease operates and we have trawled lots of research papers and have several family members (some of whom are GPs) looking into different areas for us. One more thing, NS says that any systemic work can be done at the QE with So’ton in charge which again will be a big bonus. Need to plan to see this chap again.
27/12/13 — DM emails Gen saying that a cancellation has occurred and thankfully I’m back on for Weds Jan 8th (only 2 days after the original date and well within what So’ton we’re going to offer). We’re really grateful for this and can now relax before the op.
30/12/13 — Have now seriously started making plans for stacking up treatments in advance. After resection comes the Delcath, after the Delcath comes the systemic regime. Possibly Ipi, but better Ipi + Anti PD1 which has had very good response in trials. The Anti PD1 drug (Nivulomab?) is now off trial and will likely become available for compassionate use later on in 2014. On its own it has shown remarkable response in cutaneous melanoma and in conjunction with ipi is apparently better yet. After that there is the Adoptive Cell Therapy treatment (using TILs – Tumour Infiltrating Lymphocytes, with InterLeukin 2) and to that end I’ve been in touch with Prof Robert Hawkins at the Christie in Manchester who are leading on this; whilst he is aware that I’ll have other treatments first he has asked for my GP to make me a referral to go up for a chat.
07/01/14 — Pack my case & buy a new pair of pyjamas all ready for a week long stay at the QE
08/01/14 — Go into Birmingham’s QE for liver resection first thing in the morning. To be continued…