As mentioned in the previous blog regarding restarting treatment I’d up date you about what took us there, the people we met and the experience we had.
Well let’s start this one by acknowledging we love a good road trip and I honestly believe a long drive with chats is good for the soul.
The first second opinion takes us up to Manchester and the renowned Christie – who sets its self aside for ground breaking treatment and of few places outside USA to be able to deliver proton beam therapy (great little documentary on BBC).
So the journey started myself and mum, Vicky was due to get the train up after football training. Me and mum head off and use the time to catch up on the whirlwind trials appointment (to follow), her road trip around Italy and all that’s happened in the week following the news that 2nd line chemotherapy (oxaliplatin) had stopped working. We also managed to take in a herd of cows casually crossing a bridge in a very orderly fashion. This journey wasn’t taking us straight to Manchester we were going to catch a bite to eat and a chin wag with Jenna – even though she tried to escape and get the wrong day. Well, the food and company was delightful, although some of the other bar dwellers were a little less likeable, but a wonderful evening. To top it off though, mum realises she has left all her stuff at home 😂😂!!
The journey continued, we arrived in Manchester checked in (all the keys were in the right place) and I pop out to collect Vicky from the train station. We have all arrived and have an early night ready for an 8:30am appointment in the morning (I love an early hospital start… NOT).
We’re off to meet Dr De-fence, who seems to be spoken highly of by many in the Oncology world and working at one of the top hospitals in the country (Addenbrookes still very much up there though).
He first wanted to know what had made us make this seemingly long journey to him all the way for this second opinion. We’ll, as mentioned, I love a road trip, love car chats, driving and overall I don’t mind a little adventure. The worst part was probably meeting new people, that’s when I was out of my comfort zone. The purpose though was we felt we’d hit a bit of a dead end and wanted to know if anyone else could suggest something else to try and get this train back on the track and explore all options, whilst we could, if nothing else, have piece of mind that we’re on the right track and had explored all options.
Bloods sailed by smoothly with an electronic system that seemed to take all the bother and waiting out of this system and they got my port we are off to a cracker. We sit down with Mr De-fence and I explain my medical journey up to now and to my relief and also in line with my expectation, he believes Addenbrookes are and have thrown everything at me: lots of chemo, which I had been tolerating and responding to, SIRT and immunotherapy (cetuximab). He said following trials was a good option and feels that I would be getting just as good access there as I would from the Christie, so keep that in the back pocket. He agrees with Addenbrookes, which I was expecting to be the answer, however he thinks if we do wanna try all options (that’s why we are here last chance saloon) then he has 2 suggestions:
1) Get an up to date MRI and challenge some liver surgeons, especially one or two he recommends = booked in and sent away (more opinions to follow all with their own journey)
2) Why start lonsurf if we haven’t rechallenged irinotecan, which we hadn’t realised, although successful for nearly 40 rounds, I havent tried since November 2016 and we do know that during SIRTex my liver did change as it sparked a resurgence in the oxali on a few tumours. So let’s give/suggest that a go before starting lonsurf, which doesn’t have great response rates on Google and is discussed as the end of the road, not that this couldn’t and hasn’t let to some people gaining some control over their tumours.
We parted ways with some actions to do a new positive idea and overall a successful appointment even if he did feel we’d travelled a long way just to hear I/we/my team were doing things right… If that’s all that had been said that would have still been worth the trip.
Food for thought and something to take back to Dr Awesome to discuss and see what the plan may be moving forward.
As you can see from the previous blog what’s been going on? Irinotecan and cetuximab was discussed and agreed it was worth a shot bit sceptical of cetuximab as reactions are high we’ve known all along and we would have to get approved funding. But we’re on the case and at least for now irinotecan has started (3 rounds in) and hopefully cetuximab will be introduced soon and let’s give these tumours an all out reattack.
Journey home begins, accompanied by annoying liver pain which I’d been struggling with for a few days and had been trying to ignore to get through this (not working). Chats, tunes and singing along and that’s one Road trip ticked off much different to my previous trip up to Manchester, which if anyone remembers is when this journey all started and this new journey through being ill began.