Next steps… RESEARCH!!
Well we have been at the is stage before chasing the next option (before this one stops), preparing for what other options could come next, other drugs available – Avastin the one I especially want to explore, trials? are there any suitable ones about. This time it leads us to the Sarah Cannon Centre (again back in London). The centre prides itself on providing cutting edge treatment options for patients in the community both NHS and private.
After a chat with Dr Strong Name and Pam (Dr Imbers CNS) a referral is in and we await the appointment, this comes relatively quickly and off to London we head to meet Dr Arkineau to discuss any other options or his thoughts, whilst carrying on rechallenging with FOLFIRI and Cetuximab (hopefully it’ll continue doing a strong job).
Dr Arkineau was lovely, knowledgeable and seemed to take interest and care in my case. Going on to explain that with the amount of chemo I’d had (97 rounds now) that he would expect more long term side effects: neuropathy, bone marrow depletion etc which suggests something in my body must be metabolising the chemotherapy. So let’s get some genome sequencing done to find out what may be allowing this to happen but also seeing if the tumour is exerting particular genes that maybe able to be attacked with chemo therapies not neccesarily still available or not specific to colorectal cancer.
The appointment felt positive, much more positive than my last trials appointment, this time I left with options and opinions and I felt like we hadn’t left with nothing, it left me with hope a more achievable hope than surgery and hopefully something to hang on to.
In order to get this genome testing done a new liver Biopsy was needed as my previous biospy was nearly 5 years ago and they hadn’t gained a huge tissue sample at the time not enough to be used this time round. I was obviously not thrilled by this thought mainly as you have to lay perfectly still for 6 hours something I’m not good at but needs must and I’ll get through it. Thankfully I have a weird ability to compartmentalise things so I’d forgotten any pain etc from this procedure all I remembered was big needle going in and then boom little bits of liver tumour shooting out into a dish a bit like the rotating belt at yo sushi 😂!!
Off to London we go for the Biopsy, whole day although long goes relatively smoothly and on our way home by 8pm. The Biopsy wasn’t too terrible the worst part was the ultrasound pushing down on my poor delicate liver and resting on a rib I’d hurt the week before playing football.
Genome sequencing can take 5-6 weeks, mainly as they fly these little samples over to the USA where the genes are tested and they look at over 400 genes to find appropriate treatments, symptom links, drug effectiveness and much more. Incredible to be able to find all that out from a tiny slither of tumour.
Now the waiting begins but no rest and the next day straight back into the chemotherapy unit and plough on with the 95th round of chemotherapy. Another shot of FOLFIRI and Cetuximab meaning my friend the pump comes back home with me until Friday. However this weekend I had a plan I wanted to play football on my chemo weekend for those who know this has not gone particularly well in the past, many stories of pulling over being sick, suffering for days after and generally making myself ill 🤒. However this weekend came and I had some energy and had managed an okay Saturday so Sunday came round and the boots were on and so were the gloves 💪. The performance wasn’t too shabby and miraculously the game went with storm Ciara causing chaos.