I started my new regime (Folfox and cetaximab) last Friday. I thought I’d leave it a week to settle down and see how it goes.
Firstly though I do have to mention my PICC line. The fantastic staff at Northampton General went through everything they were doing to me and more importantly why they were doing it. I had had 5 sessions of Oxylaplatin through a cannula and each time I had quite severe pain both during the infusion and for up to 2 weeks after. The PICC line means no more cannulas and hence no more discomfort. I realise that they’re not for everyone but I would recommend one if given the choice. As with everything cancer related there are draw backs.
Showering and bathing are a bit of a nightmare. I have a cuff to wear in the shower that goes over the line but still seems to leak. I have been recommended another one, more expensive but I’m told well worth the investment.
Last Friday was a very long tiring day. Starting at 10 it was a series of flush, treatment, rest, flush, treatment, flush, treatment, flush then attach the 5FU pump. I eventually left at 6.
It couldn’t be helped. My first infusion of Cetaximab was spread over 2 hours (I’m told this will be 1 hour for subsequent treatments) and then I had to wait an hour to see if there was any reaction. There wasn’t so then we had the Oxylaplatin, etc.
The pump was again something to get used to. I did feel a bit self-conscious with a tube running up the inside of my shirt but soon forgot about it. I found an old money belt and used that to keep the pump in. It was also useful when sleeping as I was anxious about squashing the pump (No chance) or interfering with the line.
Somehow I managed to put a kink in the line which meant that the pump wasn’t as empty as it should be and I still had about a third of a bottle when I was due for disconnection. A quick trip to hospital (Sunday afternoons are so peaceful in hospital) and advice to come back on Monday. No problems and all sorted.
So far I haven’t had any side effects from the Cetaximab. The skin on my hands is a little dry but I’ve been given cream to counter that. I haven’t as yet developed any rashes. The antibiotics I’m on are keeping that at bay. We’ll see how things go.
The one thing I have noticed though is my levels of tiredness. I don’t know if this is a consequence of the new treatment or just an accumulation of all the treatment I have gone through. There have been some very difficult days. I work part time and Tuesday is my normal non-working day and I usually have a list of jobs I’d like to get done. Nothing outrageous but all necessary (tidying in the garden, sorting out car insurance etc). I went to hospital for a blood test as normal. I returned home sat in a chair and then woke up 5 hours later.
I’ve also been in quite a bit of pain. I’m trying to keep a food diary to see if there are any trigger foods that cause ‘discomfort’. I’ve heard that onions are a bit of a no no but I think everything I cook has onions in. I've read lots of advice but I feel that I should find out what works for me.
Also I can start to feel the changes in the weather. Extra layers are a must, plus a wooly hat!
I'm due to have my second cycle of Cetaximab today. I'll let you know how it goes.
