Friday, 7 September 2018

Immunotherapy - ipilimumab and nivolumab

Due to an infection, I had to stay in hospital longer than expected and so immunotherapy was pushed back to 16th January. That was probably a good thing in the end, although it didn't feel it at the time - I tend to dive headfirst into everything as soon as the bell rings so it was frustrating as hell to be lying in bed looking at a leg full of tumours and thinking right that second I could be having an armful of drugs to kill them. The reality was that my body just wasn't strong enough to cope with being up and about, and I needed a couple of weeks in bed to muster the energy to face the challenge ahead. 

Walking into the chemo ward for the first time is about as depressing as you'd imagine. Row upon row of big chairs with frail people in them, attached to stands full of poison being pumped into their bodies. And I was about to become one of them. 



If you're reading this because you're about to have immunotherapy for the first time, then don't worry. It's a doddle. My only advice is to take something to read/watch, and to drink plenty of water beforehand so they can easily find a vein. 

I have notoriously rubbish veins so it took about 20 minutes 3 people and a heatpad before someone finally managed to canulate me. The process takes a few hours to go through. It starts with a saline flush, then the first infusion which is about an hour. Another saline flush for 30 minutes, followed by the second drug for another hour. That's finished off by yet more saline. You then stay in the chair for a short while, just so the nurses can check you're alright and not having any adverse reactions. 

Immunotherapies 1 & 2 were absolutely fine. They left me feeling very fatigued of course, and by now I was in a lot of pain because it was clear I had internal tumours as well as external. I had a big lump inside my ankle which was causing me a lot of pain, and I still had a lot of post-operative pain as well. But on the whole, I didn't really have too many side effects. 

I'd read that 3 combos was about average but I was determined to get all 4 combo treatments then move onto single treatments of nivo. If only my body was as determined and strong as my mind. 

27th February, the day before my 40th birthday, was my third treatment. My lovely friend Liz had offered to keep me company as I had my infusions and we had a fun old time as the drugs filled my veins. Towards the end of the last drug, I began to feel quite sick but shrugged it off and drank some water. After the last saline and the requisite wait, I made my way downstairs on my crutches and was suddenly hit by a wave of dizziness and nausea. Lovely Liz got me a bottle of water and helped me to the car where my husband was waiting for me. Never one to give up, I defiantly refused to go straight home and went to see my friend Garry before he went on holiday. By the time I crawled into bed, I was in serious need of a sick bucket and a glass of water. My life was about to change and not because I was turning 40...

My first day of immunotherapy. I 
was feeling so positive and brave!


No comments:

Post a Comment