So a month since my last post and thought I drop another quick one out. The first cycle didn’t go quite as planned with a bit of a false start on day one (28th April). They had decided to do the treatment over 2 days to check that my body could cope the Cituximab ok. The idea being that I had that on day one, and then the rest of the Folfori chemo drugs on day two (then go home with the pump for two days while it all went in). Anyway it didn’t quite work out like that in the end. I was only 6 mins into the cituximab (25ml out of the planned 1000ml) and suddenly got hit with a very hot flush and couldn’t breathe…have to admit it was a little scary as it came on so quick and hard and totally out of the blue.
Anyway I had nothing to worry about as the team on hand were amazing!…they stopped the treatment immediately and put me on oxygen to stabilise everything.
Looking back on it now I have had a little chuckle to myself……there was a chap sat opposite me in the treatment room when I first arrived. Anyway the poor guy, you could tell this was his first cycle and he was obviously understandable very nervous about what was to come. Anyway, bless him when he saw my reaction you should have seen his face!…a nurse came and closed the curtain between me and him and I could hear her saying reassuringly to him that “don’t worry that is a very unusual reaction and not likely to happen to you”.
What made me laugh is that at the exactly time, the nurse on my side of the curtain said “don’t worry Tom this is a fairly common reaction for someone having this drug for the first time, you’ll be ok” 🤣. Bless her, I know both of them were doing their very best to reassure us both and honestly I think they managed it in their own way.
Anyway the up shot was that they decided that I needed to get home and rest up for the day as it has been a bit of a shock to the system. It was really quite odd as I have to admit feeling instantly really tired…after coming home I got a power nap for an hr or two which completely sorted me out. I managed an 8k on the treadmill in the afternoon and went to bed feeling good once again ready again for ‘try number 2’
So the next day exactly the same routine only this time they administered it incredibly slowly and also helped by giving me some pre meds (steroids)…thankfully this did the job and it all went without a hitch👍. I then went in the next day (Friday) and had the rest of the chemo drugs. I was then sent home with the pump which they then came and took take off on the Sunday.
I have to say that the side effects have been very different from the chemo I had all those years ago…the main one being the reaction it has had on my skin…fairly nasty rash on face, neck and skin. I’m told this is entirely down to the cituximab and totally normal. When I saw Alice two weeks later (the day before what was meant to be cycle number 2) she decided that I needed another week to recover a bit more so that’s what we did.
So here I am now having just had cycle 2 (yesterday)…this time they managed to get all the drugs in one go (only 50% of the dose of the cituximab this time…should go back up to 100% next time provided the side effects aren’t too bad).
Hair is gradually starting to disappear….still clinging onto what I have for the moment though👍. Ollie is waiting in the wings with the razor and will be ready when called in🤣
The great news is that I haven’t felt any really bad sickness (a little bit of a hangover type feeling on a couple of days but that’s it…and no before you ask I wasn’t drinking!) This is such a relief as it has meant my appetite has been good and I have managed to keep running every day since the chemo started (other than the skin being a bit stingy from the sweat no problems at all).
I think it’s fair to say that this chemo regime will be a fairly challenging one (compared to the folfox), however now I have started I do feel much more comfortable on how to manage going forward. A few more cycles and I hope to have cracked it!😀
Tom! You remain the most amazing person! Love to Cat and both your boys! Keep picking those spots x
Tom u and the family r so brave sending all my love to u all
Keep fighting Tom. You’re one heck of a brave fella!
Your strength is amazing, keep it up mate! Best of luck!!
Keep on being positive Tom! Sending big love!!
You’re incredibly resilient. You’ve got this!
Ps the nurses bit made me chuckle too
Tom you made me laugh….and I wonder if the nurse realises your idea of resting is a power nap followed by treadmill. Having seen my husband attacked by two boys with clippers during lockdown…film Ollie and let us all see the fun!!