So here I am after cycle 2 of Brentuximab. Of course, in the soap opera that is my life there’s been more drama…
2 weeks ago I noticed a rash on my lower arms. Wasn’t itchy or bothering me so took some Piriton (which didn’t seem to help) and showed it to the docs the following week at clinic. She said it was probably a reaction to Allopurinol, a drug that is commonly given alongside any sort of chemo that helps your body get rid of dead cancer cells. I’ve been taking Allopurinol for the past year on and off with no problems, but apparently you can develop a reaction to any medication if you have a break from it and then start taking it again, which made sense. So I stopped taking it, but no real improvement.
Last week Thursday I went into St James for my second dose of Brentuximab which went down just fine. When I got home I felt pretty shattered, and because we had a real houseful (daughter’s pre-prom gathering) I decided to take to my bed and sleep it off. I remember lying in bed thinking “I feel really awful”. My joints were aching, I felt nauseous and very restless. However I was too tired to get up and check my temperature and have a look at myself. Sometime around 8 that night I suddenly knew I was going to throw up, so launched myself toward the bathroom, and sure enough I did. Em happened to see me on the landing and got a fright because I was as pale as a ghost and covered from head to toe in a rash. She took my temperature, which was in the 39s, and said we needed to call 999 or the hospital. For some crazy reason I said no and that I just wanted to sleep it off. The thought of driving to the hospital in that state really didn’t appeal, and I don’t think I realised how serious it all was. So Em monitored me throughout the night. My temperature dropped back down to the low 38s and I was breathing okay, so we risked it. Utterly mad thing to do.
If anybody else has a reaction to a drug like this please seek medical advice ASAP!
So Friday we called up my specialist nurse who said to come in straight away which we did. The procedure is you go to an assessment ward where you see a doctor and they give you any urgent treatment then decide if you need to be admitted and what ward you should be going to. I don’t know what was going on last Friday but have never seen the hospital so busy. It was like a war zone, people everywhere. I spent about 10 hours on a sofa in one of the day rooms as there were just no beds available. The staff as usual were all brilliant (I know them all so well by now I am on first name terms!) and they dealt with me quickly. I was given a shot of Hydracortazone and Piriton which zonked me out. It stopped the reaction getting any worse but I then started to itch from head to toe. I had to really stop myself from scratching! I was admitted for observation (there’s a real danger of airways closing up apparently) and it was a pretty uneventful, if itchy, night. The Registrar came and saw me on the ward the next day and although I was still looking like a pink spotty leopard he decided that it was safe for me to go home.
A week on from this I am almost back to normal. The rash has subsided back to my lower arms and the itching isn’t too bad. I pop a Piriton tablet if it gets unbearable. The shock was though that when I went to a clinic appointment on Tuesday the doc said they wanted to bring forward my next PET scan to see if the Brentuximab is working. So I’m booked in for Monday next week (11th July). I was always due to have a scan after Brentuximab no. 3 so it’s not too much off script, but it just means I will know sooner than expected what the future holds. I am on the Macmillan forums quite often and there is this term that is used ‘scanxiety’ – when you go for a scan results its truth time, and can be very scary. When you’re undergoing treatment it’s not too bad as its kinda ‘work in progress’, but when it’s scan time it’s a bit like getting results of an exam. But hey, no point in burying your head in the sand, and I am just grateful us people in the West have this technology at our disposal so the pros can see exactly whats going on in our complex bodies. I dont’ know what they did before the advent of PET scans – it must have been a total guessing game!
So the next big date in the diary is Tuesday 19th July when I’ll be seen in clinic and will get the results. If the treatment is working it will either be a) pre-meds to help me tolerate the Brent, b) another sort of chemo or c) fast track to my autologous stem cell transplant. If it’s not working then is probably going to be another type of chemo (not sure what) to keep me in a ‘holding pattern’ while a search is conducted for a stem cell donor through Anthony Nolan and then on to an allogeneic stem cell transplant.