I had 5 cycles of FCR four years ago, and although the nausea was dreadful, I didn’t miss a day of work as I’d timed the treatment each month to start the day before my two long days of piano teaching at the local primary school. By the time my second day's teaching was ending, the nausea would kick in, and I’d get myself home and then not move or eat for five days, recovering in time for work the following week. I lost half a stone in weight each cycle from my normal weight of just over 8 stone, and although I begged my consultant for an anti-emetic syringe driver he insisted I wasn’t taking the anti-emetics properly and so it was my own fault that I suffered so much with nausea. Finally on my fifth (and final cycle of FCR) he agreed to the syringe driver, and I basically sailed through the treatment that month with not even a hint of nausea! His response when I saw him a couple of weeks later was ‘What a shame we didn’t try that sooner’.
Anyway, I started my first cycle of BR last Monday (12th January). I’d been told it was a lot gentler on the system than FCR, and so it was with a mixture of hope and trepidation that I began the treatment.
Day 0 - Rituximab infusion all day. The nurse managed to get the cannula into a vein on her first attempt, and all went well, until towards the end when I had a fit of shivering and chattering teeth, and so they gave me an extra dose of hydrocortisone which soon sorted me out.
Day 1 - Rituximab until mid-afternoon, and then Bendamustine for 1.5 hours. Unfortunately two nurses had four attempts with cannulating my veins before any success. The backs of my hands were well-bruised and battered, and I felt sick with pain.
Day 2 - Two bags of blood (my HB had dropped to 5.9) until mid-afternoon, and then Bendamustine for 1.5 hours. In spite of the fiasco the previous day with cannulating, today there were five attempts to get into my veins (three different nurses) with one vein popping on my forearm. I asked the nurse just how many attempts until you call it a day, and she said ‘Oh, we’ll get into a vein don’t you worry!’
I had to come back again on Friday morning for two further bags of blood, and my daughter phoned the day unit on Friday at 8am and said I was in no fit state for any further treatment. I hadn’t eaten since Tuesday night because of extreme nausea (my consultant had put me on a cocktail of three different anti-emetic drugs, but they unfortunately didn’t do the trick) and I was now full of dread at the thought of any further cannulations, and very weak and tearful. They insisted that I come in though, with the promise that they would anaesthetise my veins before going into them (why hadn’t they offered that on Tuesday and Wednesday?) and the warning that if I didn’t go in, I’d probably end up in A&E over the weekend with less experienced doctors attempting to go into my veins. When we arrived at the day unit, the nurse asked if I had ever seen the consultant psychologist at the hospital regarding my anxiety about cannulating and chemotherapy (I’d avoided BR as long as possible, in the hope that Ibrutinib might become available). I was too weak to reply, and my daughter meanwhile wanted to punch her lights out, because the nurse had implied that it was my fault for being such a worrier. We should have asked her who on earth goes into chemotherapy willingly and joyfully, especially when they’ve been through it all before, and how would she feel if she had been repeatedly stabbed in the veins!
So another 8 hours spent in the hospital on Friday having blood transfusions, and at the end of the day, they said they had decided to fit me with an anti-emetic syringe driver. Hooray! Except the nurse who fitted it did it wrong, so throughout Friday night I had the syringe pumping doses of the drug into my damp vest instead of my tummy. Saturday morning I was exhausted, feeling incredibly sorry for myself and so nauseous. The district nurse came round and sent me off to shower while she sorted out my syringe driver and got the thing working correctly. She was my saviour to be sure, and had a wicked sense of humour too!
I emailed the Macmillan Haematology Nurse asking if I could have a Port installed as I really couldn’t bear the thought of any further cannulating - my veins are useless at the best of times. The response is that they can either do a Port or a PICC line, but they are leaning towards doing a PICC line. Does anyone have personal experience of either of these or preferences of one over the other?
So at the end of cycle 1 of BR, I would say FCR was a walk in the park in comparison. I’m a youthful 56 and have always had bags of energy, but what has really knocked me for a six is the utter feeling of exhaustion that I feel - an almost out of body experience which remains with me more than a week later, and my stomach is still not completely recovered yet. Needless to say I had to cancel all my teaching last week, and I’ve been told to go back for yet more blood tests tomorrow morning as my platelets had dropped to 19 last Friday...