Saying No to a Clinical Trial

Last updated: July 2018

The first week was spent in hospital – I don’t remember all that much. I remember my drip who I named George beeped a lot. (Typical man needing constant attention….) I don’t even know why I was on a drip. I was given antibiotics (once again, I don’t know why) and had a massive reaction to them as I’m allergic to penicillin and no one checked first. I ballooned with water retention and went a really pleasant shade of raspberry. Not attractive. Dr. Dave kept me company and got in trouble form the nurses for not doing his job. I had everything explained to me in doctor language by consultant number 1 who loved me for a week (I’m a rare diagnosis) until I declined their trial and then their attitude towards me changed drastically.

Feeling pressured

I was put under so much pressure to join their trial. I’m so glad I said no. It would have been horrific if I had done it. I was hugely intolerant to Imatinib (Gleevec), an oral targeted therapy, the standard drug to treat CML at the time, on the standard dose. The trial was Imatinib as normal, double the standard dose of Imatinib, or Imatinib with interferon. If I had ended up on the interferon arm or the double dose arm, it would have meant complete and utter hospital bound misery. I said no because the thought of having to inject myself with interferon a few days after I was told I had cancer was just too much.

The nurses were amazing. Completely and utterly amazing. They looked after me. Told me I didn’t have to do the trial if I didn’t want to. Let me have my friends with me whenever I wanted to as long as we were quiet. They didn’t force me to leave my room, although I could have done it. I was very lucky and had my own room or rather, or I was so ill I didn’t realise it and had my own room on a high dependency ward.

After a week in the hospital on lots of oral treatment to kill off the huge excess of white blood cells – I think I had 112,000 leukaemic cells in that first blood test – the doctors couldn’t believe I was walking and talking. If I hadn’t had gone to the doctor that one morning, I would have collapsed over the weekend and been admitted through A&E.

Leaving the hospital

I was kicked out of hospital on the day I declined the trial, which was just as much of a shock as going in. I had asked how long I would be in if I did the trial and I was told maybe months. To me, that sounded AMAZING!!! My own room. Fridge en-suite. TV. DVD player. A routine. I knew when the tea trolley came around and the meal times. I went to boarding school and I become routine very quickly. I was also in shock, had very little concentration, and slept a lot, so being in that bubble of safety for that long sounded good to me!

The day I was discharged was the day I started Imatinib. The standard treatment at that point. I was so intolerant to it. It caused itchy and pricking skin to begin with and then pain. I can’t even begin to describe the pain I was in. I had to move back home to be with my parents as I couldn’t look after myself. I could just about hold a glass of water. Every cell in my body hurt.

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