I have been on Lonsurf for 13 months with no side effects.    I was initially on 55 mg morning and evening and six months ago it was reduced to 40 mg morning and evening as each cycle I had to go one extra week before my Neutrophils bounced back to 2.      I saw my Consultant on 27/7/23 and he was surprised how well I was doing with my CT scan being the same as 3 months previously and my CEA still at 6.

I went  to collect my Lonsurf on Wednesday 9/8/23 and found it had been reduced to 30 mg twice daily.  I contacted the Ward and wrote to my Consultant stating what we had agreed on 27/7/23 and he said I was at risk of infection because of my neutropenia (which I had had for 12 months and never had to go more than one week before starting the next cycle)   I am in excellent health, caring for my husband who has just come out of Hospital and I have no side effects.

I am very  disappointed and feel I have nowhere else to go now as he will not re-instate the 40 mg twice a day.   Is there anything I can do ?  I had one blood test showing Neutrophils at 2 after seeing him on 27/7/23

Many thanks,

Gill