Hi  Gill i have just today been switched from Irinotecan to Lonsurf and was encouraged to read the positives in your posts as to how you are managing your treatment with Lonsurf any information or tips you can offer would be greatly appreciated i will be starting Lonsurf 25/9 indefinately and even after an hour with my oncologist this morning am still a bit unsure , but i liked your posts content and your "throwing in the towel comment" as i also feel to well to do so my name is Douglas and i have metastatic cancer in my liver which has grown which is why we are moving to Lonsurf , hope to hear from you  and keep up the fight and take care

regards

Douglas

Hi Douglas, I was so pleased to receive your message.  As I said I have been on Lonsurf for fifteen months and really whilst initially disappointed to have my various  IV chemos stopped and concerned about 'only going on tablets'  it seems to be working for me and I have 'carried on as normal' !    The only thing that has let me down is my Neurophil count, white cell count and platelets which has resulted in a  one week  dellay between each cycle.    My frustration has been that I feel so well but the Chemo Ward have to obviously follow the Protocol and spoke to the Oncologist accordingly, hence the reduced dose.   I also have metastatic spread to the liver and peritoneum.   I don't have any negatives from my point of view (apart from the reduction in dosage) but I fully understand how you feel after your appointment this morning     - it is a lot to take on board when you are not expecting that conversation.     I would say that I am careful i.e. still wear a mask so as not to put myself at any unnecessary risk of infection.     Please come back to me at any time to talk things through, knowing I understand

Kind regards,

Gill

Hi Douglas, I was so pleased to receive your message.  As I said I have been on Lonsurf for fifteen months and really whilst initially disappointed to have my various  IV chemos stopped and concerned about 'only going on tablets'  it seems to be working for me and I have 'carried on as normal' !    The only thing that has let me down is my Neurophil count, white cell count and platelets which has resulted in a  one week  dellay between each cycle.    My frustration has been that I feel so well but the Chemo Ward have to obviously follow the Protocol and spoke to the Oncologist accordingly, hence the reduced dose.   I also have metastatic spread to the liver and peritoneum.   I don't have any negatives from my point of view (apart from the reduction in dosage) but I fully understand how you feel after your appointment this morning     - it is a lot to take on board when you are not expecting that conversation.     I would say that I am careful i.e. still wear a mask so as not to put myself at any unnecessary risk of infection.     Please come back to me at any time to talk things through, knowing I understand

Kind regards,

Gill