Hi Gill, 

I came across your conversation with Douglas re Lonsurf and with it being the first positive i have managed to find online about this type of chemo it caught my attention! 

My Dad has had x2 IV combination chemos over the last year, both of which reduced his tumours in size and enabled him to live well for some months however , once they stopped working the cancer advanced. He has Bowel with liver Metastasis, the liver has grown extensively and so they have stopped the most recent Capox.

He is extremely weak and sleepy after having fought an infection recently / from the cancer having advanced and i am concerned they may retract the offer of Lonsurf due to this. Were there any conditions/critea you had to meet for Lonsurf? Assuming if it is only a tablet form that regular hospital visits may not be required?  Praying that they will allow our nurse to take bloods from home prior to treatment and not insist he attends hospital for check in. Awaiting the next call post chat with oncologist to get the ball rolling… 

Gill, Fifteen months on Lonsurf is impressive, I am so glad it has been positive for you and has enabled you to feel good and continue as ‘normal’.  Grateful to hear of positive stories with this drug thank you for sharing and do hope you’re both doing well. 

Simone 

Hi Simone,

Thank you for your post. I had several different IV chemos which I tolerated fairly well i.e. I would have continued but my Oncologist felt they were no longer working - my tumours did not reduce in size.    I have metastatic spread also, like your Father.    It is now 19 months that I have been on Lonsurf.

I don't need to go to the Chemo Ward anymore, it is tablet form only, one hour after breakfast and one hour after supper days 1 - 5, then a break and days 8 -12.   Then two weeks later repeat blood tests to ensure Neutrophils are healthy enough for next course of treatment.   Chemo Ward ring me with results and then Lonsurf collected from Hospital Pharmacy.you can't collect from GP.    I rarely go out, once a week for supermarket shop and wear a mask so don't take any unnecessary risks  but managing well at home.

Please contact me at any time,

Gill

Thank you, do keep in touch.

GILL

Hi Douglas,

I hope you don't mind my getting in touch,  but I had been thinking of you.   I hope your treatment is going well.

Happy New Year,

Kind regards,

Gill