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Positive stories about LONSURF

Hello fellow forumites it is now seven years since diagnosis.Unfortunately i think that the chemo cupboard is now almost empty and my onc put me on a three month chemo break despite there being a slight increase in my tumour. Last week there was further growth on my liver and my onc,who is a very nice man, felt that i could extend the chemo break by another 3 weeks.I guessed from this that my options were running out and i was somewhat taken aback when he told me that in three weeks time he would put me on LONSURF.This really startled me as i had read somewhere that LONSURF was an end of the road treatment and that it had some awful side effects. Iwould appreciate it if some of you have heard positive stories about LONSURF. my onc told me that he would give me a reduced dose to lessen the side effects. H owever ,i think it is really bad news and that he is afraid of spooking me.Any positive stories would be much appreciated. Also it does not help psychologically that i will be beginning LONSURF during the predicted peak of the CORONA VIRUS. Best wishes BICHON


Hi @bichon, I have no experience of LONSURF but just wanted to send my best wishes to you :x:


Hi @bichon. I remember there was one person on this forum whose husband I think was on lonsurf for a year with minimal side effects and no cancer progression. So there is hope!


Hi Lauren59 and Jaap many thanks for your kind and considerate thoughts and wishes.Much appreciated. BICHON.


Good morning @bichon, I have read of people who have been on Lonsurf for over a year and have had very manageable side effects.

There are some positive stories on here and on the ‘Living with Stage 4 Bowel Cancer UK’ website. However as you are no doubt aware there are also people for whom Lonsurf has not helped.

Maybe have a search of this site (or get someone else to do it for you!) to find those people with positive stories. Please stay in touch, Kim :x::x:


Hi @bichon , my hubby didn’t get on at all with Lonsurf, however he did get on well with Stivarga. I did a lot of research about this at the time, and apparently (then) the Lonsurf was shown to be more effective if it was given after the Stivarga.

Good luck

Sarah :x:


Hi @bichon its a while since I posted on here but I dropped by and saw your comment. I’ve been on lonsurf now for 8 months and stable. Side effects for me are fatigue and low blood counts so treatment tends to get pushed back a week. Easiest treatment so far ( previously had folfox and folfiri with aflibercept. I’m looking to add avastin to it in a couple of weeks ( self funding at £2200 per fortnight) as recent trials are showing some promising results