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Beating Bowel Cancer Community

Stage 4 bowel cancer


Stopping Lonsurf

Hi folks I've not posted before but have been long time lurker so to speak.There seems to be a wealth of information on this site but I just have a couple of questions.
My nephew commenced on Lonsurf in December and scans have shown stability. However, he has recently become so poorly and suffering from anaemia and constipation that he cannot receive his next round of treatment. What else can he do? Is Lonsurf really the last line of treatment and will he be able to go back on it if his bloods improve? We are just so heartbroken for him and don't want to miss any avenues that may still be open.Thanks


Hi @Starrysky,
I am so very sorry that your nephew is poorly just now. I do not know the answers to your questions but it is the case that if someone is just too poorly to receive chemo/treatment and would be made worse then obviously, they do not go ahead at that time. I think it would be best to ask the oncologist about this really as regards what the thinking is. There may be a possibility of clinical trials but I don't know about this, only that they exist. Others on here are far more knowledge but I just hope that he he'll get a bit better and surely both anaemia and constipation can be helped with meds.
Lots of love,


Thanks Gypsy, I appreciate your reply. I hope he can get back on the Lonsurf as it did seem to be effective at controlling things and now there is just the worry of what is going on in there while treatment is stopped.


Hi @Starrysky. If the Lonsurf is achieving stability it is working!
Hopefully a break from Lonsurf and meds as @Gyspy has said will sort out your nephew's anaemia and constipation.
Once he is in a better physical shape and his blood returns to acceptable levels I can see no reason why he couldn't go back on Lonsurf.
Besides Lonsurf there seems to be a good few trials on the mother's oncologist has mentioned trials..and trials are often mentioned on this forum.


That's what I thought too Jaap. It is having an effect so praying he can return to this or maybe a drug trial. Thanks for your response.


Hi @Starrysky is privately funding Avastin an option?? :x::x:


Hi @HH79. He doesn't have private health insurance so I don't think it is an option. I dont know much about it though. Do you know how much Avastin costs and if it has had much success? I think i have read on here some people take it in addition to lonsurf? Also how do you go about getting it, would the oncologist prescribe it as long as you have paid for it? So sorry for all the questions.


@HH79 You need to find out if your hospital will allow you to pay for avastin alongside NHS treatment. It took me a long time to get an answer to this, and involved a conversation in Waitrose with the hospital CEO who I happened to know as I had taught her children. In the end for various reasons, not least the success of standard treatment, I haven’t taken up avastin though it’s possible I might in future. It is very expensive. Think it was about £1500 a time but you would need to check this. Not to be 7ndertaken lightly as it doesn’t work for everybody and there are no biomarkers to tell you if it will work for you - or if it is working once you are taking it. It could be the other drugs. So no easy answers on this.


Sorry should have tagged @Starrysky as well as @HH79 I to previous post!


Hello @Starrysky so sorry to read about your nephew and assume he's like me an KRAS mediated cancer where we cannot have the immunotherapy option. I can only hope he can go back on Lonsurf and if not then hopefully a clinical trial option.

Hugs and positive healing :x:


Hi @Barbara thank you for answering for @Starrysky. I actually already have Avastin
@Starrysky hope you can get something sorted to try Avastin :x:


Thanks everyone I really appreciate the time you have taken to answer my questions.