I am new to the Chat. Just wondered if anyone has been taking Longsurf and what their thoughts are of this and how it has affected them. This form of medication has now been suggested for me by my Oncologist.
Welcome to the forum . This has come up a few times recently but I think on this forum they are also just at the recommendation stage . However I think there are more people using it over on Bowel cancer U.K. forum . They also have a Facebook page and you might get some user experience feedback over there . A lot of people use both forums and we would also be happy to support you here but want you to access the best information on your question .
We did have a poster a few years ago and it worked very well for her husband . Think it seems to be aiming at stability and it did exactly that for him .
Thanks for this. I will head over to the Bowel Cancer UK forum and see if there is more information I can find. I began my cancer journey 4 years ago - Bowel Cancer Stage 4 with liver mets. Treatment I have receivied to date includes Folfiri, two major Liver operations and a Bowel operation. Also Folfox. Longsurf now appears to be the only option left for me. At the moment I am pretty mobile, can still drive and enjoy doing different things and want to remain so for as long as possible, hence my question.
You sound as though you have endured a lot of treatment very well . You might also like to discuss with your oncologist some of the clinical trials currently on the go . I noticed when looking for another poster there was one combining lonsurf with another agent ! Obviously criteria galore but since you are investigating it might be an opportunity to ensure everything has been explored .
There are also some oncologist who are more specialists in dealing with mutations and I know some of the people on Bowel cancer U.K. ‘s Facebook page have that information if you are considering widening your consultations .
I totally agree with you . Your quality of life of very is important and retaining that through treatment a priority.
Thanks so much for this. I have requested an appointment with my Oncologist and wanted as much feedback as possible so I can discuss this with him. I really appreciate your replies.
