Lonsurf

FormerMember over 4 years ago

4 replies
117 subscribers
1411 views

Hi All,

I've been on them since may this year for stage 4 colorectal cancer - have multiple mets in liver and lungs.

I had 3 months on Xelox then 2 months on Folfiri, but neither have stopped progression of disease and my CEA just goes up and up. I'm aware that I am now scraping the bottom of the treatment barrel now.

My oncologist has suggested starting on Lonsurf, and I wanted to ask the group of any experiences on this chemo - good or bad!

Sandy

court over 4 years ago

Hi Sandy ,

Sorry to hear this . Going to try and link you into a thread over at Bowelcancer uk that might be of interest to you .

My understanding of Londurf is when it works it seems to work well at achieving stability. So one lady has reported that her husband had been stable for over a year on it . The new site is not letting me search that far back as she wa happy to chat it through with others .

But this discussion might be helpful .

Court

Helpline Number 0808 808 0000

court over 4 years ago in reply to court

community.bowelcanceruk.org.uk/.../19645-stability-in-spite-of-rise-in-ca19-9-so-continue-with-lonsurf

Helpline Number 0808 808 0000

court over 4 years ago in reply to court

We frequently suggest discussions over on Bowelcancer uk if that’s the right platform for you to get the information you need . It’s what is best for you that counts .

I can’t remember if we discussed Keytrunda. England has access to some immunotherapy agents just now due to Covid . Not sure about Scotland etc .

Take care ,

Court

Helpline Number 0808 808 0000

FormerMember over 4 years ago

Hi Sandy

I’m so sorry to hear this and I was going to refer you to Bowel Cancer UK but see Court has already pointed you in their direction. When I was first diagnosed I belonged to Beating Bowel Cancer (which is now part of Bowel Cancer UK) and I found their website extremely helpful and informative.

VickiLynne