trifluridine/tipiracil (lonsurf) with bevacizumab (avastin)

 Neilio57 

Sorry to hear that . You are still entitled to a second opinion. Sometimes going to a hospital outwith the health board you are under helps .

Did they mention any potential clinical trials ?

Take care ,

Court 

Hi Neilio57,

I am so sorry to read your update, and the withdrawal of treatment, especially as you are feeling well. How incredibly frustrating!

As Court stated, have you had or thought of having a second opinion? This seems so unfair given the circumstances and the fact that you feel well. Or as others have previously advised elsewhere a re-challenge of a previous chemo?

As for us, we are just waiting for my husband’s next scan in August, the CEA is still extremely high and therefore we are not expecting good news. Just continuing to live the best life we can, whilst we can together ️

All the best x

find.cancerresearchuk.org/clinical-trials

Hi! Good to hear from you. There may be trial at The Christie in Manchester, but clatterbridge don't actually do any apparently. At this point I can't tell what is and isn't the truth coming from Clatterbridge. I've asked to be transferred to the Christie and Clatterbridge are dragging their feet. Hope you're okay 

Hello everyone! 
just to catch up to see how everyone’s treatment going? 
are you still on lonsurf/avastin? 

Had second part of my 8th cycle last week. The cycle started 2 weeks late due to low neuts. I have got an appointment to start my 9th cycle 7th August and a CT scan on the 12th. Had a chest infetion earlier in the week  and presribed antibiotics but was still Ok to have Avastin. 

Genarally tolerating Lonsurf/ Avastin better than previous regime.

Regards Francis

Thank you for your respond. Jlikescats 
I’m glad that lonsurf and avastin still work for you and you can take them long term. It really gives me a hope and I would love to hear from the others only positive stories.

All the best. 

Hi! Still on treatment (since last November), although I am skipping the avastin infusion this week as I am on holidays. Feeling good but my muscles are very weak. I'm trying to walk every day but I'm in the south of France and it is very hot and very hilly so finding it hard! Also having to take a lot of loperamide... My CEA was stable a few weeks ago (it has been steadily increasing from 7 to 59 between January and June) and my last scan in June showed stable disease (I have 13 lung mets and 1 liver met). I had decided to take a break from work when I started treatment but I will return 4 days a week in September.

Hope you're all doing well!

Good to hear that your disease is stable and you are on lonsurf&avastin long time.
I wish you all the best and enjoy your holidays.  

How is every one?