Anyone with experience with Folfiri and Cetuximab?

Hi SteveF If you click on the search button at the top left of the screen then you can type in folfiri and cetuximab and it will bring up previous posts which mention these words?

Amazing thank you. I couldn't see the wood for the trees

No worries. Hopefully some of the members who’ve had this chemo will pop in later but thought this would tide you over! It’s hard facing the unknown isn’t it and nobody can say what side effects you may get but there’s lots of help on here so please keep posting x

Hi SteveF 

My mum did ten months of Cetuximab as a single agent so did get to see exactly what it was capable of . Unlike chemo it did not appear to accumulate with each cycle but seemed to take turns . One side effect would pop up then shrink back . They also seemed to take turns with each cycle bringing slightly different side effects . But on its own it really was doable .

The rash did arrive but she was on constant antibiotics. She was also given a special cream to wash with and ones to apply as the skin gets very dry but if you are careful it works . She had a special steroid cream for the fridge but rarely used it . Once a good routine is established it was manageable. 
One aspect not to get caught out with is the sun . She used Altruists suntan lotion . Available on Amazon and it’s designed by a dermatologist. We all continue to use it . Really easy to apply . She sometimes used their body and face cream and tolerated it well but the give you a selection . Aveeno was one of them .

Some mouth ulcers and again a mouth wash she did not find helpful so the Gp gave her a rolls Royce one that was brill .

I think it attacks the protein on the surface of the tumour , which also happens to be on your skin hence one of the prominent areas for side effects . Nail beds were bothersome too but she was out and about throughout this . It was not debilitating for her and the best part . It did a fantastic job on its own . Shrank everything right back .

It is given on a two weekly cycle which was a bit less convenient than three but needs must .

Thats what I can remember. I keep trying to find a link to a page I found that gave the order of the side effects as it was pretty accurate. I will have another look.

All the very best , and here’s to significant shrinkage .

The unknown aspects are frustrating!!

Take care ,

Court 

Forgot another one is the magnesium. It knocked it off . Lots of dark chocolate. I ended up making my own breakfast cereal with every magnesium rich seed etc I could find . It was just easier than spending the day trying to add it . Waitrose does a base mixture then the dried fruit was added at the end .

Court 

Thanks Court. I'm a software engineer so staying out of the sun is the norm for me :-)

I'm planning on trying to isolate as much as I can once it starts to reduce the chances for infection. It'll be like being on covid lock down again.

The upside of having to wait for it to start is it gives me time to get some stuff in order like wills and power of attorney.

I've not really thought about diet. I guess I should start thinking about it

Love it . 
Needing to redo my own will and get a POA sorted . It’s not till you see it in action  you realise how important it is .

Sounds as though you are methodical though and I do think that helped my mum get on top of the side effect management . 

Thankfully the images that are floating around on the web were absolutely nothing like what she experienced with the rash . Her own oncologist actually said she has never seen anyone as bad as the images . 

Take care ,

Court