Possible chemo change from FOLFOX to FOLFIRI

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I was diagnosed with bowel cancer that had spread to my liver in Nov. Since then I have had 12 rounds of FOLFOX which has been successful at reducing the cancer in my liver but towards the end of the 12 rounds I started to suffer with numbness in my fingers but no other major side effects.

I have had a 8 week break from the chemo now to assess if there were any other options available to me (surgery or ablation) but only more chemo is available at the min. During the break from chemo the numbness has also started in my toes now and so my team are recommending a change of my chemo from FOLFOX to FOLFIRI. Ive been told that this should help reduce the chances of the numbness becoming permanent but the side effects of FOLFIRI include a 1 in 3 chance of losing my hair which I am worried about.

Unfortunately I will soon need to make a decision about what to do and Im wondering if anyone has any experience of switching between the 2 chemos or any experience of being on FOLFIRI.

Kareno62 over 2 years ago

Hi Neffnie. If you type folfiri in the search box at the top of the page then you can see previous posts about it. Helen had the cold cap during her treatment and only had slight hair loss so you could try that?

The ‘ox’ part of folfox is the oxaliplatin which causes the numbness and tingling in the fingers and toes. It can be become quite severe. I started with tingling in my feet while on Capox and didn’t worry too much about it but the nurse saw that they were red and they stopped the oxaliplatin part. 5 years on my feet feel like the skin is permanently tight and hot - a bit like sunburn. It’s annoying more than anything else but I’ve read about people struggling to fasten buttons with it in their fingers.

Hope the treatment continues to reduce the liver mets

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

court over 2 years ago

Hi and welcome Neffnie

I think Mizzle88 might be using that combination and could maybe address the hair thinning aspect . It’s certainly commonly used in bowel cancer in a stage 4 setting and seems to be the one they use for more maintenance chemo . If you look at some of the profiles on bowel cancer U.K. you will literally see people on their 100 th cycle over five and six years .
That’s great your chemo responsive and got a good result . I think you are made of steel getting to 12 cycles . My mum only ever could do six at a time . The neuropathy has settled with time or she has gotten used to it . I am not sure which .

But have a look on the other forum and see how they are using it if time is tight in making a decision.

You are doing incredibly well .

It took two years for my mum to get to her bigger liver resection so hold on tight .

Take care ,

Court

Helpline Number 0808 808 0000

Mizzle88 over 2 years ago

hi there - I’m about to start round 4 and can say that my hair is thinning but I still have loads. I’ve been told it doesn’t all fall out but It is scary that’s for sure. I too have it in my liver and lymph nodes. Control and contain for me. I’m happy on the treatment and do think it’s working!

sometimes we have to put our faith in the teams for doing right by is. Sending big hugs xx