Bowel cancer treatment and side effects

jamesalexgray

If a type of chemo doesn't work why not try another mix?

David's just had a consultation and not willing to proceed with surgery as the chemo doesn't seem to have had enough of an impact. Bloods are good. But from scans they aren't seeing enough of a reduction in the tumours. We've been referred back to the oncologist & told he's going o have another 6 blasts of the same chemo (5FU, irinotecan plus cetuximab.) But we've been told it's a slim chance.
After leaving I've been reading this forum & noticed a lot of people have oxaliplatin.
These are questions for the oncologist but just asking here too. Why if something hasn't shown a great result would you continue with the same? Would it be wise to ask for a new mix? Thanks all :x:

Bear G

Hi @jamesalexgray
Welcome to the forum, I hope you find this a friendly and supportive place.
I’m sorry to hear David’s response to his current chemo hasn’t been as good as hoped but at least ther is a response, that’s positive.

I’d suggest asking for a consultation with the oncologist to chat through their rationale, it may be the surgeon thinks it’s a ‘slim chance’ but the oncologist may feel more optimistic.

What you suggest is actually routine practice, that if one chemo hasn’t worked then they’d try another. There may be some reason why they don’t want to try oxaliplatin on David but please be assured there are other options too.

Big hugs
Bear
:x::x:

jamesalexgray

Thanks Bear, of course you don't think of these things when you're in the room with them. It's only when you're awake at 3am! We're in again next week & I'll be a bit better prepared :x:

Elisa76

@jamesalexgray
It depends what the oncologist/surgeon means by “it works”.
The scientific sources consider a reaponse either:
1- cancer stopped growing
2- partial response ( shrinkage of some sort)
3- total response
so, technically, if the cancer did not shrink but did not grow, then chemo is still working.
Usually NHS changes line of therapy only when the chemo stopped working, meaning when the cancer has grown despite chemo.

jamesalexgray

Thanks Elisa, I'll ask for a bit more clarity when we're in. We got "the cancer hasn't responded as much as we'd like." But did ask and was told it hadn't increased.

Elisa76

@jamesalexgray
I never manage to ask the right questions when i see the oncologist nd even if ido, i usually never get a direct answer.
It is so hard!
Good luck.

Lawsey

Dear @jamesalexgray please ask the questions for David and yours sake.
And remember we are here for you both
:x::x::x:

jamesalexgray

Thanks Lawsey - up until now I've let David take charge of this and he finds the forums difficult reading. However I've only found hope, positivity and some great advice. I just have to do my research at work so as not get shouted at!

Marcus

I am no expert, you only learn what the oncologist says and even in the same clinic it is different. But if it helps I have large tumour in colon, tumours in liver and small ones in lungs. I was on 11 rounds of 5FU. This reduced main tumour. Then I was switched to FOLFOX (Oxiplatin) (Haven't got info sheets in front of me) Only ended up with 4 of those as not working. Just started Longsurf tablets which apparently can be taken longer.

Marcus

I was the same with googling information. Taken me a year to start looking at internet. Up to now had enough info to be dealing with and just wanted to get on and deal with the new normal.

Marcus
Quote from @Elisa76:
@jamesalexgray
I never manage to ask the right questions when i see the oncologist nd even if ido, i usually never get a direct answer.
It is so hard!
Good luck.

I used to have a notebook which I or my partner would write down what they said and have a list of questions ready to ask.

DianeS

Hi @jamesalexgray welcome to our forum. Sorry to hear that’s Davids chemo hasn’t worked as well as you both would have hoped. There isn’t really any set rules for a bowel cancer diagnosis as every single persons cancer is individual and unique to them. However professional opinions do vary, and meetings are difficult as we only pick up on various things and then go away and wish we had asked other questions. It would be worth making a list for your next meeting and if you come away still not sure or feeling unhappy you can get a second opinion. I really hope you manage to discuss the options and find a suitable treatment. Please beware of Google there are so many sites with false or out of date information. Thinking of you both Diane :x::x::x::x: