Helpline
Speak to a member of our Information Support Team
(Call-back service – 24h answer machine)

020 8973 0011

or email nurse@beatingbowelcancer.org

PLEASE NOTE THAT THE FORUM WILL CHANGE TO THE NEW CHARITY NAME, LOGO AND COLOURS FROM FIRST AUGUST 2018

Beating Bowel Cancer Community

Stage 4 bowel cancer

Jacey Connell 74

Folriri versus Folfox

Hi All

I had 20 cycles of Folriri but no longer effective. Starting Tuesday on Folfox. Can stage 4ers confirm
If they had good results ? Also I understand about the cold but I was told by the unit not to drink a cold drink even if room
Tempature and only eat hot food? Is this correct? Thank you for any advice :x::x:

Jaap

Hi @Jacey Connell 74.
After 6 cycles of folfox on its own my mother's largest liver met shrank from 2.9cm x 2.4cm to 1.4cm x 1cm. Her enlarged distant lymph nodes returned to the normal range. Her CEA dropped from 70 to 4.5.
It seems like a better response she has had with folfox than the folfiri, and with less side effects so far.
She is on to cycle 9 of folfox on Friday and hopefully it is still having some effect on the mets when she has her next scan in February.
Hope you get your first cycle next week once the infection clears up.

Jacey Connell 74

@Jaap Thank you. Really encouraging from your mums results. Much appreciated :x::x::x:

Lizalou

Hope your ear infection is clearing up @Jacey Connell 74 and that you are all ready for chemo soon. :x::x:

louise2016

Hi@Jacey Connell 74

Hope your ear infection is clearing for you.

I had 10 rounds of Folfox. I did very well on it. Neuropathy did intensify but i coped. I wore gloves in the early rounds for tingly fingers when going in fridge and stayed away from very cold drinks. Cleaned my teeth in warm water. I only had it in my fingers till round 10 then after this it started in my feet. I had tingling in lips also but only now and then.

I have had a break and due to start back on this regime again next Tuesday. I had very good shrinkage of rectal tumour and lung mets. My liver became totaly clear and they told me it had gone into remission.

I hope you will do well and have good results too

Love Louise xxx

.

Jacey Connell 74

@louise2016 Thank you. Did you have much sickness? I was really bad on Folriri but I had 20 cycles. @Lizalou Thank you. Ear infection better but still got a lump. Seeing Unit tomorrow see what they say. Picc line was put back in so already for next week :x::x:

Baxter2

Glad your ear has improved @Jacey Connell 74 and hoping you’re getting all geared up to kick cancers butt good and hard with the new chemo next week!

Lots of love,

K ????❤️

Regalo

@Jacey Connell 74
Hi there. Quick query.....did you have sickness from cycle 1 on Folfiri? I have just had cycle 4 with no sickness touch wood but wondered if it might happen!

Quote from @Jacey Connell 74:
@louise2016 Thank you. Did you have much sickness? I was really bad on Folriri but I had 20 cycles. @Lizalou Thank you. Ear infection better but still got a lump. Seeing Unit tomorrow see what they say. Picc line was put back in so already for next week

Bear G

Hi @Regalo
I had 12 cycles of folfiri a couple of years back with nothing more than mild nausea and no sickness.
We are all different in how we respond to these combinations, the best advice is to take all the support meds as advised (this includes the steroids which are good for reducing nausea).
If you do get problems do let your team know as there will be other support meds they can try.
The other advice is to not focus on what side effects may happen, rather focus on all the good things your chemo is doing to help you beat the cancer. That worked for me!
Big hugs
Bear
:x::x:

Tiffany

@Jacey Connell 74. Hiya. Firstly please don't apologise about "going on about cancer" - that is exactly what we are here for. You are going through the most terrible time so you have every right to have a moan and ask questions.

My hubby managed 12 rounds of FolFox wth Avastin with no reductions in treatment. He did find the side effects easy to manage in the first few rounds. Yes be careful of cold, room temp is OK but got to be honest the day of the treatment and a good few days after he didn't fancy much to eat at all. He did suffer a bit from sores in his mouth and the neuropathy got worse with every round. By round 9 his neuropathy was pretty awful BUT he had an 80% reduction of the cancer and then after moving to 5FU for six months he was told there was no evidence of disease.

I guess that what I am trying to say is that the FolFox was hard but manageable. The results for Mike were great.

I'm so sorry that you have to go through of all this again and that Folfiri is no longer working for you.

Lots of love, Tiffany :x::x:

Baxter2

Hi @Regalo

I’ve just had Cycle 33 or 34 (almost lost count!) of Folfiri and Cetuximab. I have never even suffered slight nausea on this treatment but suffered with nausea all day/night with Capox. We all seem to be so different! I’m thinking if you’ve had 4 cycles with no nausea, your hopefully going to avoid it completely! Like @Bear G ......chemo is truly my friend and has got me to where I am today without a doubt! Just as well since I’ll be on it indefinitely or on ‘maintenance’ which I prefer the sound of.

Good luck with your continued treatment!

Best wishes,

K ????❤️

louise2016

@Jacey Connell 74 i had no sickness at all. Felt good on it, so best of luck. I have to start on folfiri now cos of some neuropothy. Hope i am ok :x::x:

Jacey Connell 74

Thank you all. Just get very nervous about side effects as I suffered with Folriri. @louise2016 everything crossed for you :x::x::x:

Baxter2

Keep a positive and open mind if you can @Jacey Connell 74. The side effects may be much more manageable this time!

Best of luck!

K????❤️

Clancy

@Jacey Connell 74, good luck with the FOLFOX, you may be one of the patients that sails through it. It is really good chemo.:x::x:

Jacey Connell 74

@Clancy @Baxter2 Thank you for your words means a lot to me. I am worrier. Still no chemo as still have ear infection so another lot of antibiotics given to me yesterday. Fingers crossed it works this time :x::x:

Wendywood

Hiya @Jacey Connell 74 I found, especially in the early days, my tormented mind was one of the biggest hurdles to overcome! For this aspect I found most helpful - reading again The Power of Now, practising Mindfulness, getting a puppy, embracing every moment as it happens, smiling at everyone I come across on this journey (and giving positive feedback where appropriate), and practising not only a 'cup half full mentality' but going one step further to a 'glass runneth over' mentality. Oh, and I always pay attention to the words of that wonderful @Bear G cos he talks sense and is so uplifting (and all the other great folk on here of course!)

Saying all that, I started my first cycle of Folfiri on Thursday....... I was concerned about side effects too, especially potential nausea and sickness. Pregnant with my daughter many many moons ago I spent months feeling sick and was definitely NOT glowing in any shape of form. This past body memory haunted me. However now when I feel a worry looming I do a reality check ' in this moment how do I feel?'. Always helps :) And everyone I talk to tells me how good anti sickness meds are these days.....

Good luck with your ear infection, sending that pesky ear of yours lots of love so you can commence chemo soon!
Wendy :x:

mchillier76

@Jacey Connell 74 sorry slow reply. No my husband has been fortunate and not felt sick on either treatment. A bit "queasy" at times and he needs to eat regularly or gets quite wobbly. But no sickness. In fact folfox has been easier, bar the cold weather thing. Hope your infection clears up soon :x::x::x:

Regalo

Thank you. X

Quote from @Baxter2:
Hi @Regalo

I’ve just had Cycle 33 or 34 (almost lost count!) of Folfiri and Cetuximab. I have never even suffered slight nausea on this treatment but suffered with nausea all day/night with Capox. We all seem to be so different! I’m thinking if you’ve had 4 cycles with no nausea, your hopefully going to avoid it completely! Like @Bear G ......chemo is truly my friend and has got me to where I am today without a doubt! Just as well since I’ll be on it indefinitely or on ‘maintenance’ which I prefer the sound of.

Good luck with your continued treatment!

Best wishes,

K ????❤️

Regalo
Sensible advice as ever...thank you @Bear G from Regalo
Hi @Regalo
I had 12 cycles of folfiri a couple of years back with nothing more than mild nausea and no sickness.
We are all different in how we respond to these combinations, the best advice is to take all the support meds as advised (this includes the steroids which are good for reducing nausea).
If you do get problems do let your team know as there will be other support meds they can try.
The other advice is to not focus on what side effects may happen, rather focus on all the good things your chemo is doing to help you beat the cancer. That worked for me!
Big hugs
Bear