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17,535 Views 26 Replies Last post: May 7, 2012 6:13 AM by expat99 RSS 1 2 Previous Next
expat99 285 posts since
Dec 19, 2010
Currently Being Moderated

Jun 20, 2011 10:59 AM

Anyone have experience of FOLFIRI +/- Cetuximab?

My husband will be on a new regimen in a couple of months, FOLFIRI plus Cetuximab (Erbitux).  I know everyone's different but just wondered about side effects.  My husband has stage IV colon cancer (mets to liver) and has been on chemo since February 2010 and managed to work through Fluoruracil/Oxalyplatin/Avastin for about 6 months, and then since October he's carried on working while on oral Capecitabine + 3 weekly Avastin. Sometimes I think he gets almost as much health benefit out of working as he does out of the medications - it keeps him active, gives some purpose, means he meets colleagues etc.  I suspect that managing to work as long as he has is fairly exceptional; and am wondering whether he needs to be prepared for a change of rhythm.

 

Expat

chunkymonkey 164 posts since
Feb 4, 2011
Currently Being Moderated
1. Jun 24, 2011 9:42 AM in response to: expat99
Re: Anyone have experience of FOLFIRI +/- Cetuximab?

Hi Expat

 

I admire your husband being able to work through his chemo, what work does he do,  I feel such a failure I tried to work inbetween chemo sessions, but I work in a hospital and picked up some infection which put me into itu, so have been advised not to work, I to  have bowel cancer with liver mets but I am not suitable for the cetuximab,  So I wish him and you all the best with it please let me know how it goes,  I have just started 2nd line chemo hoping this will shrink the dam tumours in liver...

 

Good luck o you both

 

Stay positive xx

Kettlewitch 64 posts since
Nov 10, 2011
Currently Being Moderated
4. Nov 29, 2011 9:45 PM in response to: expat99
Re: Anyone have experience of FOLFIRI +/- Cetuximab?

I'm on this regimen of drugs currently. Cetuximab was turned down by the pct but I got it through the national drugs fund with support from my oncologist, there seems to be a lot of people in the royal Surrey Guildford receiving it. I saw your other post regarding Side effects from cetuximab but I've been quite fortunate and all I really get from it is small bleeding spots up my nose although have seen people with a fairly extensive rash. I have struggled a bit with the treatment but am also managing to work with the support of my employers. I'm averaging about 3 days a week around treatment. Despite several infections mainly around my bile duct which has meant most treatments have been delayed, my liver mets have been stable since July when I started.

Kettlewitch 64 posts since
Nov 10, 2011
Currently Being Moderated
7. Jan 22, 2012 12:01 PM in response to: expat99
Re: Anyone have experience of FOLFIRI +/- Cetuximab?

Hi expat

 

I'm still on it and the skin rash has been fairly minimal although I have seen a couple of people, both men actually, with a bad facial rash. I know there was one young guy who had treatments delayed because it got so bad. When I've had cetuximab only weeks I've had no side effects at all so you're right, it is a lottery. I don't think the jaundice is related to the drugs, it's bile ducts that have become narrowed by small tumours pressing on them and inflammation of the liver. Ive had 3 bouts of biliary sepsis which have caused infections which then closes the ducts and stops the bile from flowing. It's a worry because they have said it could happen again and again and I just have to look out for the symptoms but as each bout is landing me in hospitalnfor over a week it's seriously impacting on my life. I'm getting to the point where I'm scared to look in the mirror. I have 4 more cycles of chemo and cetuximab to go and then should be moved onto maintenance and the treatments are keeping everything stable but don't appear to be shrinking anything so I guess I've just got to keep plodding on. I hope your husbands rash clears up as I would imagine it's very uncomfortable. I'm still having massive problems with head sweats which is getting really embarrassing especially as I'm going back to work tomorrow. It happened loads yesterday and I literally looks like  I've just got out of the shower with water dripping down my face and neck. gonna see if my gp can prescribe anything or I'm going to have to shave my head and cover it in anti perspirant!

Kettlewitch 64 posts since
Nov 10, 2011
Currently Being Moderated
9. Jan 23, 2012 1:05 PM in response to: expat99
Re: Anyone have experience of FOLFIRI +/- Cetuximab?

Not sure whats causing the head sweats and is it could be one of many things i guess ill never know. Going to see my GP on Friday to see if thers anything that can be prescribed apart from a big towelling hat. I used to have cetux every week but they have just changed it to a double dose fortnightly which i think was being done in other places already so I expect your husband gets the same dose but fortnightly rather than weekly. My skin has peeled a couple of times on my hands and feet but only the top layer - I saw a fellow patient last week and hers has suddenly started coming off in chunks 4 months after starting the drug. My fingers split around the nails last time and no, I didnt successfully find any decent plasters so I just got Andy to wash up! Im due for another dose of 5FU and cetux next week if my liver has recovered from its latest misbehaviour but they have taken the ironitecan out as im not strong enough. Cant say Im not pleased about that as its the ironitecan that makes me feel rough. Try the Aveeno cream if you havent already, it sorted out my one very sore arm really well (not sure why it was just the one arm)

MorrisMinor 8 posts since
Feb 8, 2012
Currently Being Moderated
11. Feb 8, 2012 2:27 PM in response to: expat99
Re: Anyone have experience of FOLFIRI +/- Cetuximab?

Just read this thread today for the first time.  In October 2011 my wife was diagnosed with bowel cancer and metas in liver(too many), one in lung and one in a kidney and has been receiving folfiri on a weekly basis since then.  The primary tumour is dramatically smaller now, the one in the kidney is gone, the mets in the liver have reduced in number and size and the one in the lung is pretty much unchanged.  She has tolerated the folfiri regime really without any side effects.

 

Today she had her first scheduled infusion of cetuximab, the oncologist broke off with only a third infused because of her allergic reaction to the infusion.  Red blotches, itching, feeling cold and generally like a piece of #$%^.

 

She's going tomorrow again where they want to give her the rest - hopefully she takes this OK.  From the two people writing in the thread there does appear to be pretty wide differences to the reaction.  Be interesting to see how things progress.

 

Like Expat99 we live outside the UK (Germany in our case) - but I am surprised that it's not always offered in the UK as I see that Royal Marsden is one of the champions of the treatment.

MorrisMinor 8 posts since
Feb 8, 2012
Currently Being Moderated
13. Feb 9, 2012 6:30 PM in response to: expat99
Re: Anyone have experience of FOLFIRI +/- Cetuximab?

She went back today and got an astihistamine and cortisone injection and then 30 minutes later the rest of the cetoxumab went in over the next two hours and she had no reaction to it at all - so it looks like the antihistamine did the trick.  We just have to keep our fingers crossed for the next couple of months and hope that her liver becomes operable.  SO it looks like she´ll be going back weekly now for the infusion.  In Germany they only authorise it for stage 4 patients who have the positive immunolgy tests like my wife.  Cost per infusion is about €2000.  So it´s certainly not cheap.

 

Paul

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