Cancer Chat online community
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.
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
Hi, we have been travelling so I was not checking the internet much... my husband is a university lecturer and has manged the teching and preparation but am worried that next academic year will be too much. He's determined to try and keep working but having looked up the side effects of the new treatment am not so sure myself (he doesn't want to find out in advance). Good luck xx
I was wondering why I had had no replies. And then I read this (dated Septmber 2011):
Three targeted therapies — bevacizumab (Avastin), cetuximab (Erbitux), and panitumumab (Vectibix, Amgen) — have been rejected in the United Kingdom for use in patients with metastatic colorectal cancer that has progressed after first-line therapy.
Cost seems to be the major consideration. I know there isn't a bottomless purse of funds for the NHS but it does seem tough; I know my husband is only one person, he isn't a whole clinical trial, but while he was on expensive Avastin he put in a year and a half of university teaching, and now he's started expensive Erbitux and is still working, still productive; it's not just his quality of life, it's what he does for his students too.
Part of me feels guilty because where we live our health insurance is (for the moment) paying for this treatment which is effective for some. Part of me is worried: we would like to go back to the UK for good soon, but it looks as if there would be a big change in availability of treatments. Don't get me wrong - I think very highly of the NHS, (if I were in the UK I would be there campaigning against the cuts....) I know they have to make difficult decisions. But the decision we're going to have to make will be between continuing treatment away from home (we only see our children twice a year), or going home and treatment being way more limited with all the implications of that.
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.
thanks for getting back to me. My husband started on fortnightly Cetuximab + Folfiri in September. He seems to be at the more severe end of Cetuximab side-effects - the rash is all over his face, scalp, upper arms and upper torso; but is nevertheless managing to keep working, tells people that the rash is an allergy to sunshine (well it is exacerbated by sunshine) and hopes people notice the smile rather than the more unpleasant aspects of his face.
good luck with your treatment - hope the good response continues - and also interested to hear of someone else who's able to (and wanting to) keep working. I know it makes a lot of differnce to self esteem!
I saw your other post about turning yellow (!) and wondered if you were still doing ok with the Erbitux/Cetuximab? My husband had to have a break from it as his rash was so alarming, they'll review the situation this week. He last had it in early December; by mid Dec at the next appointment he looked so alarming the oncologist took photos, I suspect he'll pop them up on screen at a research conference... scary. This whole cancer business seems like a total lottery, I mean I know there are risk factors but they don't explain everything, and then there's a second lottery for what side effects you get from the treatment.
All best, 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!
Are the head-sweats a side effect of one of the drugs then? Sounds a bit miserable especially in winter, don't get chilled. Unless you're trying to deliberately chill out, that is.
I suspect the regimen is different from yours, he has Cetuximab & Irinotecan every 2 weeks and takes oral Capecitabine in between - although the doctors seem to disagree as to whether that should be every day or one week on, one week off. There are no Cetuximab only weeks, and I suspect if it were suggested that he have Cetuximab every week (do you have to have IV every week?) then he'd say 'no WAY!' Yes, I am trying to support a patient who is verging on having a phobia about hospitals.... wasn't so bad when he was on maintenance therapy as the appointments were every 3 or 4 weeks but going back to fortnightly appointments was a bit of a struggle.
As for my husband's rash - it has more or less cleared up (no Cetuximab sinces early December) but he still has big problems with fingernails and toenails. If you know of a brand of plasters you can put over fingernails which will actually stay in place when you wash your hands please tell me. I couldn't believe it when i heard myself say 'you mustn't do any more washing up or food preparation while your fingers are like that.' For now, we're just aiting to hear what they will say at this week's appointment.
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)
We have enough tubes of cream to start a pedicure/manicure business; the one that works best is called Du-it and it's an Australian import. Good for the skin generally, cracked skin seems to heal very quickly, but doesn't really help with the nail problem. I suspect that it's the Fluorouracil/Capecitabine that makes the skin peel and then Cetuximab has a go at the nails.
Just wonder what treatment he'll get this week. After the facial rash has finally healed at last (though he's still a funny colour) it seems a bit wrong to start throwing Cetuximab at his system again.
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.
My husband had a very strong reaction the first time he had Erbitux - immediately after the infusion I mean - but on subsequent occasions was OK. They give some sort of antihistamine before the IV erbitux. After a gap to get over the rash he started back on Erbitux 2 weeks ago and is having it again today but then the plan is to switch to Vectibix to see if the rash isn't as bad.
My understanding is that some of these biological treatments such as Avastin and Erbitux are not available as standard in the UK, or are approved for first line but not second line (etc) treatment. We live in in a place where all the treatments seem to be available whatever the cost. unfortunately patient *care* sometimes leaves something to be desired.
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.
Just wondered if they have already given your wife anything to limit the side effects? I mean the skin problems. My husdand has had one of the worst rashes the doctors have ever seen but beginning with antibiotics & misc creams limits the damage. He just had a break from it for a few weeks, but carried on with the antibiotics prescribed when the rash was at its worst - and now although the rash has come back it isn't as bad as it was after 2 weeks the first time around. However they plan to switch to Panitumumab next time to see if it works as well with fewer side effects. Crossing all appendages!