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Beating Bowel Cancer Community

Bowel cancer treatment and side effects

Polly 1

Folfiri/Cetuximab problems

Anyone just on Cetuximab and 5FU? Our oncologist was talking about the possibility of dropping Irinotecan after aprox 20 treatments but I thought you had to have the full Folfiri to get NHS Cetuximab funding???

My husband is really suffering today. He has his Folfiri/Cetuximab on a Wednesday so today is his 'good' Wednesday when he usually starts to perk up but not this time.

He's not as tired as yesterday (he slept most of Sunday/Mon/Tues) but his face is really really red, painful and sore and together with a painful mouth and tender nose he's really been down in the dumps today. There's even been a few tears and that's not like him at all.

He's just had cycle 18 Folfiri/Cetuximab. Should the skin reaction get better at all?

Even Pliazon isnt helping much now and just stings. They are struggling with dressings on his PICC line as well. They have only got to touch him with Chloraprep and it reacts and stings so it's just saline now. They cut the IV3000 down to cover the smallest area they can get away with to allow Sobaderm to be used to calm down the rest.

He really is struggling this time. Hopefully tomorrow will be better - although as he keeps saying "and it all starts again next Wednesday" - it's not easy is it 

GD62

hi @Polly 1 so sorry to read cetuximab side effects and picc line problems. @Baxter2 is on this and she is probably a good person to ask. As for the picc line I tend to find that there is nurses who do it well and nurses who don't. Anyway, at home my partner tends to put on a satisfactory dressing with as little tape as possible, and two other nurses could not flush the line, just because they lack the strength and so bloody over cautious phoning the oncology help line, and make such a song and dance they don't inspire confidence and I tell them to just leave it.

Anyway hugs and positive healing :x::x::x:

Polly 1

Thanks @GD62 :x:

Polly 1

Should he be putting Clindamycin on the rash? He hasnt got individual spots anywhere just red very sore skin on his face.

When he started he got nasty spots which Clindamycin sorted out - now it's just one big area of red, sore to touch skin on his face. No spots/rash anywhere else (yet)

Jane39

Hi @Polly 1. I asked the same question recently and trying to find the answer. My oncologist suggested I may have a chemo break ( FOLFIRI) and continue Panitumumab, but like you a bit confused re funding etc .

Sorry to hear about your husband. I too am having a bad cycle with a horrid skin reaction , rash , pustules , very sore bleeding nose , face red and angry , infected sore on lip ... along with lots of toilet trips ( cycle 11). Plastered in hydrocortisone cream tonight , took an anti histamine, lots of Imodium ! Probably restart doxycycline tomorrow. Not sure Pliazon helps me either . Hope he feels better tomorrow :x:

jinnyp

Hi @Polly 1, sorry to hear that your husband is struggling at the moment.
I have had 12 cycles of FOLFOX and Cetuximab and my Oncologist has now put me on Cetuximab and 5FU as maintenance chemo which I believe will be ongoing if I am unable to have surgery - currently inoperable and waiting for opinions.
My skin has been horrible at times with the Cetux and I find that the Pliazon often stings, especially around my eyes and on the very dry sore bits. I was given doxycycline tablets soon after I started and have found that they have helped a lot. I don't use Clindamycin cream but was given 1% Hydrocortisone which I was a bit sceptical about but it is very effective and doesn't sting at all. Did you know that you can use the Pliazon with water as a face wash? I just use plain water or the baby 'Water Wipes' to clean my face. I still have flare ups from time to time but generally it is under control. I do remember how miserable it made me and still does when it is bad - I do feel for him. Has he been given anything other than Pliazon for his skin? If not it would be worth asking as there are very clear guidelines on what can be used depending on how severe the rash/symptoms are which is how I ended up with the doxycycline and Hydrocortisone.

My skin is very sensitive around my PICC line and now I have a piece of gauze underneath it and then another on top so the dressing does not stick to the skin around it or the line itself - it used to be so painful getting it off. They have tried 3 different dressings with mw, all similar but I am getting less reactions now and the skin is less sensitive around the line now. There are lots of different options for dressings and they should be trying them, it's awful for him if he is dreading every cycle.

Sorry for the long ramble - I hope things improve for him soon :x::x:

Baxter2

Hi @Polly 1 and Thanks for the tag @GD62

So, my 'beauty' routine is as follows:
Never ever use soap on skin but sensitive skin shower gel and clean flannel.
Use only dermal liquid or cream to wash face with water and go gently.
Pat dry and apply hydrocortisone 1% cream all over face and chest area (most problematic areas)
Once absorbed, apply Pilazon cream all over face, neck and chest.
Apply q.v. cream over rest of body including feet.
Take 100mg Doxycycline capsule every day (I've tried without it and things flared up!)
Use 'sensitive' baby sun cream only on face. At least factor30

(I also swear by my daily dose of Mirtazepine antidepressant which I believe is crucial in helping me face whatever is thrown my way!!)

As I mentioned, my skin on face is much better than the earlier days on Cetuximab. I'm sure after about cycle 20 things settled a great deal. All the above available on prescription. I buy my own shower gel. Now don't get me started on all the other annoying Cetuximab side effects.....wonky long eyelashes and eyebrows, hairy cheeks, curly hair, scabby (and hairy) nostrils..............! 😂😂😂

Best of luck!

K💚💛💜💙❤️

Polly 1

Thanks for that @Baxter2 I'll pass that on.

C didn't want his full photo put on the public forum but this edited image shows his new beard very well - he's never had one before!

Polly 1

Thanks so much for all the info @Jane39 @jinnyp you are all stars :x::x:

Baxter2

@Polly 1

Ouch!!! That looks so red and angry! It certainly seems to be his face only as neck looks fine. Has he been exposed to the sun? Even on a dull day? I'm not sure if you could ask for a dermatologists opinion here? Why not? It's certainly worth asking. Maybe call up either GP or oncologists secretary and ask for an urgent referral?

K💚💛💜💙❤️

Polly 1

Just reading your comment about Doxycycline @Baxter2 - C had a 14 day treatment last cycle which finished last Wednesday.
The chemo centre had only given him 14 days. We asked if he should continue and they gave him another short prescription to take to the chemist. When I asked if we had to keep having prescriptions they told him to see his GP with the prescription and get them to put it on repeat. With not being well he hasnt been yet so I think I will just get the 14 day capsules so he can have them today and try and sort out repeat another time. I can't just go and ask for it on repeat without him seeing the GP.

Baxter2

I'm pretty certain you could simply request this over the phone @Polly 1 . I wouldn't expect there to be a need for a GP consultation to have it prescribed.

It's my understanding that this needs to be taken EVERY day during treatment with Cetuximab. As I said, I once tried to do without it for a week or so and my skin broke out terribly! Never again! I'm pretty sure @Sean tried without the Doxycycline too with a similar experience.

Good luck!

Karen :x::x::x:

Polly 1

Not in full sun but yes to dull/shade for short intervals without sun protection so I told him that hadnt helped!

He has sensitive factor 50 to use but was reluctant to put it on his already painful face for the short time he was outside and was inside the house sleeping most of the time - he had a red painful face even then.

Yes lack of Doxycline wont have helped then either!

Baxter2

@Polly 1

In that case, he needs a huge big cowboy type hat! I have a floppy type hat to wear in the sun or on brightest days. I really hope his skin improves soon. :x::x::x::x::x::x:

Polly 1

Hi @Baxter2 he has got a big hat like that I will have to put it out for him 😁

I took the prescription to the GP and the receptionist seemed confused about being asked to put it on repeat without a form or anything but took a photocopy and said she would pass it on to the duty Dr. I then got them from the pharmacy.

Since getting home I have checked the GP online medical records and there it is with the repeat prescriptions along with the Difflam also requested. They both say ' advised by chemo unit ' so sounds like they may have checked direct with them.

He's much better in himself today and after a nap is currently singing away preparing lunch in the kitchen 😊 His skin is calmer as well.

Thanks for your help :x::x:

Baxter2

Ahhh! That's all good to hear @Polly 1

Hopefully he'll have a better day today. Just keep slapping on his lovely big hat when he ventures out!
Oh, yeah, forgot the difflam too for the sore mouths. I get that on repeat too!

K💚💛💜💙❤️