Stage 4 bowel cancer

Lee1974

Cetuximab rash getting me down

Well how are we all folks?

I don't post that often on here and suppose I'm more selfish in just posting queries when I want to know something. So apologies for that.

I'm 18 months in from a stage 4 diagnosis with peritoneal mets and some of the blighter is around my small intestine, which makes me inoperable (Christie and Basingstoke have rejected me for HIPEC).

I'm leading a pretty fantastic life with my wife and for the most part, I even forget I have this thing called cancer. Attending for treatment is a non-event and has just become a way of life.

I'm on maintenance chemo of Cetuximab and Capecetabine(sp) which I have every 2 weeks and am 32 cycles in.

But i am starting to struggle with the side effects of cetuximab. It is really the only side effect I experience, namely rash and pimples/pustules.

This covers my legs and abdomen and face. They are a bit painful especially on the face. Luckily I sport some facial growth which hides the visual spectacle, but they hurt. even splashing water on you face hurts around my eyebrows and jaw/cheeks where the rash and pimples lurk. The urge to pick is high also.

I'm trying to avoid slapping steroid based creams on as I have had a bit of a lifetime of this with a background history of eczema/psoriasis and find this just thins the skin down so much that if I do ever scratch I just end up bleeding everywhere.

Maybe there is no miracle solution and I feel better just having a moan about it :)

When I have a cycle of treatment my skin clears up lovely and is great for about 5 days, but in the 2nd week (where I am now) it all kicks off and I get a bit down with it.

Anyone got any experiences to trade in this dept?

Have recently started to use essential oils with a little benefit and certainly my psoriasis is behaving very well, but the symptoms from the use of the cetuximab seem more pesky.

Thanks for reading my waffle and moan.

Lee :x:

El Ivan

Hiya @Lee1974 I got Cetuximab rash really bad but I was prescribed antibiotics and it cleared it up a treat mate. Use to get them in the nose and ears, looked a right Bonny bugger! 🙄. Have a word with your onc and get them to sort you out. You shouldn’t have to put up with it matey. 😃👍

Clancy

Hi @Lee1974, I was on Panitumumab, a while ago and the Christie prescribed doxycycline for the rash which certainly helped. And I was very naughty, I used to pop the pimples with a needle, sterile of course, which was my only pleasure. Next time you see your oncologist or nurse surely you shouldn't be suffering pain.:x::x:

John2628

Hello @Lee1974 I also suffered from the Cetuximab rash. As @El Ivan said antibiotics my GP prescribed did the trick. The makers of Cetuximab also make a cream which is supposed to help with the rash but I can’t remember it’s name for the life of me, anyway it didn’t do much for me. I feel for you it is a wretched side effect.

Baxter2

Hi @Lee1974

I agree with the others in that Doxycycline and a tiny drop of hydrocortisone 1% cream works well for me and my rash. The sun definitely makes it worse in my opinion. I also use dermal liquid to wash my face and Pliazon cream to moisturise it as I get dry scaly scabby bits if I don't! I get all of this on prescription from my GP.

I do think the rash improves over time or it certainly has with me. I'm now on 44th cycle of Folfiri and Cetuximab (with a six month break for surgery)

Good luck!

K💜💚💛❤️💙

Polly 1

@John2628 you may be thinking of Pliazon?? My husband (19 Folfiri/Cetux so far) uses it and although when he first uses it his face is very red he thinks it all helps along with Vaseline, baby oil, Aveeno, Nivea etc. He was told to use Pliazon to wash his face with as well.

Polly 1

@Baxter2 everytime we ask at the unit about getting anything like Aveeno, Dermal etc on prescription we are told he can only have the Pliazon which 'should be enough'

Polly 1

@Lee1974 my husband definately agrees with you as his skin is getting him down. Just after chemo his skin calms down (and he can have a shave!) but in the second week it flares up again. Last cycle he dropped the Cetux to try and settle his face down but it still played up.

His cheeks go all 'bobbly' with spots starting to appear and he quickly puts Zindaclin (Clindamycin) from the Oncologist on them which stops them developing into anything too nasty.

The spots/rash started on his neck for the first time this cycle but has cleared up now - cycle 20 due tomorrow.

He does get horrible areas around his eyes and mouth - like cradle cap. It goes hard and scaley and makes the skin underneath bleed if it gets scratched off. He softens it with Vaseline etc then rubs a clean flannel downwards over it to carefully remove it if he can.

He says his face feels prickly and painful when his beard starts to regrow.

Baxter2

Hi @Polly 1

I get the crusty stuff too! It's worse at certain times of the fortnight. Pretty yucky looking but Pliazon softens it and like your hubby, I can gently wash it off with a clean flannel and dermal liquid wash.

I just asked my GP to prescribe what I wanted/ needed and she was very happy to do so. Might be worth you just requesting via the online prescription request or a quick telephone consultation. I've only had to see my GP 3 times over the first year of diagnosis and there rest is over the phone which suits me fine.

K💜💚💛❤️💙

GD62

Hello @Lee1974 Sorry to read that you were turned down for CRS/HIPEC, but at least you are able to have immunotherapies. It's all swings and roundabouts with this condition, as I got CRS/HIPEC but can't have immunotherapies.

Positive healing and good luck :)

Caraeliz24

@Lee1974 I was given doxycycline as well, worked a treat for me.

Baxter2

@Lee1974

And Doxycycline is a must for me too!

K💚💛💜💙❤️

Polly 1

Really strange as I said in another post C was told by the ward Dr last week at chemo NOT to take them all the time and to stop. He had taken 14 since the previous chemo when they told him to take them all the time and put them on repeat at the GP.

In the middle of his 'bad days' now following last Wednesday's chemo and his face is hurting and red again, hopefully by this Wednesday it should start calming down - fingers crossed 🤞

Sounds like you @Lee1974 ? The days following chemo his skin although slightly pink is very smooth and clear and otherwise 'normal'

jandals

Hi my partner had/has the same and had to stop his second cetuximab treatment as it was so severe (mostly face and back then) he is now permanently on antibiotics (doxycycline) which I worry aren't great but he seems to have mostly got rid of the face rash though his skin around his eyes is now sore... Is that common?

Recently he has also developed very sore hands. The cancer seems to have changed the shape of his nails and he now is in.pain with the cuts all around the tips/, edges of his nails that bleed and are sore when he touches anything. He has a cream and wears gloves at night and is really careful about infection.

Can anyone recommend a good treatment for this? The oncologist said it would only get worse as it is a side effect and cumulative. He is on round 8 folfori/cetuximab think it's going to be reviewed at 12 and he had a reduction at the last review so we want to keep going!!

jandals

I'm so sorry lee I started a post trying to be be supportive by saying the antibiotics could be worth it as they really helped with the rash but then my anxiety about my partners other side effects which are nothing to do with your post took over and I went on a rant!! Hope you find what works for you, the good news as they said is that it's an indicator it is working... All the very best to you :x: