Cetuximab rash

Hi ,

Sorry you are having to cope with that . I know some previous patients got their oncologist to refer them to a dermatologist and they were able to get it under control . 

Take care,

Court 

Hi Sash

Sorry you're experiencing the awfulness of the scalp itch, it absolutely drove me up the wall as well.

I tried everything like you and nothing seemed to stop it until treatment itself ended and then it was over very quickly. Plus my hair grew thicker than ever so there was a plus side.

I tended to rub e45 or pliazon cream into my scalp and hair then sleep with a hat on, and use the absolutely most gentle shampoo and warm water only for washing hair to try and minimise drying out the skin. Very hard though as most of the time a hot shower and scratch is all you want. I think meditation is useful to try and stop yourself focusing on it!

You have my utmost sympathy.

Is it vital to shampoo at this point?  My oh stopped washing hair, yeuchy for a week or so and then fine, rash improved and itching lessened.  Just a thought.

Hi,

I had 9 cycles of cetuximab. A week before and during this I took an antibiotic Doxycyleine which really helped.

The cetuximab really worked on my secondary tumours in my liver.

Best of luck and keep going. 

Pete

Thank you everybody for your replies.  I will speak to my consultant and see what he says,  perhaps get a referral to dermatologist as I will be on Chemo 'long term', what ever that means, and it would be nice to get some relief from the tightness and soreness. 

My best wishes to all of you.

Sash

Hi Sash,

I am also on cetuximab and my face feels like it wants to fall off!  I have dry flaky skin and often red rashes.  It also affects my eyelids - the part under my eyebrows.  Antihistamine helps with the itchyness and rashes but I've yet to find any cream to truly help my face.  I've been through the chemical ones and tried natural ones.  Calendular cream helps with itches and redness though. 

I also have splitting skin in fingertips - my 'stigmatas' as I call them - I am sure the splits expand in front of my eyes at times.

I've learnt over time that this has a cycle...not matching my two week chemo cycle.  Things start to heal then the process starts again every 7 - 10 days.  

I'm pleased to say it's not affecting other parts of my body.  I was getting split heels and toes but that seems to have stopped.  My consultant's registrar has suggested some steroids to help my face...I'm thinking about it.  I must re-read the post that mentions anti-biotics (wish I could scroll up and see all posts whilst typing this).

I am on the Folfiri regime now...with the cetaximab (which is the cause of the skin condition) with 80% 5FU on a picc line pump over 46 hrs..  I can't tolerate a full 5FU dose - it's laid me up in hospital - twice.   2nd visit was a 2 week stay to get me well and a 5 week gap between chemo.

Lynne x

Hello Lynne,

Sorry I haven't replied to you sooner.  I hope you are doing well.

The Cetuximab rash is not pleasant, is it?!!  My doze has been reduced to 60% which has made a difference but I still get outbreaks.  I'm still on Doxycycline (antibiotics) but I think that primarily stops infections rather than controlling the rash.  I have been using Dermol cream on my face, I don't know if that makes any difference but I do find that using the moisturises nursing and medical staff recommend, like Diprobase, Cetraben etc is too greasy and makes my skin greasier and that's usually when my rash is at it's worse.

I have been precribed fucibet cream, a mild steroid cream which I use on my face when the rash is at its worse, usually 7-10 days into each cycle. But I only use if for about 3 days at a time.  I have also been given steroid scalp solution (Betacap) which helps with the soreness and itchiness of the scalp which I have used twice and it has been very helpful.  My consultant's registrar also prescribed me steroids to take if I need to, for 3 days at a time, but as yet I haven't taken them as I don't really want to take more steroids if I don't have to.  The ones they give me with the chemo are enough!

I am also on the 5FU pump for 46hrs, (it was my birthday yesterday and my 11yr old daughter bought me a very colourful bum bag to keep the pump in, best present I have received!!)  connected via port in my chest. Life is so much better with a port!  I had picc lines before (3) and they kept failing and not working properly. Had to have 4 cycles as inpatient i hospital to receive chemo via cannula and that was an awful experience. I am so grateful for my port.  I'm also on Oxiloplatin but consultant said he might stop that for a while and see how we get on as I haven't had any new growths and original tumours are dead. 

In 13 days it will be a year since I started chemo. I have had 19 cycles so far and many more to come (Stage 4 bowel cancer). It is a bit wearing having chemo every 2 weeks. By the time you recover from one cycle you are mentally preparing for the next.  But I won't complain. Life could be so much worse. And all this has just made me appreciate the good days so much more and just enjoy living in the present and enjoying the life I have.

Take care 

Sash x

Hi Sash,

Thanks for your reply and pls don't be sorry for taking a while!  I can be the same..we still have busy lives and tbh, I go for spates not looking on here.  I take my hat off to the peeps who constantly offer help and advice.  I have to be in the right frame of mind to peek into the forum, as great as it is, it's overload for me at times.

Since I wrote my last post my chemo was delayed for a week and my face healed up :)  It was lovely to put some makeup on without looking as though I was covering fish gills (which is how I now explain what my face looks like when peeling).  I've had two lots since then and it's been trying to break out but not as bad as it was (give it time after my next chemo on 10th....)

Great news about your bum bag.  I had a very pretty bag given to me at the hospital a few months ago when I had a different sort of pump put on.  I told them I was keeping it but it doesn't tie around the waist so not very safe for my chemo baby bottle !

When I was in the chemo ward last I saw someone with a port on her chest..it was covered by just a little sticky plaster I said I wanted one!!  She'd had a PICC line for a year.  She had to come into the ward to be disconnected from her pump as the district nurses couldn't do it.  I guess that's the port you've got.  My PICC line fails in that they can't get blood out, despite having the treatment that sits in the PICC line for an hour to clear it, it only gave blood once afterwards so now I go up to the hospital for blood tests as the poor district nurses just unsuccessfully prod me in weird places on hands and arms.  The phlebotomist at the blood unit just goes for it.  Luckily I'm a 15 minute walk from hospital so quite easy.  

I get results of recent CT scan on Wednesday and that will I guess determine the road going forward.. My (grown up) children will be with me.

Your story and positiveness makes me also feel so much better.  I started chemo last Oct , this week will be my 12th session and 6th of this recipe.   I also had stage 4 bowel cancer, 27 nodes removed, 6 suspect and it's these that have put me on my current chemo recipe. 

I completely understand the 2 week mental preparation and feel the same, I don't complain, life could be worse. Enjoy the good days and the family. .  For  me side effect wise - apart from the steroid high for 3 days where I don't sleep for 36 hrs - all I really get is some unpleasant gas and wind from the 5FU which can happen anytime and I still can't identify what sets it off.  Buscopan helps though!    As long as they control that thing inside me,  which is what they said they should be able to do, I'll be happy.  I have a second grandson coming into the world on in 2/3 weeks .  It's going to be a nice sunny day today  I will enjoy being very lazy and swinging on my hammock reading a book.  Lazy?

Tomorrow will be walk to hospital - blood test day, grandson looking after in the afternoon. Wed hospital appt.  Thurs chemo day (6.5 hr job lot) and here we go again!!

Take care

Lynne x

My OH is on chemo and his poor face and neck are awful red raw and so sore.  The doctor gave him Plazon cream. Doesn’t really do anything to help.  Just don’t know what else to do.