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 

Baxter2

I do wonder if there's some infection going on @Polly 1 ? Hopefully a dermatologist will,be able to easily identify and treat the cause :x::x::x::x::x::x::x:

Polly 1

He's much better today thank goodness @Baxter2. His neck is nearly clear and his face just looks dark 'pink' nothing like it was. We even made it out to the pub for lunch today - first time he had been out since chemo last week.

Baxter2

Oh that's so good to hear @Polly 1!

Remember keep him out of the sun and make sure he has babay sensitive factor 50 on face and neck.

Hope you enjoyed your lunch!

K💛💜💙💚❤️

tonibates1

@Polly 1
Hello Polly, I have been reading your first blog about your husband and want to see if some of these tips help in any way. My hubby Steve went through the same symptoms as yours and life became unbearable with mouth ulcers, sore skin and horrendous reactions around his PICC line. His skin was almost coming off with every touch. Anyway, one wonderful tip we got given was for him to suck on ice lollies one hour before the end of each treatment. This acted like a 'cold cap ' in his mouth and he never experienced sore mouth again. We also got GEL CLAIR as part of his mouth hygiene routine. His Picc line had to be removed because his skin became so sensitive to the dressings, nothing apart from BAMBOO PLASTERS helped . We spent hours after chemo trying every dressing possible to cover his PICC, eventually he had to have it removed and was taken off the treatment for 6 months to give him a chance to recover.(resulting in losing the funding for Cetuximab). Even now when he has his pre chemo bloods taken he still comes out in a red rash when they try to put the tape on his arm. HIs face we found AVEENO cream helped loads, and you can get it on prescription too. If your read one of my messages early on, DONT GIVE HIM UDDER CREAM FOR HIS FACE!!!!! Anyway, I hope some of this helps. All the very best to you both. Toni :x::x::x::x::x::x::x::x::x::x:

Polly 1

Thank you so much for this @tonibates1 - isnt this forum great, everybody helping others with hints, tips and support 😚 :x::x:
Just read it out to C - he thinks the ice lolly idea is a brilliant one. Never heard of bamboo plasters will look into that. Thanks again :x::x:

tonibates1

@Polly 1 yes I totally agree this forum is a proper god send. You can get the bamboo plasters from Superdrug and take them with you to chemo. Keep in touch and let us know how you get on. Huge hugs. Toni :x::x::x::x:

Polly 1

Back at the chemo unit today for number 20 (Folfiri/Cetuximab)

They are now asking why he has restarted Doxyclycline and now has it on repeat prescription???? Our chemo nurse today said he shouldn't be on it all the time and has now checked with the ward sister and Dr and all say no. He has had 14 days of the next lot so they say stop now. The first course was 14 days.

C didn't like the idea of being on permanent antibiotics anyway but did what he was told by the unit last time but it is getting confusing now 😕

His cheeks are just a bit red and scattered spots on his arms but his neck/upper chest has mostly cleared up now.

jinnyp

Hi @Polly 1 I can understand C not liking the idea of antibiotics all of the time - I didn't either and didn't take my Doxycycline for a few days and had horrendous breakouts everywhere and promptly restarted them. I have been on them since last November. My Oncologist is happy for me to take them regularly long term as long as my Liver function doesn't suffer - it is recommended apparently for Cetuximab reactions - there is a scale of side effects and that is one of the things it recommends along with hydrocortisone cream. I'm sorry I don't have time at the moment to read all of the replies - does C use hydrocortisone cream at all - I found it to be one of the most helpful things for the rash. :x::x::x:

Polly 1

Hi @jinnyp thanks for the info. It's very confusing as we were told last time he should definately be taking Doxycycline and this time definately not. We were due to see the Oncologist next week but that has had to be cancelled due to a family illness in India. We were hoping to get the CT scan results then but all appointments are 'pending' now.

I have now managed to get a GP appointment for 2 weeks time so hopefully he will be able to access the report for us if its ready. No C dosnt have any hydrocortisone cream so we will also ask him about the cream or anything else that may help. We asked at the unit today and they said they only have Pliazon so to ask the GP if anything else will help with his skin.

jinnyp

Hi @Polly 1 I'll try and find the guidelines for side effects for Cetux and maybe you can show them to the GP or C's team. It's so confusing and I guess every taem does things a little differently but the hydrocortisone made a world of difference to me - I didn't want to leave the house before I started using it and I was able to use make up to dampen down the spots and redness - poor men don't have that option! :x::x::x:

Polly 1

The one benefit of Dexamethasone - just got the house hoovered and now he's making lunch! 😁

Sean

Another shout for Aveeno here @Polly 1 Only cream that helps mine. Im 2 cycles back into cetuximab now, not getting anywhere near the reaction I was before.. Still I feel it will do a job.

Polly 1

Thanks @Sean I'm glad you got Cetux back. I think it's good stuff.

C is on day 7 today and finding the skin on his face to be very painful tonight as it has been on previous cycles. Nothing is helping and all this heat is making things worse I think. His skin is OK for days 1-5 then day 6, 7 and 8 it really flares up and is very, very painful. Then it calms down slowly. He has been told not to take Doxyclycline and just has Pliazon and Zindaclin prescribed. We bought Aveeno, Nivea and Vaseline after reading about it on here. His skin isn't dry just red and painful with areas of scaley stuff like cradle cap which is painful to remove.

He is keeping indoors most of the time - praying for dull days and rain soon.

Edit: paracetamol has helped dull the pain thank goodness, he's much happier now.

Hope all continues OK for your treatments :x:

DMR700

Does anyone get cracked skin between their fingers? Tried o’Keefes and aveeno but nothing seems to help!

Baxter2

Yup! I get it almost constantly @DMR700 and have tried many remedies! It's difficult when you have to keeo washing your hands to avoid infection too! We just can't win can we? I also get cracks/cuts on the pads of my fingers and sides of nails. They look like nothing but are quite sore! Don't even get me started on my grotty toenails 😱 !!!

I use Pliazon cream which I like best as not too greasy (I use it on my dry crusty face too!) I also use a little hydrocortisone when they are bad. Marigolds are a must especially using cleaning products (only on steroid days of course when energy gets a boost! 😉)

Ask for Pliazon from your chemo unit and hydrocortisone from GP on prescription

Lots of love,

Karen 💛💜💚💙❤️

DMR700

Thanks @Baxter2 they are painful aren’t they! Like severe paper cuts! I also get them on pads and around nails. I have pliazon for my face but haven’t tried it on my hands, I’ll give it a go! :x::x::x::x:

Baxter2

I use it constantly on my hands @DMR700 (not that you would know it mind!) yes, severe paper cuts is a good description! Ouch!

K💜💚💛💙❤️

tonibates1

@DMR700
hello, my hubby used UDDER CREAM for his hands, BUT DONT PUT IT ON YOUR FACE!!! he learned that the hard way....... Aveeno was great for his face, but defo use Udder cream it really worked for him. :x::x::x::x::x::x::x::x:

Jane39

@DMR700 ... what happened when he used udder cream to face ... I had a horrid face flare a few weeks ago ( angry , red , dry , swollen) and used udder cream and wondered if it made it worse !!!! ?

Jane39

@tonibates .... did the udder cream cause more problems when used on the face ? Thanks :x: