First session on Folfiri

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Hello all,

Had my first chemo last Tuesday. The pump part was removed on Thursday no issues. Noticed my breathing getting harder and harder. Got really panicked on Sunday by it, and called in. Ambulance trip up to A&E. Xrayed and blood tested. Blood test showed elevated D-dimer. Doc gave me a blood thinner jab and ordered CT scan to check for pulminary edema. Lung blood clots confirmed on Monday after scan. Now on blood thinners for the duration.

My face feels like it's been peeled and I can hardly eat as my mouth is just incredibly tender and stinging. Milky drinks help. Using skin creams (nivea) and the like and Aloclair mouth wash. The skin creams do work well and give quite good relief. Been using corsadil mouthwash for ulcers and stuff but didnt really help. Too stingy. Got the Aloclair stuff today and while still stingy, seems to help at the moment. Will be contacting oncology tomorrow to talk about this.

Has anyone else had trouble with this regime this early? I kind of expected it to accumulate and ramp up over the course, but not like this. I am worried about having another dose which is due Tuesday coming. Hence the call I will make tomorrow.

I know I have been like a bear with a burnt backside and my wife is being incredibly supportive, but its getting her down as well. She doesn't want me hiding anything or being stoic or anything, but, prrrffft.!!

Thanks for listening.

Kareno62 23 days ago

Hi Whisperer I didn’t have this chemo although I did develop large bilateral pulmonary embolisms after one of my hospital stays which, according to my surgeon, can be a side effect of the cancer.

Ive attached a link to a post from a couple of years ago where Cecile recommends coconut oil for soothing a sore mouth?

RE: Skin in mouth peeling

Hope this helps

Karen x

ps there also some previous posts below about folfiri

https://community.macmillan.org.uk/search?q=Folfiri#smpq=Folfiri&serpq=Folfiri&serp=1&serpgroup=84

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Squarebox 23 days ago

Sorry to hear you have been suffering. Not sure if this helps but I was given aspirin to gargle which takes away pain from sore mouth and ulcers. I have had two years of fortnightly chemo (apart from break for op last summer) and have been given mouthwash which I use daily (no alcohol contained). Gel X, steroid tablets to garage and Nystatin for oral thrush. At the moment gargling aspirin works best for me but you need to check with Dr first. I have had sore mouth after every chemo session.

I wash with urea cream and was given Euracrin cream for face and body as I am on targeted therapy which affects the skin. I have started using Flexitol on my body and Diprobase on my face as the urea in the creams make my skin red and stingy.

Not sure if this helps but good luck with your treatment.

Whisperer 22 days ago in reply to Kareno62

Hi Karen,

Thank you for the reply. Got some coconut oil and yep it does soothe also tastes ok and doesn't sting like mouthwashes do. Reminds me of a macaroon bar. Remember them? I am trying difflam, leave for a bit until it starts numbing, and then a bit of oil. Takes it down to a dull roar. Thank you again for your suggestion.

Hope all is well with you.

Whisperer 22 days ago in reply to Squarebox

Hello,

Thank you for sharing. I've been to see the onc nurses and they have given me a load of stuff to try. So far my skin is feeling ok with the e45 and nivea but they gave me a load of other stuff, urea cream among them. As the mouth is the bit that is really giving me trouble I'll go with anything. Not so bad now as using cocnut oil is helping me tolerate the stingy mouthwashes long enough for them to work. I'll be on this for ever so just need to stop being a woose.

How are you doing?