Irinotecan, 5 fluorouracil (5-FU) and folinic acid chemo

Hi Alsopkj

My husband who has colorectal with secondaries on his liver and lungs, was on the combination you are shortly to start, I believe it’s known as Folfiri, he had diarrhoea but took loperamide to help and his hair has thinned. They are now including a monoclonal antibody, cetuximab, which is renowned for causing an acne like rash, which upsets him, as he feels like everyone is looking at him but if it helps fight the cancer, happy days.

He only had the PICC line fitted 11 days ago, it was a very long day as we were at the hospital from 8:30 am to 7:30 pm, he also had an chemo pump attached which automatically pumped additional chemo through the line for an additional 48 hours. We returned to the hospital for it to be removed, which actually was me being told/supervised how to do it so we wouldn’t have to have, yet another 1 1/2 to 2 hour round trip for them to remove. I took considerable notes, so crossing fingers.

Apparently, District Nurses are generally not trained in the handling of chemo but obviously a retired IT teacher has the necessary skills, although the district nurse we had did try to make a request she had no joy. We also asked his Oncologist, and he repeated that generally the district nurses are not trained in the handling of chemo, when we yet again queried, he said speak to the nurses. 

A District Nurse comes every 7 days to flush the line and take bloods.

I do hope everything goes well.....all my best Budge

Hi Budge thanks so much for sharing your husband’s story and chemo treatment thus far. I hope everything goes well for him. I was told of the hair thinning side effect - I have very thin hair anyway haha! I am having my PICC line  inserted on Friday before chemo starts on Monday. I will visit the hospital I think fortnightly with the district nurse visiting on alternate weeks.  I wasn’t told I would need to disconnect pump but we will see.  Best wishes to you both.  

Could I ask how long approximately it took to insert the PICC? Just wondering if I need to arrange for a dog sitter? I think the chemo treatment takes about 2 hours but again we will see . Thanks 

It didn’t take that long, about half an hour. I think we were there so long as he had the picc line put in, then a 3 hour drip then another wait and the other 2 drips done slowly as they weren’t sure how he would react. Hopefully you’ll be in and out before your dog has even missed you. Hope it goes well.

Best wishes.....Budge

Hi, thanks again.  From reading my appt. letter again, I’ve got bloods appt. first before my PICC appt. an hour and a half letter. My chemo appt is stated to be 4 hours with an extra hour needed on my first appointment.   I was just wondering how fatigued your husband has been so far from the chemo? Thanks 

After the chemo, Thursdays,  I think the steroids do their job and he’s fine, maybe a little prone to drop off  for an half hour power nap, his worst days are Sunday evening, through Monday and Tuesday, he has a lot of diarrhoea, which is hard on him with his stoma, he’s a little brighter by Wednesday or Thursday. His last cycle he had the additional Cetuximab, which has given him the acne type rash that people get with it, apparently, according to his oncologist, usually the people who have the rash reaction can benefit the most, time will tell when he has his scan. 

He has always been very fit and up to starting on the Cetuximab, could just about manage 9 holes of golf. It’s very important to him to get outside and walk, so other than his bad days, we generally go out as we live near the coast. I think the fact our 4 and half year old granddaughter lives with us, along with our daughter, also keeps him on his toes. 

I hope Friday goes well, best wishes....

Budge

OK thanks again got sharing your info - I hope I’m able to go out for gentle walks also after chemo starts - I’m pushing myself to walk 5 miles a day this week to get as fit as I can beforehand! 
Best wishes sent to your husband for a relief of the side effects. 

Hi, just wondering how you got on with your picc line, hopefully you’re ok and not worrying too much much about Monday. 

My husband had his treatment on Thursday and so far he’s doing ok, he’s fine in himself and the antibiotics and steroid cream have just about cleared his rash. We’ve been down to Totnes for lunch, whilst watching our daughter paddle boarding. The removal of the deflated chemo pump was fine, although I must have cleaned my hands 10 times but I think it would be too difficult for someone to do for themselves.

I guess you must be quite fit walking 5 miles a day, I’m sure it’ll help you get through your treatment plan, it’s certainly helped my 68 year old hubby’s mental and physical well-being.

Crossing fingers you’re ok after your 1st cycle.....big hug Budge

• Hi thanks for thinking of me - the PICC line went in well thankfully although my arm’s been a bit achy tonight.  I don’t know how but I got the date of my first chemo session wrong, I’m actually having it on Tuesday! I return to the hospital then on Thursday for the pump to be removed - I am glad that  we’re not expected to do this ourselves like you are! I did see your pic and so pleased you had some nice family time and that your husband’s rash is better. Take care x

I think there’s so much info to take in, its quite understandable, but at least you know now and you don’t have to remove the pump, phew, although I have typed up some step by step instructions, worst was keeping the tablet open to view, as I had to keep my hands sterile. 

All my best wishes for tomorrow.....Budge