Chemo treatment

Hi . I had oxaliplatin and capecitabine but I typed cetuximab in the search box at the top of screen and I can see that budge13s husband had this so I’m hoping she’ll be able to pop in and give you some advice? x

Hi there, I hope you’re doing ok so far.

My husband had his stoma done October 2019, so right now you’re having to get to used to that as well as prepare for your treatment.  He started irrigation a few months after surgery, which does give him some control and has a support, which allowed him to get out and play golf.
Unfortunately his oncologist thought there was no need for mop up chemo in January and so when he finally got a scan in August, it had spread to his liver and lungs, hence the Folfir and Cetuximab.

He had his picc line and treatment on the same very, very long day. The picc line took about 30 mins but they were very careful, the treatment was administered very slowly to ensure he didn’t have any adverse reactions, he was sent home with a small chemo pump, which works over 48 hours, we returned to the hospital 48 hours later for removal. I now personally remove it, to avoid yet another 1 hour return trip plus waiting time at hospital. He has a community nurse who comes every week, week 1 to flush the picc line, week 2 to take bloods and flush the line, they do not remove chemo pumps, they haven’t had the training.

Eventually he was advised to take a daily antibiotic to help with the quite severe rash he had mostly on his face, but extended into his scalp and  to his chest, we only found out afterwards that he should have started taking it immediately as he started treatment. He has found the rash unpleasant and particularly uncomfortable when washing his hair. He also has lost quite a lot of hair. 

It is usually around day 4-5 when he has more diarrhoea, but it has become more manageable over time, as it settles into a pattern, he also irrigates, which also helps. The treatment has helped the lung but has had no effect on the liver as the tumours continue to progress. We are also considering asking for a referral or a second opinion, but unfortunately my husband doesn’t always accept the situation he’s in, or realise how bad his health is, so it’s not easy trying to persuade him.

Please don’t hesitate to contact me again if I can be of any help. 

All my best....budge 

Hi Budge has given you great advice. I will only add that my district nurses were able to take down the pump and do the flushing at my home although the pump often ran slowly and they came out late to take it down. I got constipated at first then diarrhoea at day 3 to 4 until it settled. I didn't have a colostomy but I had a temporary ileostomy post op which was reversed before the latest recurrence. My hair thinned but no baldness, lots of tiredness but I wasn't suitable for cetuximab unfortunately.

That’s really useful advice based on experience. I will keep in mind to ask for treatment on side effects rather than just accept them. I have a district nurse weekly for picc line, and fortunately I only live 5 min drive from the hospital. I really think a second look at everything is useful - for either reassurance that all is being done, or to identify other treatments that may be available.

It hasn’t spread to liver or lungs ( but it’s been a while now since my scans), but has been super aggressive in my pelvic area and ovaries. 

Thank you!

Too right Nicky. Apart from the odd “holy shit” moments I am looking to the future and focusing on getting through the treatment.