Deciding whether to continue with chemotherapy and immunotherapy

DanBC
Thu, 21 Mar 2024 14:39:27 +0000

I have stage four colo-rectal cancer. It's not curable. It's not particularly treatable. I'm getting palliative care, but I'm not yet end of life. They're not offering surgery or radiotherapy (yet, that may change). They are giving me chemotherapy (capecitabine and irinotecan) and immunotherapy (cetuximab).

Prognosis is difficult, but if everything goes well I have about 18 months.

I've had 6 cycles of treatment. I had a re-staging PET CT scan and the results were very good.

But, here's the thing: chemo & immuno therapy suck. I don't just mean "I feel a bit bad sometimes", I mean "I feel awful most of the time."

We've just about got nausea under control, but those meds cause constipation and that's causing problems with my stoma. And because the nausea meds are only used for the first week it means the second week I have problems with fast output, and that's causing other problems with my stoma. My stoma team and my oncology team are not particularly joined up. In theory I can build in laxido for the first week and loperamide for the second week but that's complicated because side effects are so variable. And that's just stoma output -- there's a bunch of other stuff around pain, fatigue, skin toxicity (I'm not allowed in the sun, even on bright but overcast days. I have to use three different creams, but not too much of any of them, and they're not compatible with each other), loss of appetite, etc.

One example of how healthcare isn't joined up and I'm getting conflicting advice (there are lots of these): My stoma team want me to wear a hernia support belt to prevent my hernia getting worse, and to help my stoma work properly. But this is a tight broad elastic belt going round my lower abdomen, right where my diaphragm is, and so it makes it harder for me to breath. My physio doesn't want me to wear the belt because it's interfering with fatigue treatment (which is "do more stuff, but do it slowly, and build in breaks, and FOCUS ON YOUR BREATHING"). My oncology team have no opinion and are leaving it to the other teams.

I know some people just want more life, and they don't care about side effects. "Do anything you can to give me more life". But that's not me. I'd much rather have 3 months of mostly feeling okay and then a month of active death over a year of mostly feeling fucking lousy and then a few months of active death.

I don't know how to talk to my family about this. I have spoken to my care team and they're giving me all the options - (1) continue chemo and immuno therapy on 2 week cycles until I die or until it stops working, and try to buidl in better support meds. (2) continue chemo & immuno on 2 week cycles, but build in breaks (3) stop chemo & immuno and focus on pain relief.

Some tricky decisions to be made.

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