Chemo side effects

[AccordiontheCat]

Posting for traffic as the Cancer threads are sometimes a bit quiet. A close relative has just started chemo following surgery for bowel cancer, first cycle was going well - manageable symptoms for first 2 weeks but now really unwell. We've contacted the chemo nurse team but they don't seem concerned, but my relative is really struggling and is usually very stoical! Has stopped taking the tablets and says they won't continue with chemo (we're on cycle 1 of 7!). Any tips or hand hold welcome, I can't be with them as I have my kids here, it's so difficult x

Hi @AccordiontheCat
Sorry to hear your relative is struggling
What side effects?
How bad?
I would suggest speaking to the nurse or going back in on Monday, they will potentially reduce the dose and so bloods?

Advise them not to stop if possible

Thank you - main issues are diarrhoea, nausea, fatigue, mouth ulcers and skin rash. They have neuropathy as well but that's been manageable. They aren't able to eat or drink much so I'm concerned about dehydration, it's been a few days now but hospital haven't asked them to come in - nurses just said it's really busy at the hospital (not very helpful!). I really think they need seeing face to face as really not coping well, but my relative is worried we will be waiting for hours in A&E (they sometimes admit directly to the ward, or sometimes via A&E apparently).

Hey

He's sounds like they need hospital admission, some hospitals have asessment units that isn't a and e?
Jf not it'll be a and e

I'm sorry your relative is going through this, just wishing them strength to get through this xx

I was very unwell after my first cycle of chemo. Mainly sickness, diarrhoea and loss of appetite. I thought it was all normal side effects, but contacted the ward after the weekend, they told me to come in to be looked at, I was getting more and more confused and sleepy and I ended up being admitted for nearly 2 weeks and having to stop chemo.

Chemo side effects are horrible, and normal, but if she is worried then she should probably go in for assessment. Diarrhoea and nausea can be treated with medication and that should help with the dehydration. A&E is not the best route. She will have a contact number to ring and the unit where she is being treated should have an assessment unit as well. My experience of cancer care is that they do take these things seriously, chemo is, after all, poison. If she is taking anti diarrhoea and anti nausea meds as directed and making a conscious effort to hydrate and is still really feeling unwell she should contact the unit again, or (given that it is Sunday) the cancer ward. The numbers she should ring will all be in the information she has been given.

Is there an urgent oncology number that your relative can ring?
There should be a unit that deals with urgent matters like this and I would expect him/ her to be called in for assessment.

Should have been given the number in an info pack at the first chemo treatment.

You need to call the chemo helpline or the oncology ward. They will triage over the phone. I have a 24 hour number to ring.

I have been in hospital recently with an infection. I rang the oncology ward and was told I needed to come in, but they were full, so I was told to go to my nearest A&E. I was fast-tracked and ended up on a ward in 3 hours.

Take temperature

Is she being given chemo intravenously? You mention about stopping taking tablets.

Is she taking all the steroids and antisickness meds?

My oh suffered with his first round of treatment and they reduced the dosage for the second round, which was more tolerable but still bad so they reduced the dosage again for third round. Even with the reduced doses, and missing some infusions, the chemo really knocked it on the head. I think it’s pretty common to go in hard at first with high doses but it is negotiable. Trouble with oh was that the cancer support nurses couldn’t make changes themselves so it was always through messages passed to the consultant so a very slow process of typically a week or 10days by which time the round had finished anyway and it was just a matter of oh turning up for his infusion or not during the round decided by him, not the consultant. Very much a matter of leaving it up to oh during each round with the consultant not being contactable.

The chemo nurse team aren't the ones to help. Your relative needs to talk with the oncologist consultant who made the prescription. If compliance with a tablet regime is not working then there might be a drip based option that could be better, or it might be that different tablets, or the same tablets combined with additional treatments to manage the side effects, could feel better. There are a huge number of different chemotherapies and an enormous amount of work has gone into making the whole experience less unpleasant but it's never going to be totally ok. Chemotherapy works by making the body a hostile environment for cancer cells - but in the process also makes it pretty tough for ordinary healthy cells too. Your relative needs to ask the consultant about whether a different regime might be more tolerable or whether anything can be done to make this regime more tolerable but just stopping would be crazy. However unpleasant the side effects are, they are less unpleasant thanthe eventual alternative.

Thanks everyone, I really appreciate the support. We have phoned the oncology nurse helpline twice this week but they just said it was all normal! I'll go over today and try and push for my relative to be seen x

To answer some questions (thanks all!) they're having the infusion on treatment days then tablets for 2 weeks after, anti nausea meds and steroids. The helpline we've been given is for the oncology specialist nurses, I think they refer to the consultant as needed x

Macmillan is the best site for cancer discussions. Lots of great advice. X

Chemo nurse here 👋🏻
Your relative definitely needs admission, they should have been given a 24 hour helpline number who can arrange admission ideally avoiding a&e. If they're facing difficulties in admission being arranged then they need to present to a&e telling them they're on chemo, they are at risk of complications caused by chemo, one of them being neutropenic sepsis which is life threatening, they should be isolated away from a busy waiting room. My concern right now is dehydration with being unable to eat and drink combined with diarrhoea, were they given loperamide? If so, they need to take 2 capsules straight away followed by another capsule after each loose stool.

If they are struggling this much after cycle one I would recommend them not taking anymore tablets and getting an appt to be reviewed by oncologist, one option they could offer is reducing the dose to help make side effects more manageable. Please don't listen to the poster who said not to stop taking the tablets.

I imagine your relative is on capox?

If you've got any questions please feel free to ask, but they need to be seen urgently.

Macmillan isn't the right place for chemo side effects, look up ukons, I've attached the traffic light assessment tool.

I agree with @yajustneverknow
You should definitely ring the 24hr hotline for help and possible admission.
The first chemo cycle is often the toughest as it affects everyone so differently, and later doses can be adjusted, with additional medications given to control side effects.
So please do ring the 24hr hotline.
The chemo mouth ulcers are truly awful to deal with, and can also extend down the throat aswell, making eating anything so difficult.
I never managed to stop mine, but what helped me when they were at their worse was "Difflan" which I got through my dentist.
This would temporarily numb the mouth and throat to make swallowing easier.

Maggies is also a fantastic charity

Sorry to hear your relative isn't coping well xx

My mum really suffered with side effects during her chemo. She was supposed to have 6 IV treatments but could only manage 5. Once finished she's now on chemotherapy tablets every day for life. To start with she wasn't coping well with them either but we were made really clear to get in touch with cancer nurse and oncologist if she was struggling with these ones as there was lots of other brands they could experiment with that could be better for her. She's okay now and doesn't experience bad side effects anymore xx

Thanks everyone, really appreciate your support! I'm going over this afternoon, will try to persuade them to go in to get checked (they are not the type to make a fuss so that might be difficult!)

Difflam (that a PP mentioned) is available over the counter. My oncologist also prescribed GelClair for the mouth sores, which did help, as did salt water rinses. It's miserable, I won't lie, particularly combined with loss of appetite, which I also had. But there are a range of medications that can be prescribed. I hope your relative gets some help soon.

Chemo is not for the faint-hearted, I really had to concentrate on the bigger picture.