Stage 4 colorectal cancer

Hi Amanda

Thanks for getting in touch. Knowing what to expect from chemotherapy can be daunting. It is only natural you have questions around your treatment, especially when you experience increased side effects.

There are many side effects of chemotherapy and different drugs can cause different effects. You can find more information on your individual drug regimens here.  You do not mention what side effects have occurred, but it’s important to remember that you probably won't get every side effect listed.  Our booklet on understanding chemotherapy explains much of what to expect from treatment and advice to help patients to manage any effects of chemotherapy. Different chemotherapy drugs can have different effects to an individual. Some side effects are more common than others, but you will not have them all. Unfortunately, there is no way to predict who will get what and to what extent. Sometimes the side effects of chemo can be unpleasant, but it can help to remember that:

• most side effects are short term during treatment
• they’ll begin to go once the treatment has completed
• patients can have medicines and support to reduce most side effects and help to manage them.

It is not uncommon for some side effects to become slightly more pronounced after each cycle for patients Amanda.  Please discuss your symptoms with your team so they can assess.  They may look at changing the dosage of any future treatment or changing your side effect treatment drugs to help reduce any further concerns with side effects. 

If your recent side effects are new symptoms, it is important to report them to your specialist team as soon as possible. That way they can support and help to manage any side effects that you may have. Your team also need to know that your pump has emptied faster than expected so they can assess the pump, however the side affects you have recently experienced may NOT be related to this occurrence, so please discuss.  Your clinical specialist nurse can also provide support at this time too. 

Infection risk

Some cancer treatments unfortunately do affect healthy cells in our body such as your blood cells and the body’s own immunity (ability to fight infection). During chemotherapy you can be more vulnerable to the risk of possible infection. It is important to know how to reduce the risk of this and what to do if you feel unwell or are concerned around any new symptoms.

If you ever feel unwell, shivery or feverish it is important to check your temperature Amanda. Ensuring you have a thermometer at home can help you check your temperature, if needed. Any spike in temperature above 37.5 ⁰C and particularly above 38⁰C should be to be reported to your oncology team at once for advice and support. You should have been given a direct contact number that is available 24 hours a day to contact should this happen. If you are unable to get anyone directly then you should contact 111 or 999 at once.

It is natural that you will be concerned about your next chemotherapy cycle Amanda.  The benefit of even taking a few minutes of time for yourself to talk to others about their own shared experiences, can be very helpful for some. You can access our online community for this support, as well identifying local support via our online search tool which may be helpful right now too. Talking with your partner, family, or a close friend can also help.

I hope that this information is helpful Amanda. If you have any other questions, please don’t hesitate to get in touch again.  It may be helpful to call our support line.  You can speak to one of our experienced cancer information nurses by calling our free helpline on 0808 808 00 00 seven days a week from 8am – 8pm.   Sometimes a conversation over the phone may make it easier for you right now – see what you think.

I hope you get your side effects sorted Amanda and all the very best for the remainder of your treatment. 

Warmest Regards  

Kenny   

Clinical Information Nurse Specialist  

Reference:  KD/KG

Hi Amanda24 

My mum’s team have always slowed down her infusion to reduce side effects so I can see why emptying faster could cause you to wonder if it’s causes more side effects if it infused too fast . I would contact your team and let them know as it could be a problem with the pump !

Take care ,

Court 

Hi Amanda24,

It's Matthew here from Macmillan's Online Community Team. Thank you for originally posting your question to our Ask a Nurse forum group. I hope the reply from Kenny- Macmillan  has provided you with the information you needed.

This is just a quick message to explain that we moved this discussion thread to our Bowel (colon and rectal) cancer forum just before Kenny very kindly replied. We did this as you originally posted your question in several forum groups, and these duplicate posts were caught by our duplicate post filter.

Because it sounds as though you also wanted some input from other Online Community users, we'll leave your thread here in the Bowel (colon and rectal) cancer forum for further Community support.

Don't forget that if you have any further questions for our Macmillan professionals, you can post a new question in the appropriate section of our Ask an Expert forum. Our expert teams usually respond to questions posted there, and wouldn't normally respond to a post in the general Community forums.

If you need any tips on using the site, please check out our Help Pages. If you have any questions, please don’t hesitate to get in touch with us in the Online Community Team. You’re welcome to send us an email at community@macmillan.org.uk, or you can send a private message to the Moderator account.

Hi Amanda24. I’m sorry to read of your distress at these side effects. Although I can see you’ve been advised to mention these to your “team”, I didn’t see a reference to the chemo hotline. You should have a 24/7 number to call and if you’ve not done so already, I would encourage you to report what’s happened to them rather than wait for your next appointment. If you are able to share what’s worse, I might be able to share my experience of what helped me. 

Hi Amanda!

My husband was on Irinotecan and 5FU. Unfortunately he had to stop after one session because he became dehydrated and had low kidney function. He was previously on CAPOX (Capecitabine and Oxypalatin) he managed 4 sessions of that before having to stop also after becoming ill after the 4th and sailing through the first 3.  He went on to the Irinotecan/5FU after a break from CAPOX. He has just got home after his 3rd bout of Sepsis after being in hospital for 3 weeks. It was quite serious. All his cancer treatment has had to stop due to his kidney function which was discovered had been caused damage through the chemotherapy. Please don't let this alarm you because everyone's treatment is different.  Please do however, do as Kenny from MacMillan says and report any symptoms of high temperature fever or chills this is how we found out my husband had developed sepsis the first time and then unfortunately it hit him twice again. But as I said everyone will not go through this and everyone tolerates their treatment differently. My Best Wishes and Good Luck to you. 

Vicky