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Picture of Topic Managing treatment and side effects


Topic Managing treatment and side effects

Share experiences, and ask questions about treatments and managing side effects.

  • 16 conversations

About to start chemotherapy

Started by Anonymous on 10 February 2018 at 08:21

Hi, I was diagnosed on 19th Dec which was swiftly following by surgery to remove the left part of my colon plus 37 lymph nodes. There are also 2 very small spots on my liver. I’m now 6 weeks post op. I had a port inserted in my chest on Monday & am due to start chemotherapy on Tuesday. I’ll be on a 2 week cycle of 5FU & something else beginning with an ‘I’ that I can’t pronounce! I’m 39 & have 2 young children. Does anyone have any tips on how to get through the next 3-4 months with regards to avoiding infections/bugs as best as possible, good things to eat & keeping sane? I’m starting to get really nervous about it now it’s getting closer. Thanks all x J

Comments (7)

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Displaying 7 comments

  • Picture of SusieQ
    From SusieQ  
    19 February 2018 at 09:29
    Edited on: 19 February 2018 at 09:31

    Hello Jody,

    Your weekend sounds very uncomfortable. Trapped wind isn't uncommon with chemotherapy, the gut is very sensitive. The peristalic action (wave like action that pushes stools through the colon) can become faster or slower, so wind, diarrhoea or constipation may occur. There's a useful article here, on the subject - 'Abdominal pain and cancer' (from Chemocare - it focuses on side effects of chemo).

    I would contact your oncology helpline, to see what they suggest to relieve it. They can also check how you're doing generally. For example, if you're on steroids as part of your chemo regime, it can trigger insomnia.

    The trapped wind should start easing soon...and your sleep pattern start returning to something more like 'normal'....but it can be an anxious time - particularly this first cycle. You dont know what to expect, and everyone responds slightly differently to treatment, side effects vary.

    Warm wishes



  • From Anonymous
    18 February 2018 at 07:46

    Really struggling with trapped wind! Been so uncomfortable with it since Friday evening on top on insomnia - absolutely exhausted. Is trapped wind a normal side effect? Just worried in case it’s something to do with my port instead.

  • Picture of Robyn
    From Robyn  
    16 February 2018 at 09:48

    Hello  Jody

    Glad to hear all ok so far – you mention a nosebleed. Chemo drugs can sometimes lower the levels of platelets ( the cells that help blood clot ) meaning that you bleed more easily than usual. It is worth giving your specialist nurse a call just to let them. Its worth mentioning the insomnia too.

    I don’t know which you had however it may be one of the drugs you were given for anti sickness. They are also part of the treatment so don’t stop taking them if you have been given a course however, for the next course they may alter the timing/dose.

    It sounds as if the cold cap didn’t work out for you they can be very uncomfortable and as you mention claustrophobic however I imagine you will feel reassured that you gave it a try.
    You mention Barts – I visited the Centre for the first time yesterday and can certainly recommend a visit . You sound a very active person usually perhaps whilst you wait to be able to swim you could try some tai chi or yoga - there are drop in classes for both at Maggie’s Barts you can find out more about What’s on here.
    Best wishes

  • From Anonymous
    16 February 2018 at 07:33

    Hi, It all seems to be going well so far. Only side effects to report as of yet are insomnia & a random out of the blue nosebleed I just had. I gave up on the coldcap after 30 minutes as it felt really claustrophobic & uncomfortable. They took my take home bottle of chemo out of my port yesterday so am now hoping that my wounds heal quickly as I’m desperate to go swimming (I had been 2&1/2 years in training to swim the Channel thus coming August before I found out about my very unexpected diagnosis a few days before Christmas). My swim has now been delayed for a year. Thanks for the tip about Ellie’s Friends - have signed up with them. Thanks for all your support in here - I’m still hoping to be able to go to visit Maggie’s at St Barts next week all being well. Have a lovely weekend all. Xx Jody

  • Picture of SusieQ
    From SusieQ  
    14 February 2018 at 09:24

    Hi Jody,

    Thank you for your kind words. I do hope everything went to plan with your treatment yesterday - the cold cap can feel a bit uncomfortable for some. You may be feeling some side effects of the treatment today, so take things easy..(as easy as you can with two little ones around).

    I hope you get a chance to go to Maggie's Barts. Maybe, whilst you're there (or at your hospital) you could ask about a 'Look Good, Feel Better' workshop? You can find out about any sessions available near you here.

    The other thing to think about, is looking at Ellie's Friends website. They provide frequent freebies from caring businesses and individuals, to offset some of the financial and psychological impact of a cancer diagnosis. Worth looking for something to treat yourself, as you go through the treatment...

    Warm wishes


  • From Anonymous
    13 February 2018 at 11:23
    Edited on: 14 February 2018 at 04:12

    Hi Sue, Thanks for this. Currently sitting on my hospital bed having my pre-meds before the Irinotecan (?) starts & waiting for the cold cap to get cold! Quite ironic that I’ve helped raise money for cold caps through doing the Moonwalk a couple of times. If I’m feeling well enough next week I may jump on the tube & go to the Maggie’s at St Bart’s as that’s the easiest one for me to get to. Royal Free is nearer but I don’t like driving in London so tube to St Barts is probably best. I think what you guys do is amazing - the advice & support on here is just phenomenal. Jody x

  • Picture of SusieQ
    From SusieQ  
    12 February 2018 at 12:42
    Edited on: 12 February 2018 at 17:30

    Hello J,

    You're possibly having your port fitted as I type this, so I'm imagining the nurses may have gone through your pre-chemotherapy information with you today? However, it's a lot of information to absorb, so it makes sense to check out what you can do to help yourself over the next few months of treatment.

    I'm wondering if the other drug you're on is 'Irinotecan'? You may be on 'FOLFIRI' (Cancer Research UK) which is given for bowel cancer (fortnightly), but your nurses can confirm that for you.

    There's a helpful section 'avoiding infection' (Macmillan Cancer Support) which gives useful advice on how to remain as infection free as possible.

    Having young children worries parents having chemotherapy sometimes, as they naturally bring home viruses and colds etc, from playgroup/school. Encourage them to wash their hands when they get home. Dont share your utensils, cups etc for this temporary time. It can be handy to have some antiseptic handwipes to wipe door handles, toilet flushes and basin taps etc.

    If you've got pets, handover cat litter/poop picking duties, or make sure you have gloves on. They can get a bit enthusiastic, so trying to avoid scratches and bites can be helpful.

    The main thing is that you've still got to get some pleasure whilst on the treatment - going out for walks on good days, and still talking to friends etc.

    The priority is to keep an eye on your temperature, so having a good thermometer is key. Reporting any symptoms to the chemo team (they should give you a helpline number) is key. You won't be bothering them - that's what the helpline is for.

    Sometimes infections happen despite the best avoidance of germs. We carry our own bacteria around us all the time, and sometimes they can trigger an infection. Having teeth checked out by the dentist before chemotherapy is encouraged, although you may not have had time for that, with the tight schedule you're under. Also, ask your oncology team about whether a flu vaccination would be helpful.

    CarolineH, our online nutritional therapist, has written a good blog ' Nutrition and colon cancer', which you may find helpful. In addition, her blog, Nutrition  - eating through chemo' gives useful tips.

    It can be hard to imagine how you might feel, emotionally over the next few months. You've been through a great deal already, with the diagnosis and its impact. Having the chemotherapy can, in a way, help you feel that you and the oncology team are doing something pro-active to treat the cancer.

    Along the way, there may well be down days, so check out at the hospital what psychological support they have available for you to access. Support groups can help too - so that you feel less alone in all this. 

    If you live near one of our Maggie's Centres, you'd be welcome to drop in, and fnd out about strategies to help you - practically and emotionally. (If you're not near one of our centres, hospitals often have cancer support and information points).

    You can message Robyn and myself, here online, if you need a space to talk anything through.

    Warm wishes



Displaying 7 comments

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