Hi I'm new here... already had surgery for bowel cancer...now going onto cycle 5 but really struggling...does it get any easier...side effects are awful
Hi sonya123 and a warm welcome to the board. If I’m completely honest, no it doesn’t get any easier as the side effects can be accumulative. It’s useful to keep a diary so you know which days are harder and which are better so you can work around those days and plan something nice for the good days.
Youve not said what you’re particularly struggling with but please have a chat with your nurses as there is a lot of help available. There are several different meds for sickness for example - they tend to start you on the ‘cheaper’ ones like ondansetron but a change to something like emend can make a huge difference. The tingly feeling when touching something cold is a common side effect so wear gloves when getting anything out of the fridge or freezer and make sure drinks are at least room temperature or warmer.
You’re started on the maximum dosage for your weight and height but it’s often reduced to help combat side effects so that could be worth asking about - just a 10% drop in dosage can make a huge difference. Not sure if you’ve seen the post that we have about side effects but I’ve popped it below just in case
Hi Karen you hit the nail on the head it's the chemo side effects I'm struggling with...they've already reduced from 100% to 75% and still same....I carnt even drink room temp all juice has to be microwaved....carnt even wash my own hair because shampoo is too cold on my hands it's a nightmare....also having very dark moods and thoughts...but then some days I feel ok....ano it's not just me and I have to do this but some days I just feel like giving it all up
It’s tough isn’t it? I got quite used to warm blackcurrant juice but I tried a line and soda after one session and it was like drinking broken glass. Could you wear latex gloves for maybe washing your hair?
How many sessions are you having? Is it because of lymph node involvement from the histology after your op?
Do you have a support nurse you could ring to chat things through with? It may be that this is the belt and braces and you may feel that the side effects are outweighing the potential benefit? The support desk on the number below is also available 7 days a week from 8-8 for support, advice or just an ear to listen
I am currently on session 6 ( of 8 ) on Capecitabine 500mg (started on 5 x 500mg twice a day but reduced to 4 x 500mg twice a day on session 4 to improve the liver function). And I can fully empathise with you.Yes the side effects are seemingly cumulative but I seem to note that they’re not always the same. Mind you lethargy and nodding off at a moments notice when you fell the wave of tiredness come over you has featured since the beginning. I thought it was going to be 9 sessions of two weeks on and one week off ( subject to 3 weekly blood tests) but just been told it’s only going to be 8. Very welcome news and my final dose of tablets should be mid January 2024.
I can well understand your varying moods. I felt this at the start of the journey when (after all the scans and colonoscopies etc) I was warned that I would need major bowel surgery along with lymph nodes and possibly also liver ( and any other organs that the cancer might have invaded. However I think the surgery and removing 67% of my bowel along with a surprising tennis ball growth and nodes but only a sliver of the liver to confirm my angel surgeons view that the cancer had been limited to the bowl growth and nodes but not the liver was my turning point. After a couple of days in IC I got released on to the general cancer ward. Somehow I decided I was going to treat one day at a time and try and get rid of the cancer cells in the veins that had been feeding the growth. Chemo to the rescue and I started to walk the wards to keep fit and get released as early as possible. Had 28 days of self injecting something to fight any germs from the recovering glued surgery wound from the rib cage to below the navel. Surgeon made a reasonable attempt at reconstructing my belly button - but it’s not as handsome as my original one. Mind you got a bonus of a two pack instead of the previous one pack. Mind you my chemo belly and spare tyre is trying to get back to a one pack. Yes I agree side effects are not nice but I have decided that as the chemo is killing the little bxxgxxs that we’re left I’ve got to be positive ( as much for others as myself) and just get on with it for the comparatively short chemo period as compared to the added years that I can go on enjoying just being here another day at a time. How you doing Bowel67? Hi thanks for asking Im just Tickety boo but I have chemo side effects. Have you had the dozen blunt needles sticking into your heels when you just get out of bed (but walking on toes like a ballerina worked them off gradually through the day) Had that in session three but not returned as yet. Hopefully you will be able to see the ultimate benefits in the remaining sessions as possibly the number left will be less than you already beaten. Sorry to hear that you seem to have been going through it but you have the strength to get out the other end ( my thoughts all the time and counting down the sessions ) with the chemo and you having done your jobs. one last thing - please trust your body to tell you what you need to do and nothing better than 20 minute dozes( that you might not be able to resist anyway). Feel free if you need to chat anytime I’m not going anywhere before Feb 24
Hi Karen they took a percentage of my bowel....liver and also an abcess from my wall...they took 25 lymph nodes but 3 still had cancer cells in them hence the chemo....I'm having intravenous every 3 weeks for 12 cycles but followed by the same drugs as you straight after for 2 weeks then a weeks rest before the next cycle....the numbness on my lips and tongue has been there since just after cycle 3 and I'm now going onto cycle 5....I see my oncologist next Thurs but maybe ring my chemo nurse on Monday just to let her no this numbness hasn't changed so the oncologist is aware when I see him....thank you so much for getting back to me and helping me I so appreciate it...its really helping me...sorry for the slow delays back x
Ive completed chemo 4 weeks ago, so can understand what you’re going through. Being a normally happy go lucky person the dark moods hit me really bad. Even when my family and friends were doing their best to keep me positive I will say I was an absolute nightmare on times and said more than once ‘I cannot do this anymore’
But I stuck with it and today I had the all clear and the pain of the tingling painful hands and feet, legs feeling like they’d been filled with concrete, the nausea and the dark moods are fading memories.
stick with it, talk to your team to see if they can help further but please remember this is just for a short time and if I can do it you can too!
