Six months chemotherapy following surgery and stoma - questions and general moaning!

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Good morning folks:

I had my first cycle of 12 chemo over the next six months (Folox at cancer unit and fluorouracil by pump at home)  I know it's early days but lord it's grim, I get it's potentially saving me, I get there are younger people way worse off ... but ... today is finding me very low.  Everything tastes absolutely vile - can anyone tell me whether it's just a few days or the entire six months?  the inability to tolerate cold drinks, same question?  does the nausea last more than a few days?  If I knew there was likely to be 7days out of 14 that were normal(ish) it would be so much easier to deal with.

It would probably be easier if I could have my dogs back but sadly the district nurse didn't turn up yesterday to disconnect and flush my PICC so it's difficult to manage them with a long line and bottle hanging off my PICC. 

I'm sorry to be so very miseryguts when I'm possibly one of the luckier ones with (fingers crossed) a light at the end of the tunnel but I started this year as a happy, healthy 71 year old with an active life and that all changed on 2nd February when a colonoscopy showed the cancer, after imaging it was confirmed that I had a rectal tumour and malignant sigmoid polyp and would have surgery and a stoma.  Ten hours of surgery left me battered but I finally started to get back to myself only to be told, after quite a long wait for histology, that I had six months of chemotherapy to go through next.  It feels like my whole life has crashed in just a few months and I do send apologies to those of you who may be in a much darker place.

If anyone has any thoughts or answers or suggestions I would be very grateful!!

Take care all

Julie

  • Hi and sorry you have to deal with this?

    I too had a similar journey 10 years ago minus the stoma. Both my bowels were re joined luckily. Followed by adjuvant chemo for six months which include oxilaplatin and chemo tablet. I never felt sick but could not touch or drink anything cold. The treatment gave me 10 clear years unfortunately the cancer has returned. 

    Im now back on pretty much the same treatment apart from I have a pump this time and am having immunotherapy included with the chemo so that a plus. Mine is now incurable and inoperable so this is to keep me here a bit longer hopefully. 

    My advise is take one day at a time give it your best shot live life to the  full and try not to dwell on it as it will bring you down. 

    I know it’s difficult but in my mind I just think whats going to happen will happen no matter if I worry or not do I try to focus in all the positives in my life and that’s how I deal with it. 

    Whatever is going to be in my next Ct scan will be there regardless if I worry or not so I choose not to worry. I still have at least that control and that’s how I deal with my news. So that’s my journey. 

    I wish you all the best in your journey and will have you in my thoughts. Heart

    Cath

  • Thank you for that Cath, I'm so sorry yours has come back - we seem to be on the same regimen now. Because it's the first of the 12 cycles I wasn't sure what to expect and this morning I was incredibly low.  I have discovered from another poster that one of the anti-nausea meds stops you sleeping, thankfully I had my last one yesterday so perhaps some zzz zzz zzz tonight will improve things.  At the moment I'm being told that this is supplementary/ precautionary treatment that will hopefully close things down before they reverse the ileostomy.

    I'm sorry you are clearly in a different place and I wish you luck on your latest trawl through the joys of chemo, take care Cath - I will look out for you over the next six months we're doing this particular trip together.

    jx

  • Hi,

    You are on the same journey I was 10 years ago and honestly once you get into the cycles it’s not too bad. 

    You are on a belts and braces approach just a mop up exercise. I’m sure you will be fine. You will probably be under the hospital for 3 years or so and then you will be discharged to continue with your life. 

    Im 69 this year and I’m extremely happy just another blip in life to overcome. 

    Keep in touch it’s nice to talkHeart

    Cath

  • We are doing this together and we’ve got this kid lol Heart

    Cath

  • Hey JessieJ

    Don’t apologise for having a bad day. I had my first infusion of chemo nearly three weeks ago, and didn’t realise that some of the side effects were immediate! I washed my hands and went into shock. Not the dangerous death kind thankfully! I lost my voice for a couple of minutes and my blood pressure shot up. I had a little meltdown at the hospital, but 15 minutes later was on my way home. We all suffer with different degrees of side effects and not all of them thank goodness. I’m also interested to know if some of them last the whole time, or if there’s any break in between infusions. I’m sure you’re grateful to be in the position of being able to have treatment, it doesn’t mean you’re not suffering. Take care. I’ll keep an eye out for you in future.

  • Hi JessieJ

    There is a great discussion thread on tips to get through chemo. You may find it helpful:

    community.macmillan.org.uk/.../chemo-care-top-tips--

  • Hi Jessie

    If it helps, this is my journey in brief:

    Diagnosed with rectal adenocarcinoma in Sept 2021. Lower anterior rection to remove tumor successfully on 12 Nov 2021. Awoke with an ileostomy. Histology reported Stage 3 with 11 lymph nodes positive. Started 12 cycles of Folfox chemo on 12 January 2022. Got through final cycle in July 2022  after a couple of postponements and an infection. Oxaliplatin dose reduced after cycle 5 and stopped after cycle 9 due to side-effects of peripheral neuropathy, from which I am still suffering.

    Chemo side-effects were manageable. Steriods made sleep diffiult for the first few days of each cycle. Cold sensitivity only lasted a few days and my appetite was not affected. Fatigue got progressively worse as cycles went on. Once the chemo finished I felt I had progressively more energy week by week.

    Saw my surgeon in August 2022, who agreed to reverse the ileostomy subject to clear scan and sigmoidoscopy. Placed on list for a reversal in October 2022. After a couple of cancellations I finally had my stoma reversed on 4 May 2023. I am recovering well. Scar has healed and bowel control is improving gradually.

    I will admit it has not all been plain sailing, but having a positve can do attitude, and not worrying about things outside my control has helped immeasureably.

    I hope this helps.

  • Thank you so much Spider, you've got the 'been there/done that' t-shirt for my current journey and have covered all my questions - I'm so grateful to you, today has been miserable and I've struggled to eat or drink anything with the vile taste and nausea, if there's a chance of just a few days relief from it all in each cycle I think it'll be more bearable.  I feel as if I've done nothing but moan today but since the first cycle on Thursday morning this has been the worst day, the prospect of another five and a half months is miserable ... but very necessary.

    Thank you and everyone who has been so kind today when I've moaned my way round a couple of the forums.  I'm looking forward to getting some sleep tonight and wish you all a peaceful night.  Take care all jx

  • Hi Jessie J.


    I’m sorry you’re having to go through this. There’s nothing wrong with moaning we’ve all done it and this is a great forum for letting off steam in a safe place. It takes a time to assimilate everything that’s going on and come to terms with I, we’ve all been there – and there’s bound to be ups and downs along the way.


    My story in case it helps a little. I’m 66 and had an LAR in January 2021 with temporary ileostomy. Stage 3 rectal cancer and 12 nodes removed, 1 of which was suspect. I had a 6 cycles of (mop up) Folfox, each cycle was 2 weeks which started at the beginning of March 2021.


    I had a PICC line fitted and the cycles consisted of:
    Day 1 infusion as outpatient, then fitted with 46 hour pump (I wore it in a bum bag) and sent home. The pump was disconnected 2 days later, I went to the hospital but sometimes the district nurse will come to you to disconnect and flush your PICC line. Day 4 to day 7 were the worst; mainly tiredness and off food (although I could eat if food was put in front of me), then from day 8 I’d start to feel better and this would continue until start of next cycle on Day 15. After my first cycle the Oxiliplatin was reduced to 80% and this helped greatly.
    Somewhere on here I posted detailed information of how I felt each day of each cycle for someone who asked. I’m not sure how to find it but will try and link you to it if I can. I found keeping a dairy of how I felt and what I ate each day really helped me see a pattern forming. I pretty much lost my sense of taste for the whole time but everyone reacts slightly differently.


    For me the tiredness and weariness was by far the worst side effect, but I rested when I needed and spent a lot of time outside dozing outside in the shade or wrapped up warm if cold (I felt much better if outside).


    I was told my hair would thin but I wouldn’t lose it all, I lost quite a lot and bought a wig – so no more bad hair days! My hair has since grown back.


    My energy levels returned to a good level around 6 weeks after the last chemotherapy infusion.
    Ask anything you want and I’ll try and answer as best I can with regard to my Folfox experience and things I did which may or may not have helped.

    Take care and look after yourself.

    Sending you a big hug.

    Net x

  • Hi,

    • Im in similar situation. I totally agree with you about the can do attitude. 
      Good luck on your journey Heart

    Cath