Starting treatment on Tuesday…whirlwind and world spinning

I have just come back from the marsden and will be put on Fluorouracil, irinotecan and cetuximab this coming Tuesday 31 May.  Going to be admitted for 48 hours as there is a 2 week wait for the picc line (is this what most people have?)

I’m so scared but pleased treatment will start soon.  Can anyone advise on how to keep my body fighting through food without blocking up the colon where the tumour is?  Or good liver health ideas?  I need to fight with every bone in my body?  Any other advice for what to expect?  Thank you all in advance and for such kind words on my last post.  You made me feel so much bettter and also helped me seek help on dealing with the anxiety. 

  • Hi 

    Thats a significant step forward in managing this disease ! 
    My mum actually had a cannula but most people report getting a pic line . I will leave others to give you some tips on that aspect .

    The second year my mum had her chemo she stayed in over night . It was slowly administered as she slept . It was night and day for her in terms of side effects . Not sure if it was the slow infusion that did it . We would even head out for a coffee until her blood got the green light then I would head home and pop back and get her in the morning . It was so much easier for her .

    But once you get your pic in hopefully you can get to go home . 
    So glad you were able to seek some help . That’s a really positive step and you will be surprised how much of a routine you get into . The staff are so good at putting you at ease and meeting your needs .

    We had to navigate around what my mum could tolerate  . Kept her protein and nutrients up . But also kept an eye on her weight and that became more of a priority . Given you are at the Marsden they might have some good info . I know some NHS departments do have some guidance sheets available. You might want to Google or ask our helpline staff if they can access some information for you . 
    Chemo can do a powerful job so hoping for some great shrinkage for you .

    Take care ,

    Court 

    Community Champion Badge

  • Thank you - I really appreciate the input.  Was your mum on any of these drugs?  

    Not sure what to expect.  I’ve just told the kids and I’m heartbroken.  4 hours of crying and fear, now sleep and a mild tolerance and I feel so lost.  This treatment has to work for their sake as much as mine.  Anyone who can give me re-assurance and info on how they find the treatment would be greatly appreciated.  

    Any good books for food and nutrition and emotional support for teenagers?  I’m also up for any reading on helping cope through this?  Thank you all in advance x

  • https://www.pennybrohn.org.uk/wp-content/uploads/2019/05/Macmillan_PBUK_Eating-Well_A5_booklet_Online.pdf

    This is a general overview of diet aspects whilst on chemo like foods that are more at risk for food poisoning but you might want to ask your team if you have to follow a low fibre diet ? If so could they give advise on it . Some NHS departments have issued guidelines. If you have to follow a low fibre diet you could get a dietitian involved to guide you or there is some guidance from the nhs online . 

    I will ask Macmillan for some guidance on support for your kids . That was a very difficult conversation for you to have .  You will be emotionally exhausted but hopefully we can get some good material for them .

    Actually some of the meds you will be on were not funded back when my mum was diagnosed. We were campaigning to get them as the research for Cetuximab was much stronger on getting to surgery if it was added in . I think  has though . 

    I will get back to you about both aspects . Hope your resting a bit now after a difficult day .

    Take care. 

    Court 

    Community Champion Badge

  • Amazing!  Thank you so much means the world right now.  Yes definitely drained - look forward to hearing from you with more to read.  I’m avoiding Google as advised!  

  • Hi ,

    Sorry to hear about what you are going through. We only have the one son but he is rather more used to hospitals than we might like at his age!. I am glad you have talked to your children, our guide on Talking to children and teenagers I found quite helpful. My wife's cancer is very different and one thing we struggled with early on was quite a lot of books talk about cure - not currently a possibility for us - but we have achieved stability and that works for us! We were also lucky in that we have had really good support from his schools and we also have a very special family who were always there for us.

    Hope some of that helps.

    <<hugs>>

    Steve

    Community Champion Badge

  • Thank you for the recommendation - I will definitely look into it.  I’ve contacted my daughters school - her favourite teacher is going in on her day off to be there for her!  So amazing.  My son is at uni so I think he will need to go back and be with his mates for a bit to process…but it’s back home for the summer soon and he’s the one struggling the most with the news.  Anyway, thank you for sharing and my thoughts are with you and your family.  I will deffo read up.  Mine is also contain and stop the spread at the moment.  Take one day at a time I suppose and keep the faith.  Hugs xx

  • Hi , sounds like you are processing this huge shock well and you have a good mindset, doing what you can to stay healthy.  I had cetuximab and its different to chemo as it affects the outside of the body!  You may find you get a few spots or dry patches of skin which can become sore so start moisturising, they will probably give you something at the hospital but Aveeno baby is good for sensitive skin.  The skin around my nail became sore and a little nick would take ages to heal.  You probably won't notice too much at the beginning as it can build up.  On the whole though, I found it tolerable.  It's a very costly drug and very powerful, it started working for me straight away and on my first scan it had shrunk my tumours by a third.

    I kept very healthy from the start, I stopped drinking and am still teetotal, I exercised when I could, even just a walk outside and I had a smoothie every morning with blueberries, spinach and whatever else I could find, a nutribullet a great for chucking everything in, especially if you don't feel like eating much on the odd day.

    I asked a liver surgeon what I could do and he said the liver loves protein so I had a protein shake every day, another good one if your appetite is suffering.  You can pick up a tub of powder and a shaker and just mix with water and pop it in the fridge.

    All the treatment was tough towards the end, I was on chemo from Dec to Aug but it got me to a liver resection and the liver surgeon said my liver was top notch!

    Good luck with it all, you have the same motto as me, one day at a time. Be kind to yourself and rest when you need to.

    Michelle xx

  • Hi Sorry to read your post, it resonated with me so I felt I needed to reply. I was diagnosed with (at the time) inoperable colon cancer that had spread to my peritoneum last August and underwent 7 cycles of chemotherapy, which took me up to February this year. The chemotherapy worked AMAZINGLY well and an operation was then viable. I had major surgery at Basingstoke hospital in March this year - the results of which were that everything removed was benign bar the two sections of bowel that were Stage 1…this was due to the chemo having been so effective. I have three children - 16, 14 and 9 years and it’s been tough on us all BUT kids are resilient and with my older two we kept a dialogue open and tried to be honest, keep them in the loop and involved. People brought me books and obviously I googled stuff - never do this! In the end I worked out that this was my story and it would be written one day at a time.  Just keep putting one foot in front of the other and make sure you have something to look forward to, mine was a weekend away with my boys or a catch up with friends. My appetite was never really effected so I just tried to eat healthily. I have been advised to take Vitamin D supplement as that was something I was deficient in and is linked to bowel cancer. I really believe it’s important to try to remain positive and try not to OD on too much information. Wishing you all the best X

  • Hi 

    What a wonderful inspiring post . I was reading one of your early post last night before you started treatment . Thank you so much for coming back on to share . 

    Take care ,

    Court 

    Community Champion Badge

  • Star74 thank you.  I have bought some cream today and have started packing my bag for my stay in hospital.  I’ve been reading up on the treatments and I think I’m also having Irinotecan which the write ups of sound horrific.  Did you have this too?  One day at a time, one foot in front of the other-I cannot thank you enough for your replies xx