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. 

  • KellyAnn77 thank you for your post very re-assuring.  I have been doing the same trying to show my 14 year old what a pic line is and talk around the medications in brief (I don’t want her googling anything as I’ve done it and it’s scared the life out of me and I need every drop of it at the moment!) 

    My son has gone back to university as he can keep busy and be surrounded by people which is right for him - although I miss him that would be the case regardless of what’s happening next week.  

    there is a part of me that’s scared to have faith as I’m still terrified it does not work, but I will do what I can to keep well and take one day at a time.  Your story is inspirational and there are no words I can say to express how happy I am for you and such an amazing outcome - it’s what dreams are made of!  

    please pop by and keep us all posted on the next steps or tag me in any posts - I’ll be looking out for updates!  All the very best and thank you again for sharing xx

  • Hi , yes I had irinotecan, I didn't find it too bad at all, they will keep a very close eye on you when you are having the infusion and will be checking temp, blood pressure, etc so just let the nurses know if you feel unwell.  I think this is the one that can cause stomach cramps, if it does there is an injection you can have before the infusion, I never had any and I don't know many that did.  They can also lengthen the time of infusion to lessen the side effects from 1 hour to 90 mins.  Everything will be assessed after your first infusion.  Try not to be scared by the long list of possible side effects, you're unlikely to get all of them, I'm sure you will sail through it.  Once the first one is out the way you'll feel much better.

    They will also give you a 24hr phone number to call when you are home, you will need to check your temp at home so add a thermometer to the list if you haven't already got one!

    As you are being admitted you will be under the best care and we'll looked after.

    All the best.xx

  • Thank you Star77 much appreciated.  Yes, today I’m focusing on best smoothies for T cell generation and more research on liver health (thank you for the heads up on that one) I’m fairly healthy but I’m very overweight because my food choices are not always the best!  Did you take any multi vitamins or supplements?  I need to be able to have control of something - although I still have to look after my parents so that’s definitely a distraction.  Am currently on Amazon looking for a new thermometer!  Thanks for the reminder.  

    have a great Sunday xx

  • Brilliant , sounds like you're on the ball, good to do some research and I know exactly what you mean about being in control.  I def found (and still do) a healthy smoothie is a great start to the day, feels like you're doing something.  

    As for multivitamins, I did continue to take them but it might be worth mentioning it to your team as some prefer you not to as it can interfere with the chemo.

    Your liver can take a bashing so good liver health is important, hence why I now enjoy a blue becks or a nosecco on a weekend!!  

    A distraction is good, the boys and school runs kept me going each day.  Although don't take on too much as there will be days when you won't feel like it.  Have you got help to look after your parents?  

    Xx

  • Hi Star77, it’s a bit complicated.  Mum is disabled and has MS - had stage 4 melanoma given 2 rounds of immunotherapy was told it wasn’t working and was told 4 months to live.  6 months later, demanded a re-scan as mum was doing really well and she was given the all clear.  Then diagnosed with stage 2 breast cancer.  It’s the ms which is more of a limiting factor,  my dad, however has stage 4 pancreatic cancer and he’s about to start a trial as the chemo has stopped working.  He’s going to be put on the same stuff as me so we will be working with Macmillan to co-ordinate our treatments so we can be together.  My brother lives in Chelmsford, he comes over at weekends and will continue to do this.  Luckily my husband will be about too - so can drop us and pick us up.  One day at a time, and keep the faith.  What more do I have really?  Thanks Xxx

  • Oh my goodness, you have been through it.  Such crap timing for you, you deserve a break.

    That's good your brother will be around at weekends and you have hubby to help out.  It will be good for you and you Dad to have the companionship going through this.

    You've got this, you're made of tough stuff.  One day at a time.xx

  • That’s a lot 

    Sending you lots of love and support . That is quite a remarkable response your mum had . Hoping it’s in your DNA and you will do the same .

    Let us know how you get on .

    Court 

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  • thanks star77 - I’m beginning to freak out about tomorrow especially reading the doctors letter that came today to say me being a candidate for the immunotherapy is not confirmed.  So scared all over again when I thought I was feeling so in control !

    court, god I hope so…one of my besties came over today with a hospital care package of bits and bobs and I cried a lot.  So did she.  Tummy hurts today but think it’s because my tummy is in knots!  Or the cancer.  Probably the latter..but hoping it’s not.  

    waffing now sorry.  Don’t really know what to do with myself!  

    xx

  • Oh it's horrible isn't it, you'll feel much better when you've got the first one under your belt.  My chemo nurses were so lovely and really put me at ease.  It helped a lot when I was in the chemo unit and looked around at all the patients relaxing and joking with the nurses.  Have you got something to watch/read?

    Ah that's thoughtful of your friend, mine did that too and there were tears!

    I would imagine they are still waiting for biopsy results before they confirm the immunotherapy as its not suitable for all?

    Best wishes for tomorrow, big girl pants on, you'll smash it.xx

  • Hiya, yes downloading stuff as we speak - I’ve work to do also so will try and keep busy.  I’m not good when I can’t roam haha!  That’s right, still waiting for the results so also scared that it’s the same with chemo.  

    Yes you are right, big girl pants definitely needed.  Thank you just what I needed