Advanced stage 4 bowel cancer spread to liver

I don’t think many people function well at the beginning. It’s overwhelming. Our helpline staff cover the emotional aspects and how to tell family .0808 808 0000. They might give you some assistance.

My mum is now participating in research for long term stage 4 survival . They are looking at the role of TCells and how to boost them . A lot of research on even moderate exercise . It also gives you a foothold to try and take some control back .

Take care ,

Court 

I’ll do whatever it takes and will follow any guidance or advice given - Last year I walked 9 x 50kms walks for Macmillan as my dad has stage 4 pancreatic cancer and my mum, stage 4 melanoma.  I’ve always raised money for charities - I’m also supposed to be doing the marsden march on Sunday, but not feeling like walking really….although it’s all raising money for the charity that will now be treating me I suppose.  I’ll deffo research Tcells - I’m trying to keep off Google as advised!  So much appreciated thank you xx

Yes Mizzle88, they will usually put you straight on chemo when there's a spread, I believe that's the best order as it will hopefully shrink the tumours whilst also taking care of any micro disease lurking.

My bowels were pretty manageable until I started treatment and then when I went for my first infusion I came home with a goody bag of tablets for constipation and diarrhea!  Are you in a lot of pain?

I haven't had chemo since Aug last year, apart from a low dose alongside radiotherapy in Feb.  I was on folforinox and later added cetuximab, the big guns as my onc called it!  Do you know what your regime will be yet?  Xx

My bowels are ok - that’s what got me to the doctors - blood and mucus in stools.  I take a co codamol every night to help sleeping pain but that’s about it.  I have buscopan too in case of need which do take if I’ve eaten too much…I’ve learnt to eat little and often so as to manage the bowels.  I only found out yesterday so am moving to the marsden so should find out the plans for me either this or next Wednesday.  Then I can finally tell the kids.  How did they all make you feel?  I hate to say it but I’m paranoid about losing my hair xx

That's good, you are in good hands at the Marsden, hopefully it won't be too much longer and you can crack on, it makes you feel like you're doing something proactive when you start.

The chemo is cumulative so I got through the first 2/3 cycles without really noticing it too much and it gradually builds up, I just felt pretty worn out. I was still able to do chores and the school run but would spread my jobs over the week instead of blitzing the house in one day!  Any side effect is pretty well managed these days, you can mention it to the team and they'll have something for it.

I didn't loose all my hair it just thinned quite a bit so I got away with wearing caps/hats.  Didn't loose lashes or brows either.  (In fact, my kids didn't even notice although they are only 4 and 7)!  

Xx

Yes  there's lots of us in the same boat sadly.  There is also a Facebook group which is great for us stage fourers if you haven't already joined: Living with stage 4 bowel cancer. 

I hope you are getting on OK with the treatment. Xx

Hi Mizzle88

My hubby was told Feb 28th that he has advanced stage 4 cancer that spread to his liver. He has a 13cm mass in the bottom right lobe.

We were totally devastated, as he had been NED for over a year and feeling 100% fine. His annual CT scan found the mass in his liver.

His oncologist wanted him to have surgery asap, but the surgeons wanted to shrink the tumour first. The reason given to us  is to make sure there is 30% healthy liver remaining after surgery, which would not have been the case if they went straight to surgery.

Today, he had his 4th and final infusion of Folfiri+panitumumab with a take home pump thru a Picc line for 46hrs.

Overall, he's been doing pretty well  dealing with the side effects. He exercises every single day , and he has been eating and drinking well. 

He has a CT scan scheduled for May 30th, and a meeting with the surgeons June 2nd.

We just try to stay positive and take everything one day at a time.

Sue

Thank you so much star74 - very much appreciated.  Your kids are so young too…bless you.  Encouraging to know.  Just need to get to the next step then.  Had a good cry for the first time yesterday ad slept a lot to forget.  Cannot express the kindness felt from you all - thank you ️

There will be tears but you've got this, you will find out you are stronger than you ever realised.  Keep us updated.xx

https://be.macmillan.org.uk/Downloads/CancerInformation/LivingWithAndAfterCancer/MAC12515E05physical-activitylowresPDF20190128HS.PDF

You might like to have a read of this . Even small walks seem to have benefit . 
I thought it would do you good to connect with Star74

My mum is not alone , there are many people ahead of her who I am still in contact with. 

Take care ,

Court