New to forum and need help with stage 4 colon cancer

Hi NMoy and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

You might also like to join the secondary liver cancer group as you may find people there whose bowel cancer has spread to their liver.

If this is something that you'd like to do, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

While you're waiting for replies, it would be great if you could put something about your husband's diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi NMoy 

Welcome to the forum . Happy to share how my mum was treated with a spread to her liver .

Diagnosis was back in 2009 . She had five mets with one being 5 cm . She went straight to chemo and that worked great . Not going to pretend it was easy or that I understand the following but when a person is chemo responsive it works well on fast dividing cells . Her tumour literally shrank off the screen and she made it to surgery after a few bumps along the way . She ended up getting 73% of her liver removed at a centre of excellence . It remained clear , but she did have a spread later on in her lung . But her liver regenerated well , functioned well and did not give her any further issues . She passed last year, making it to 82 .

Very frightening experience at the beginning but despite a difficult diagnosis she did very well and we all enjoyed many great family occasions after it .

Hope your husband responds well to treatment ,

Court 

It's late so I will be quick. We were as shocked as you.stage 4 colon. Didn't know where to put ourselves it was hell. Nearly sold the house our mental state was in tatters. It's hard but after being told my husband had 6 months. He is still working and here after 3 years.There are many treatments many side effects .Some will be hard there will be times you think the worst unfortunately  it is a bumpy ride. Talk to macmillan and your onoccologist before you get into a worse state. Hope this helps.

Dear SylviamarieB

Many thanks for sharing your experience with me. At thr moment hubby is still waiting for colonoscopy biopsy results and going for his MRI scan on Tuesday to see if liver cancer had the same markers as the colon. If yes, then next step is yo discuss treatment plans. If not, liver biopsy then treatment plans. See like such a long wait via NHS as they can only do things a step at a time instead of doing all scans and biopsies at once! We fear more wait more spread. Did explore private route but wad told better off with the NHS as hubby on fast track. Private too have to wait...all the wait is worrying and stressing us out.

Was wondering if you could share what treatments your hubby have gone through as we know surgery not an option for now. I have been reading about HAI, SIRT and chemo and HAI seems promising but unsure if available in our local hospital in Harrogate. So much uncertainties, no chance to speak to colorectal surgolepng nor oncologist have made us very anxious, nervous to a point if total meltdown.

If you or anyone in the forum may have experience with NHS and private treatments, please share which may be a better option. Living in the North may be disadvantaged as most private care seems to be mostly based in London. Read about Royal Marsden private but when contacted them, they say have 2 to 3 weeks wait just to see consultant and this too is only after we have obtained all the biopsies results.

Please help share some light with us with my heartfelt thanks to both ypu and to those whom have responded to my post in this forum.

NMoy

Hi Court,

Many thanks for sharing your experience with us which is greatly appreciated. I am very glad your mum lived a very long life despite all the challenges.

Ypu mentioned chemo, are you able to share which drugs were used for her treatment? We're there any other treatments besides chemotherapy?

Liver surgery may be lookng likely fir my hubby if treatments can start soon and if chemo can shrink his tumour in his liver as there are 3 very large liver lesions. Did your mum do liver surgery privately or via NHS as you mentioned about centre of excellence? 

Apologies for the many questions but if you are not able to share, it's ok and understandable.

Nmoy 

Can't recall the names of the chemos he's been on but it doesn't matter because everyone tolerates them differently. If you have the right marker immunotherapy will be offered along side chemo possibly with a port fitted and a bag connected  for 2 days. These things aren't ideal by any means but these treatments  are your friend. My husband had to have his treatment changed due to reactions. They don't give up as there are many options for colon cancer he's now on stervarga. Don't search the Internet you won't get what your looking for and inaccurate information. My husband had massive tumors in his liver, also tumors in his lungs and colon. They shrank phenomenal on the treatment. The macmillan nurse should come to your home and give you a talk that will settle you. This needs to happen ASAP. We were absolutely devastated now we have learned to live with it. Support each other go out have a coffe make sure you function  I know where your at but don't think it's the end because it's probably far from it x 

Hi  NMoy 

My mum was on Oxaliplatin and cap tablets for six cycles back in 2009 , then another six in 2010 . Then she only had surgery until two years ago and due to her age they used Cetuximab for ten months .

There are around seven centres of excellence in the U.K. for the liver . They are easily identified by a google search as they also do lung transplants . Definitely recommend them , found them to be excellent.

Please ask anything you feel would help .

We are only sharing experiences and it can help formulate questions for your husbands team .

Take care ,

Court 

Hi Court,

Can you pls help confirm the 7 centres are Cambridge, City of London, Convergence Science, Manchester, Newcastle, Oxford, and Scotland (Edinburgh-Glasgow?

As none are near us, would you be able to help advise when patients undergoing cancer treatments, would it be too stressful to travel long distances? I am so worried as there are so many considerations and I have to make informed decisions before hubby's treatment starts. Having saud this it's so difficult to juggle between trying to find a good hospital while mindful with more wait, thr cancer in his liver may continue to multiply rapidly. I feel so hopeless!

 Any help deeply appreciated as I am in a limbo.

Hi , 

The Scottish one is in Edinburgh .

https://www.odt.nhs.uk/transplantation/liver/liver-transplant-units/

This link shows some of them . St James in Leeds come up a lot too and there will be other hospitals doing liver surgery they may not be centres of excellence but they may do a lot of liver surgery  . Your oncologist will be able to say where they refer and to whom !

My mum actually had her first surgery at teaching hospital in Glasgow. The same surgeon did her bowel and liver . But the more extensive surgery was through in Edinburgh. She had around six weeks off after chemo before surgery and was back to good health before it do travelling was fine . It was a same day admission in Edinburgh so she stayed in a bb . We then took turns travelling to see her daily .

But it was manageable .

Take it one procedure at a time . One appointment at a time . The hospitals communicate with each other and specialist nurses guide you with the practicalities too . You are not on your own .

Takd care ,

Court 

Hi NMoy 

My oncologist initially recommended FOLFIRI with Cetuximab with 5FU as I can't to Oxiplatin due to pre-existing nerve damage issues. He then adjusted his recommendation to FOLFIRI and Panitumumab delayed 5FU.

In the end both options were then withdrawn as my base level decline in health meant I wasn't strong or well enough to attempt any.

I've since been getting excellent palliative care and enjoying life with the best level of quality of life that is on offer. It's actually a wonderful relief not be needing the hospital all the time and to get to maximise the fun in my last months.