How many years are you on your journey?

Welcome ThisIsJustGreat ,

Can I just say reading your husbands story I was overwhelmed by his grit ! And it does take a lot of grit to continually face treatment on and off and learn how to live life to the maximum .

My own mum was diagnosed back in 2009 with a spread to her liver . The first two years were the most intense of one step foreword , two back . But then she caught a break . The explanation that sat most logically in my mind was her lung surgeons . As she had a lung met in year seven although her primary had been removed in 2010 . He said it was all part of the original spread when those cells broke off from the primary tumour and lodged in another organ as micro disease . Then surfaced . By far the majority of her disease revealed itself in the first few years which felt a bit like whack a mole ! For her it then slowed down considerably and living with a chronic condition became more of a possibility . You can read her full story by clicking on my name . Others are before her on the site and we’re doing well but stopped posting . Mum diagnosed at 67 is now in her 80 s but only a teenager in cancer terms but this group are encountering other life illness but we are grateful to get to them !

Over on Bowelcancer U.K. you can read some profiles of people currently on continuous treatment using the combination your husband is going onto . They are doing very well at around the seven year mark and one around the nine year mark . However over on the American sites I have followed people up at the 16 year mark where they are off living a good life . Some stage 4 patients are fortunate to need only small intervention initially but most I have followed had an intense few years to begin with . 

There are many , many people around but not posting now . I think I’m lost of ways that’s healthy . I stayed to tell my mum’s story as I needed to hear it back in 2009 so badly . You just need to know some people are still enjoying life in the midst of it .

Bowelcancer U.K. has a stage 4 Facebook page and some younger contributors I think ( I don’t use it myself ) but I do think it’s important for families to see how each other are facing the challenges. It reduces the sense of isolation .

Your husband is clearly chemo responsive ! Half the battle . One thing that helped me over the recurrence periods . I thought there was less spread each time than was there initially so she slowly chipped away at her tumour mutation burden each time . As they say there are many steps to Ned in a stage 4 setting definitely a marathon not a sprint .

I think as a carer you need that Hope within boosted from time to time too .

You are doing an incredibly job too and an incredible person as this is hard .

My mum usually celebrates the big mile stones by sea kayaking with a lot of assistance but has hurt her back just now so we need to give her time to recover but we fully expect her to at some point .

Take care ,

Court 

Hi ThisIsJustGreat

Welcome to the forum . Reading your post I am overwhelmed by your husbands grit and determination. You definitely need both in a stage 4 diagnosis.

Even in a stage 4 setting there is a sub group who continue to do well despite a difficult diagnosis and prognosis. My mum is doing her very best to push those stats in the right direction .

You can click on my user name to read her brief history but back in 2009 she had a stage 4 diagnosis with a spread to her liver initially then her lung as time went on . Her lung surgeons explanation as it was years after her primary was removed , it’s all part of the origin spread . The parts that broke off from the primary tumour , travelled and lodged in a distant organ . The first few years were the most intense as we waited for the micro disease to surface . Picking her back up after recurrences but each time she had less of a tumour burden and she slowly chipped away at it . Your husband is clearly chemo responsive .

There are others ahead of my mum that I have followed but they have stopped posting . Some are at 16 years on the American boards but lots around the 10-13 years like my mum which I think reflects the changes that have been going on with oncologist practice. Back in 2010 we had to go against her oncologist wishes for liver surgery . Was not easy , and again for lung as it was the surgeon who did not wish to go in hard at that point . The only time she was not inoperable too ! You can imagine . She has had the most wonderful oncologist. Her first post as a consultant, her practice and judgements were amazing . A lot has changed over this last decade . Treatments I had never heard of are now here and surgeons are much more aggressive. I used to say to many people to seek a second opinion and the vast majority would not for years ! A lot has changed on so many levels so hoping this is reflected soon in the stats . 
Bowelcancer U.K. forum has some long term posters that might encourage you and they have a stage 4 Facebook group where you might find some good information. I don’t use it . 

You are doing an incredible job . A lot of stage 4 people have returned to living a normal life and stop posting . I stay here to tell my mum’s story as I needed to have my own Hope boosted back in 2009’ and for a few years .

There are many steps to Ned in a stage four setting as they like to say and definitely a marathon not a sprint .

You are incredible yourself and doing a difficult supporting role . Keep up the good work .

Court 

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/207887/stage-4-hope-11-1-2-years-later/1662317#1662317
This is her a few years ago celebrating her tenth year of her liver being clear ! I think ! It’s all getting a bit confusing .

Court 

One more point as I had difficulty posting today so wrote two !! . 
Clinical practice has changed a lot in the last ten years . My mum’s oncologist at the time did not think liver surgery  was a good option for her . We consulted anyway . That was hard .

Her lung surgeon ( the only time she was actually operable !) had a research project he thought would be good where they observed the behaviour of the tumour . Again that did not sit easy with us so more navigating .

For years I would urge people to get a second opinion , most did not . All these factors contribute to overall outcomes . That has all changed . I rarely say to people now to seek a second opinion as the Clinical practice mostly explore all options . New treatments are emerging that most definitely were not heard of when my mum was diagnosed. Hopefully more will follow !

I kept an eye on the American forums for years as their practice was a little different back then .

I am still hopeful more can be done in a stage 4 setting research wise and hopefully the money Bowelbabe contributed will help push things forward. Big pharmacy in America so I read there too !

We shall keep pushing those boundaries where possible .

Court 

I lost a post , tried again and lost it but twenty minutes later the first one arrived and now the second . Both versions of the same thing ! . 
I will leave them as it is . You get the point . Technology is still a challenge to me .

Court 

Wishing your husband well - kind of hope the prospects for living with stage 4 is more than 5 years -  not really ready to leave my family just yet.  If you are looking for good news stories, go to the bowel cancer UK forum and go on the advanced stage 4 forum…lots of positive stories of successful treatment and life beyond Google’s 5 year plan for us.  Oh I’m on foflori and cetuximab- hair is thinning, skin does get a little sore (creams and pills for that though) but apart from that and the steroid crash, I’m coping rather well on it.  Such a worrying time for you and your husband - wishing him great results on the new treatment xx

You sound as though your doing very well Mizzle88. 
Mum refused a prognosis , but was grateful for the treatment .
Take care everyone ,

Court 

I’m trying to - I’m the same - still refuse to google the prognosis - just so thankful I can be treated.  Hope you have a lovely evening court x  

Thanks for the response - sending you luck and love Mizzle 88! Really have enjoyed the good news stories and they are exactly what we need right now xxx 

Thanks so much for the absolutely superb and encouraging response. Such great news about your mum! 
I don’t know that my husband is chemo responsive, overall I felt the oncologist was quite negative about the chemo he’d had and didn’t seem to think it had made a heap of difference - the main thing was they agreed to chop those tumours out. Folfiri plus Cetuximab are completely different drugs so let’s hope for a good response - I’m guessing the next month is critical in terms of prognosis. I am absolutely desperate for prognosis as huge decisions will have to be made.