Palliative chemo

Hi Susan, I'm so very sorry to hear what you going thorough. I unfortunately don't have any useful information to share, just wanted to send you a virtual hug. x

Hi Susan13 

so sorry to hear your news - my husband was told in November that he would have to go on palliative chemo after spreads to his liver & lungs - this was after APR surgery in September. He started FOLFIRI this month and will he having his 3rd of 6 on Friday this week (2/1/26)  weeks have been reading lots of posts where people live WITH their cancer for many years.  Look up ‘Strive for Five’ Steve is on Facebook & has web page - hes been living with stage 4 bowel cancer for 14 years ! That was after a 6month prognosis.  There is always hope ️ sending love and positive vibes to you alongside a massive virtual hug! 

Bx

Hi Susan. I’m so sorry to hear you’ve had such difficult news. I’ve no experience to share but wanted to send you a virtual hug and lots of positive energy. There will be a path forward - just not the one you had prepared yourself for. Take care. 

Thank you Bella! Of course I remember when your husband got this news. So close to home. It's funny how much more hopeful I felt for him than I feel for myself! Easy to hope when it's not personal. 

I appreciate your response it reminded  me I'm not alone. Thank you also to everyone who took the time to respond or react. I think the worst part is feeling alone.

Thank you!

Hi Susan13 

Have a look at Star74 

profile as well. She has had a few bumps along the way but still out there enjoying life with treatments part of it .

My own mum was classed as palliative for 15 years , in and out of treatment . 
She was not alone . I have been in touch with many patients over the years doing well despite a difficult diagnosis and to be honest they had much less treatment options than now .

But take your time to find your feet . It’s a blow to expect one plan and be put on another . But I do attribute chemo for my mum’s longevity . Surgery feels more of a solution. But chemo can be a powerful tool . Take the time you need to work out what’s tolerable for you . They often say it’s a marathon not a sprint with palliative care . You are working out for the longer run .

You may also hear the drs language change as time goes on . The focus is to gain stability and possibly shrinkage and whilst you may not appreciate it now some normal life can creep back in .

It’s a toe by toe journey but my niece gave me a drawing she had done for my Christmas . My 77 year old mum up the ladders at the front of her house , painting under the roofline  , ten years into palliative care . She did a lot of living in the mix . 
Hold onto that !

Take special care ,

Court 

Here is a wee visual to remind you of others that lived a good life despite a difficult diagnosis! 

Thinking of you Susan, such tough news when you have been through so much already. Sending a hug your way xx

I know these positive stories are out there. It was such a blow to find myself there. This is still a Stage 2 cancer! It's not supposed to be this bad!

I just need to find my feet. I'm already a little steadier than I was. 

Thank you for responding I know you've told your mother's story many times but it is somehow special here and now. 

To be honest I am not sure . Stage 4 is normally reserved for cancers that have either a lymph node spread or spread to another organ . Locally recurrent can be invasive of the structures around them but not reach the lymph nodes or organs . Whilst they may have similar treatment pathways so does stage 2 . Your oncologist can let you know for sure .  
I think they might classify that as stage 2 recurrent !

We never bothered too much about the staging as we felt it was more beneficial for health economists in terms of funding for treatments planning than mum as an individual.

I think the thing to remember it’s a starting point for treatment . I am sure Star74 had treatment which opened up further options with a recurrence in a similar area .

I am so pleased you are  stabilising within yourself .

We have seen tumours shrink right back and other options open up so hold on tight and I wish you every success with your treatment .

i am like a broken record here but it’s important that people know some people have a few recurrences but still do well .

Take care ,

Court 

Hi Susan13 

Firstly, Im so sorry you find yourself in this situation, after such a huge operation, we pray and hope thats the end of it and it's such a blow when it isn't.

Your story takes me right back as its so similar to mine. I had TPE in 2022, it was a huge op and long recovery, unfortunately I had a reoccurrence where they operated (they call it a reoccurrence but im sure they missed something maybe not visible during the first op).  The surgeon called me in and agreed to operate, I had a TPE re-do the following year, another huge op.  Unfortunately a few months later a reoccurrence was found in the pelvic area.  I had an appointment with my surgeon, at this point we are very well acquainted, first name terms and a goodbye hug!!  Drove over an hour to get there, expecting to hear details of the next op, surely he wouldn't make me go all the way there for a "no", he'd just call me.  I sat there and there were 3 trainees staring at me when he broke the news that an operation was not an option.  Completely blew the wind out of my sails.  The team didn't feel like another major op so close to the last one would be the right decision and after 2 reoccurrence's i needed to go onto palliative chemo.

As I dont have any mutations, I went back on folfox for 12 cycles and we added in cetuximab.  Ive been on just 5fu and cetuximab for over 2 years now, im over the moon to report that my last scan showed no active cancer.  My next scan is tomorrow so Im hoping it continues.  Its scary to think about the future so I try to just stay in the present, one day at a time.  I have a very fulfilling life though with a 8 and 11 year old keeping me busy.  We have holidays as often as possible, it really helps me to have something to look forward to and although things haven't worked out as I had hoped, I still consider myself one of the lucky ones.

I really hope you have a good team in your corner, my Onc is great and the reason ive just got to 5 years since being diagnosed.  And, just because they say surgery is not an option right now, things can change, never give up hope.

Michelle x