Folfiri

Hi 

Welcome to the forum ! I am so sorry to hear about your diagnosis. If you click on my user name you can read my mum’s story as she navigated a stage 4 diagnosis with a spread to her liver . If it’s any encouragement to you my mum used a combination similar to the one you are using xelox and that’s all she ever used over two years and it gave her a lot of shrinkage! Enough to get to surgery !

My mum had five tumours in her liver spread from segment 4 through to segment 8 . The shrinkage allowed for 73% of her liver to be removed! No idea how they decide the amount but that’s what we were told with a bit of creativity around some troublesome blood vessels ! The centres of clinical excellence in the liver are very good and really turned things round for my mum but so was chemotherapy! It really was the game changer !

Totally understandable that you are frightened. The only way I processed it as a relative was to think of the chemo as healing arrows heading straight to the tumours ! Limited I know but it’s how I dealt with it !

Hope it’s the start of turning this around for you !

Court 

Hi Court, thanks for your reply. I’ve read your Mum’s story and it’s so positive. I’m so hopeful for a good response to chemo, everything crosse. I believe I have two areas in my liver but I’ve asked for no more info than that. I’m only 40 with 3 children and just can’t cope with facing a timeline over my head, just want to know treatment plan and that there are options for me. Options = hope!! 
im so frightened of asking questions because I know the answers will be Frank and direct and also very difficult to hear. At the same time though is not asking the questions the right thing. This journey is so hard. 

You sound exactly like my mum She kept herself well by focusing purely on treatment and health . She kept herself away from all things negative whilst on treatment where possible ! She started each oncologist visit by telling them not to refer to a prognosis as they could not predict her individual response but also thanked them for being her dr and taking good care of her ! It was not something she could or would entertain! 
She was not sugar coating anything she was finding a way through her situation ! Knowing what works for you can only be a good thing !

Two tumours sounds more positive . My mum has seen off over ten liver mets in her liver and it’s remained clear for over ten years ! 
You will be busy with three children but they are also a powerful motivator!

You have a good treatment plan . It has to be tolerable for you , it’s a marathon not a sprint and for this stage in the process that’s sufficient!

I noticed my mum paid attention to the details as it unfolded and she needed to engage with decisions! Not before the time . Other people are different and needed the details like me ! I practically read journals from one end of the globe to another to get a plan b ,c and d in my head ! My mum felt no need for that but trusted that she could find the right information when required !

She did however pay attention to finding time to sleep or do projects as she felt able ! 
Have you got support to help with your children if needed ?

Even a small walk can be beneficial. Some research currently on the go around even light exercise !

My mum is far from alone ! I am in touch with many people who had a spread to the liver around the same time as her ! Back then there were fewer options and getting referred for a surgical opinion quite challenging! I initially stayed her to encourage people to speak to surgeons ! I don’t need to do that now ! Many more targeted treatments have emerged !

Bowel cancer is also in a more positive position than some other primaries as it is prevalent it has more chemo options !

Take care ,

Court 

Hi SJJ, sorry to hear your diagnosis. You are probably better to go with the Oncs advice and take Folfiri asap. 

I would advise you ask if Radio Frequency Ablation or cyber knife could be considered. I am currently on Folfiri having had 6 of 12 sessions. Due ct scan results this week so I will let you know if I think Folfiri works. My initial chemo was Capox which shrunk my 4 lung Metz a little. 

Depending on your specific type of cancer Avastin (with or following Folfiri )may give better results. 

It is really hard to tell if you are getting all the options from your Oncologist, so just ask what are all the options. What if Folfiri doesn’t work? What will they recommend? 

Try and agree a plan with them and go for it. 

Good luck RogerM. 

Thank you. Your advice is so reassuring, especially ‘marathon not a sprint’. This torture of waiting to get to the treatment plan just breeds the thoughts of the worse and wanting a quick fix. I’m slowly getting my head around moving to the more positive side of thinking and realising I’m in this for the long hall! 
great to know there are also more options out there for me to access. I’ve read a lot about other patients reaching out to liver centre of excellences who have proceeded with surgery even when the original diagnosis was made as inoperable. This makes me very hopeful! 
I’d still really like to hear off people who’ve been on folfiri for their feedback and hopefully that will happen in good time.

one question re your mum - (I know we’re all different), was she suffering from the liver pain and feeling quite unwell around diagnosis time? I feel like I have no quality of life at the moment but have definitely had a word with myself to just do a little more in the day despite being uncomfortable! 
really appreciate your help ️

RogerM - thank you. I will absolutely explore these options when the time is right. This group is great for picking up some good knowledge. Really hope the folfiri is doing the trick for you ️

sorry to hear your diagnosis
My brother is about to start folfiri and panitumubab. He is scared but anxious to get going with it. 

Sorry to hear about your brother, I’m feeling scared too, just need it to do it’s thing

Hi

Despite my mum’s significant spread she actually did not have a single symptom ! I think it might have been due to the fact she was not actually anaemic ! I think it just depends where the tumours are actually growing in the liver ,  the location that triggers pain or not ! Despite being sizeable they never even gave her a single twinge ! 
A lot of people do report it though and some even report starting to feel better when chemo starts and the symptoms start to ease !

I thoroughly recommend reaching out to a liver unit as the surgeons know best what they can achieve and have their own MDT meetings !

Best foot forward as my mum likes to say !

Court 

Hello ... I know from experience how crusing it is to hear that surgery is not an option the moment, but you have to trust that they would have had several dsicussions about your case in meetings with several doctors and specialists. I was diagnosed May 2021 and was told inoperable... I was given a stoma bag to bypass my large bowel so I coud get on with FOLFIRI chemo without interruptions. I have had 6 cycles and a re-scan on the 18th of sept... I saw my oncologist on the 23rd and the tumour in by bowel had shrunk so much it was not visible on CT scan... and the metastasis that causes my urinary issues is shrunk significantly too, so much so that now I will have the option of surgery. I had a PET scan last week so they could check there is nothing hidden that they couldnt see on normal Ct and meeting my oncologist on thursday when I hope we will discuss surgery and how quick... Like you I am 40 with young children but I found FOLFIRI tolerable, but of course everyone is different. Just because they say inoperable now, that doesn't mean it wont change. Ask questions but also take time to assimmilate information and take one step at a time... Like Court said, it will be a marathon not a sprint. Best wishes and keep us posted onn how you get on. xx