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Stage 4 bowel cancer

emilyrose

Only option is maintenance - advice please!

My Dad was diagnosed with stage 4 KRAS mutant cancer in September, he was told he was inoperable and started on FOLFIRI. His side effects have been minimal, he's feeling good and all his vitals showed improvement. He is keeping fit and healthy and still climbing mountains - despite the first consultant we met at the local hospital being really negative and surprised he would want to carry on with those things (hence a change to Christies - Manchester). He had his halfway scan results yesterday which showed that there is a significant improvement, all of his tumours have reduced quite drastically, however the next part of the treatment plan is still 'maintenance'. As he is being treated at Christies, we know we are in a really brilliant place and he is happy with the treatment, however it just feels a bit deflating that this is all that is being offered currently. Does anyone have similar experiences or advice? I am considering asking for a referral to the Basingstoke liver team (liver mets have reduced a lot but apparently still too many - more than 5 - to operate) but don't want to only focus on that. I also want to look into Avastin, but obviously it's so expensive and as he only has 4 treatments left on FOLFIRI, I'm not sure of the added value of it. Thank you all for all of your support so far, you're all truly inspirational and your advice is invaluable :)

Em :x::x::x:

Lirio345

Good morning @emilyrose, your Dad is doing really well and is responding well to chemo, which is terrific news. Many on here have been told they are inoperable only for the situation to change although I don’t get the impression that your Dad is quite there yet (but I am not medically trained).

My liver mets disappeared totally after 12 sessions of Folfiri and Cetuximab.

Maintenance chemo is a relatively new way of treating stage 4 Bowel cancer but is proving to be very successful for some. I for example, have been on Folfiri plus Cetuximab for four years, and there are several others on here in a similar position. I see Maintenance chemo as a positive thing, - the equivalent often quoted is type 1 Diabetes where people have to have insulin to keep them alive, but do lead reasonably normal lives.

My inclination, but see what others think, is to wait until your Dad has finished the next four treatments before making decisions together.

Take very good care, Kim :x::x::x:

emilyrose

Thanks @Lirio345, this is really positive to hear and I will be passing the message on. I've read some of the other threads too and feel more positive after that. Will keep remaining positive and taking it each step at a time, when we think too far ahead, that's when it becomes very overwhelming, right?! :x::x::x:

GD62

Hello @emilyrose

Similarly, I am KRAS Mutant and only have access to standard chemotherapy after having had CRS/HIPEC with a peritoneal and liver met. Hence, due to recurrence in the retroperitoneum and liver, have been put on folfiri, due at Christies for CT scan review after six cycles of folfiri, my CEA has been 1.0 for last couple of months, have had four week break for renal stent, but will just have to see where it goes, would be happy with stabilisation...good luck :x::x::x:

Bear G

Hi @emilyrose
Welcome to the forum.
I'm a KRAS mutant stage 4 patient too, just like your Dad I had mets in liver and lungs when I was diagnosed. Here I am 6 years later and still going strong, I've been on maintenance chemo for over 5 years now and last year became No Evidence of Disease for the first time (for the full story please click on my name).
Bug hugs
Bear
:x::x:

emilyrose

Sorry to hear about the recurrence @GD62, but glad your CEA levels have stabilised, good luck with the scan results too. I followed your story and you're approach to it all has been really inspirational :) Best, Em :x::x:

emilyrose

Hi @Bear G I've actually looked at your story before and it gave us so much hope when my Dad was first diagnosed. I didn't know that you were KRAS mutant, that also gives us hope too :) I've been looking into Avastin, my Dad doesn't have private health insurance so would have to self fund, is this an avenue that you have gone down, or are there ways of getting it on the NHS? Another question I have for everyone on maintenance is how you go about going on holidays etc. My Dad has been told that he will have it every 2 weeks, and have the pump for 72 hours. He's desperate to get away but isn't keen on taking too many breaks, how have you managed with that?

Thanks again for all of your comments and support,

Em :x::x::x:

Baxter2

Hi again @emilyrose

Like @Lirio345, I've been on continuous chemo (Folfiri and Cetuximab) since Feb 2016 with a six month break for a liver resection and Cytoreductive surgery and HIPEC at Basingstoke. Fortunately, I tolerate it pretty well and manage to live life to the full as much as possible. I was initially given a very bleak prognosis at the beginning of 2016. My last 3 scans have been clear so long may that continue! There's lots of hope for your dad. If there's been significant improvement evidenced by his last scan, where's the harm in asking for a surgical opinion from the liver team at Basingstoke? I had a brilliant surgeon there!

Keep us posted if you can?

Lots of love

Karen💛💜💙❤️💚

Bear G

Hi @emilyrose
I was lucky that I’d paid into private insurance for years and that’s covered me throughout.

In terms of avastin, I’d suggest taking to your Dad’s consultant about it as an option. If he thinks it’s worth it he could apply for it through the nhs as a sort of exemption. If that didn’t work there’s the option of doing an nhs top up, this varies greatly between trusts as to how they run it and how much they charge, there are separate posts on this.

Regarding holidays etc then it’s a routine thing on maintenance chemo to take ‘chemo holidays’. This is one of the big differences between intense and maintenance chemo, please reassure your Dad on this. I take breaks from treatment for things like holidays, Christmas etc as well as if I feel the side effects are building up. I talk about this in the podcast series that’s just come out, not sure if you’re podcast listeners.

Big hugs
Bear
:x::x:

emilyrose

Hi again @Baxter2

I actually rang the hospital and they suggested going through his GP for a second opinion, I think we will just tell the Christie that we would like that team to look at his scans, though. This thread has given me a lot more confidence in going for maintenance, however I still want to make sure we have explored all avenues! Of course, I will keep you updated, realise that I should probably update my bio properly as we are in this for the long haul :)

Thanks again,

Em :x::x::x:

emilyrose

Hi @Bear G ,

Thanks for your advice about Avastin, everything I've read so far seems so varying, so will just ask them. Would you be able to direct me towards the podcast? Maybe the ideal thing to listen to on my commute to work! We're looking at booking a holiday for May to celebrate his birthday so it will come in very handy :)

Hope you all had a good weekend,

Em :x::x::x:

Bear G

Definitely have a chat with them @emilyrose
There are 3 podcasts just out as part of my friends Mindset Unfiltered series, each discussing different aspects of my life since diagnosis, I hope they help.

Season 2 episodes 4, 5 and 6
www.buzzsprout.com/692482

Big hugs
Bear
:x::x:

emilyrose

Hi @Bear G , I've listened to them all and also the ones with George Alagiah, so much useful information and inspiration (that cringey word!) that I'm really looking forward to sharing with my Dad.

Thanks again,
Em :x::x::x:

Bear G

Thank you @emilyrose , so glad they're of help.

Big hugs
Bear
:x::x: