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General Discussion

Sallard1

Recurrence

Sadly after three clear scans the cancer has returned. Had surgery & Hioec last April in Basingstoke. Everything seemed to go so well, was only in Hospital 12 days in total and made a good recovery. I had the omentum, ovaries etc, appendix removed and the peritoneal was stripped. Had a fantastic year and done loads.
Now after a Pet Scan it is showing in the peritoneal and small nodes on lungs too. In fact report summarise saying ‘widespread’
Waiting to see Oncologist as my local surgeon saying only chemo the treatment now & guess that will be palliative. I last had chemo Feb ‘17 except of course the ‘Hipec’ in April & it has been wonderful.
My question is - is it worth trying as I read that it’s near impossible to cure cancer there? Or should I just have quality of life rather than quantity? The next chemo regime would be stronger & be every week. I was told which scares me.
Is there anyone out there beat this cancer on the peritoneal please?

GD62

Hello @Sallard1

Sorry to read your recurrence and like you had CRS and HIPEC in December 17. I am having capox post CRS & HIPEC just after liver resection. Expect you will be on chemotherapy fairly soon, I know that one person on the forum Lee is on a cocktail, as is @Baxter2 one of the moderators, which have worked really well for them with peritoneal mets. So please do not give up hope.

Hugs and positive healing thoughts :x::x::x:

Baxter2

Hi @Sallard1 (and thanks for the tag, @GD1962)

I’m sorry to read of your recurrence of peritoneal mets after your successful CRS and HIPEC op last April. I had my liver resection in Jan and CRS and HIPEC in March at Basingstoke too. I was in Hospital for just over a month with a couple of difficulties but I did make a full recovery afterwards!

The plan was always for me to go back onto chemo as soon as possible and that started June 2017. Unfortunately by that time, I had 4 new small liver mets (presumably because of my 6 month chemo break for ops to take place) I started back on Folfiri and Cetuximab and have been on it since. There is now only one tiny liver met left visible, apparently too small to measure! Going back to early 2016, I started on Folfiri and Cetuximab and this had a very good effect on my peritoneal disease as well as liver met. I do believe, it’s this treatment that’s keeping me ‘well’ at the moment and the plan is to continue u TIL it stops working. Then, I’ll be swapped onto something else. I’ve been told ‘chemo for life’so would expect to be on something to keep things in check. I believe peritoneal spread is difficult to cure so I guess control is the way forward?

For me, I want to live at any cost. Fortunately, I tolerate the chemo very well apart from mostly annoying side effects. I have a couple of down days per fortnight (steroid crash) so I plan quiet days to rest up. I never need to spend time in bed for example. The alternative doesn’t bear thinking about for me. My quality of life is pretty good I’d say but I realise not everyone is as fortunate. Please don’t feel scared of chemo. Everyone’s experience is different. You could give it a try?

I hope you come to a decision which suits you.

Lots of love,

K💚💙💜💛❤️

Chris82

Hi @Sallard1 and very sorry to hear about this recurrence.

As @HH79 says I did have HIPEC again though it was actually because of lymph node tumour that looked easy to deal with, and the team at Basingstoke decided to do HIPEC while operating in the same area.

I’m not sure my second HIPEC would be considered a success. It has worked in that I have no peritoneal disease, but like @Baxter2 the break from normal chemo gave the cancer the opportunity to spread elsewhere, to distant lymph nodes.

I am on what we call ‘maintenance’ chemo. After my last recurrence I had 8 cycles with oxaliplatin, and since then (over a year) I have just had 5FU and Avastin, which I’ve been able to tolerate well. My areas of disease have shrunk and are stable. I would argue I am aiming (realistically) for both quantity of life, as well as quality. Yes, chemo sucks, but I don’t for example have any pain.

Hope that helps and you are getting all the support you need.

:x:

jinnyp

Hi @Sallard1 I’m sorry to read of your recurrence, I don’t have advice or much experience but I have liver mets and peri nodules and am hoping for hipec at some stage. Folfox has reduced my nodes so they are not visible on CT and inactive on PET scan.
I just wanted to say Hi and send a hug.
I would say it’s worth trying chemo, you can always change your mind but there are many on here who tolerate forms of maintenance chemo very well and who knows what results you might have?
:x::x::x:

Sallard1

THANKS TO EVERYONE FOR ALL THE SUPPORTIVE REPLIES. I will gradually reply to you all individual-I’m still
Learning on how to write on this web site🤣quote]Quote from @GD1962:
Hello @Sallard1

Sorry to read your recurrence and like you had CRS and HIPEC in December 17. I am having capox post CRS & HIPEC just after liver resection. Expect you will be on chemotherapy fairly soon, I know that one person on the forum Lee is on a cocktail, as is @Baxter2 one of the moderators, which have worked really well for them with peritoneal mets. So please do not give up hope.

Hugs and positive healing thoughts[/quote]

Sallard1

Thank you all for your help with me making decisions.
Yes I’m always so amazed how so many people do go through many rounds of chemo and tolerate it.
I so wish you all well with your continued treatment and I feel such a ‘wimp’ compared to how strong others are.
I have an appointment in two weeks to sort out next plan. Thank you ALL so very much :x::x:

Sallard1
Quote from @Baxter2:
Hi @Sallard1 (and thanks for the tag, @GD1962)

I’m sorry to read of your recurrence of peritoneal mets after your successful CRS and HIPEC op last April. I had my liver resection in Jan and CRS and HIPEC in March at Basingstoke too. I was in Hospital for just over a month with a couple of difficulties but I did make a full recovery afterwards!

The plan was always for me to go back onto chemo as soon as possible and that started June 2017. Unfortunately by that time, I had 4 new small liver mets (presumably because of my 6 month chemo break for ops to take place) I started back on Folfiri and Cetuximab and have been on it since. There is now only one tiny liver met left visible, apparently too small to measure! Going back to early 2016, I started on Folfiri and Cetuximab and this had a very good effect on my peritoneal disease as well as liver met. I do believe, it’s this treatment that’s keeping me ‘well’ at the moment and the plan is to continue u TIL it stops working. Then, I’ll be swapped onto something else. I’ve been told ‘chemo for life’so would expect to be on something to keep things in check. I believe peritoneal spread is difficult to cure so I guess control is the way forward?

For me, I want to live at any cost. Fortunately, I tolerate the chemo very well apart from mostly annoying side effects. I have a couple of down days per fortnight (steroid crash) so I plan quiet days to rest up. I never need to spend time in bed for example. The alternative doesn’t bear thinking about for me. My quality of life is pretty good I’d say but I realise not everyone is as fortunate. Please don’t feel scared of chemo. Everyone’s experience is different. You could give it a try?

I hope you come to a decision which suits you.

Lots of love,

K💚💙💜💛❤️

Many thanks for taking the time to write to me. I have often looked to see how you doing as you were kind enough to communicate with me last year when I was deciding on the HIPEC.
I will take on board all that you saying and yes at the end of the day we do want to live!
You sound a very brave, strong, person and I appreciate you sharing your experiences with me. Like you say I could ‘try’ it!
I guess I got too confident when three clear scans came through & have felt so well on the last year.
I will know more in two weeks when I next see the oncologist.
My sincere good wishes to you & hope you keep well and enjoying life and get more longer breaks from the chemo 💞💞:x::x:

Sallard1
Quote from @jinnyp:
Hi @Sallard1 I’m sorry to read of your recurrence, I don’t have advice or much experience but I have liver mets and peri nodules and am hoping for hipec at some stage. Folfox has reduced my nodes so they are not visible on CT and inactive on PET scan.
I just wanted to say Hi and send a hug.
I would say it’s worth trying chemo, you can always change your mind but there are many on here who tolerate forms of maintenance chemo very well and who knows what results you might have?

Many thanks for taking the time to reply to my concerns. I take on board all that you say & indeed feel a ‘wimp’ when I read of so many are dealing with ongoing chemo so bravely. Yes I could give it a try IF that is on offer. I see the oncologist later this month. I wish you very well & although I have had a ‘set back’ I do not regret trying the HIPEC & can honestly say it was much better than I had ever expected & have enjoyed a year off chemo. Take care & a hug to you too x 💞