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Beating Bowel Cancer Community

Stage 4 bowel cancer

bigsy

Peritoneal Mets

Hi All,

I’m 40 yr old male who was diagnosed with incurable Colon Cancer back in Jan! I was told
It was advanced and has spread to my peritoneum and omentum. Has anyone else had this spread as it seems unusual in terms of finding other people with it?

Due to the spread I dont qualify for HIPEC and they havent removed any of the Cancer, they performed a bowel ‘bypass’ can’t remember the correct term right now but they did not remove any Colon or cancer just attached part the small bowel to a different part of the Colon to provide an additional route.

I’m having palliative 5fu chemo

On a brighter note I took a break from chemo and am currently on my third week in sunny Florida and have t felt so good in months - it’s making me reconsider the chemo to be honest.

Anyway if anyone has similar experience with these type of mets I’d love to hear from you, my only real issue other than chemo side effects is frequent stomach cramps/pain (its def not a blockage) which I have had for months.

Xx Rob

Baxter2

Hi @bigsy and a very warm welcome to the forum. I'm sure you'll find lots of support, information and friendship on here.

I'm sorry about your diagnosis. You're so young to have to face all of this. There are quite a few of us on the forum who have had or still have peritoneal mets. I had peritoneal and liver mets and had a liver resection and Cytoreductive surgery and HIPEC in Jan and March 2017. I'm still on chemo and I believe this will be indefinitely. I'm on Folfiri and Cetuximab.

Is there a hope of surgery for your primary bowel tumour?

It must be lovely to be in sunny Florida. It's sunny here today but only about 10 degrees 😩

I'm sure there will be others along to say hello and share their experiences.

Sending lots of good wishes,

K💙💜💛💚❤️

bigsy

Hi @Baxter2 thanks for the reply.

Apparently they can’t do surgery on my primary tumour, mainly due to the spread. Prior to surgery they were considering removing the primary tumour and we’re considering HIPEC but would confirm after reviewing during the surgery.

When I came round they told me they hadn’t removed it and the spread was to widespread for HIPEC and they confirmed with Basingstoke. They aren’t intending on doing anymore at the moment but maybe if it did shrink who knows.

I am currently treated at a local hospital but I have just asked for a second opinion from Marsden - I emailed whilst I was out here (lightbulb moment)

Bit worried that my Onc and Dr will be offended but I think I need to make sure no stone is unturned.

Very warm here it has been amazing tbh 🙂

Thanks again :x:

HH79

Hi @bigsy. Sorry about your diagnosis and well done on hols!
So where are you being treated?
Lots who have Peri spread get shrinkage after chemo and then surgery an option. What are you having with 5FU, is it Oxilaplatin or irinotecan? Are you BRAF mutation?

There are a few of us with Peri mets on here. Without wanting to sound ‘naughty’ sometimes people have found a yes at one of the other centres doing HIPEC after a no from Basingstoke. The other place that is top cancer centre in the world after North America is the Christie in Manchester and they do a lot of HIPEC. Imperial in London have started doing HIPEC too for advanced cases. The Good Hope in Birmingham also does it. Sometimes it can be curative but even if gives you a year or so off chemo then a recurrence, still worth doing. You might want to consider 2nd opinion.

Google PIPAC - a procedure for Peri mets been done in Europe and coming to trial at Cardiff this month.

Good luck :x::x:

HH79

Hi @bigsy also don’t worry on 2nd opinions most encourage it if they’re good ones! If you want Amy contact names for any of the hipec centres mentioned do say Or PIPAC pm me ....:x:

Tiffany

Hi @bigsy.

My husband was diagnosed in June 15 with advanced colon cancer. He was described as having an unknown primary (bowel was a good guess) with omental disease and peritoneal mets.

He was on FolFox with Avastin for six months and there was a significant reduction of the cancer. He then moved to Capecitabine with Avastin for three months until side effects worsened but he was declared showing no evidence of disease at the same time. He continued on with 5FU and Avastin every two weeks for almost two years staying clear for the whole time. He has very recently come off all drugs and we are watching and waiting.

He was also told he was inoperable and incurable. If you click on my name you can read the history. I changed everything about our lifestyle and we've never been healthier and feeling very positive.

Willing to chat more if you want to PM me.

Tiffany

Mum37

Hello @bigsy I also have peritoneal mets. I had surgery in Dec 16 followed by Oxaliplantin and Capecitabine but it didn't work and peri mets were too extensive for surgery. I then had 12 rounds of Folfiri but just found out that didn't really work either. Am now having a chemo break and will then start Longsurf. Have also been chasing PIPAC trials in Cardiff.

Getting a second opinion is great. I got a second opinion from the Marsden but then had treatment locally as Bristol to London was just too much with a year old baby. :x::x:

Highkaren

@bigsy I have primary tumour in cecum and secondary to ovary and metastasis to peritinium which like you has made me inoperable. I’m pursuing PIPAC hoping to get a consultation for Cardiff trial soon. Go tackle the peritoneal disease on a more targeted regime. No cancer in liver or lungs

GD62

Hello @bigsy

Sorry to read about your diagnosis, had peritoneal and liver mets and qualified for CRS and HIPEC but there was more spread when they opened me up but they still did surgery. Maybe go ahead with the chemotherapy as I was inoperable and incurable, and a second opinion is certainly worth pursuing.

Good luck and so sorry about your diagnosis again :x::x::x:

bigsy

Hi all,

Thanks for all the replies, sorry it’s been a while.

Since I got back from holiday I started back on the chemo and had a CT scan which showed it had spread since my last scan (now
Spots on liver).

Anyway after speaking to my oncologist we were looking at stopping 5fu and potentially trying Lonsurf but my CEA level went down from 56 to 43 which he said was a good sign so tried again and it’s gone to 41.

Having chemo again this week and will then get another CT.

Is CEA reducing always a positive? My oncologist thought it was a good sign but don’t wanna get my hopes up that it’s stopped growing for a while.

Thanks again all who replied :x::x:

GD62

Hi @bigsy Had spread from my peritoneum to liver too, CEAs can give an indication but it is the scan that counts. Were you KRAS mutant as they don't seem to have offered you immunotherapy. I'm such so was not offered it either but have scan this Friday for first time in eight months. See what happens, good luck :x::x::x:

bigsy

Hey @GD62 yeah unfortunately KRAS mutant 🙄 it’s literally rubbish news every step of the way at the moment. Just hopin the bloods go down and my next scan has stayed the same or reduced..........fingers crossed. Good luck for your scan on Friday- let me know how it goes :x:

GD62

It’s a pile of shit lol 😂

soph86

Hi @bigsy. Sorry to hear your dignosis. I was diagnosed at a similar time with a similar spread. I had a right hemicolectomy but my bowel was close to perforation so they needed to perform surgery.
It might be worth checking your mss/msi status. For most people they are mss but if you are msi there is potentially immunotherapy option. It’s not approved on the nhs here but if you are msi id try to push to get it somehow.
Other than that it’s worth looking into clinical trials too and hopefully the marsden can advise on this to see if there is anything suitable. I’m being treated there, it’s an amazing place with world leading oncs. Bey common for them to be asked for a second opinion I wouldn’t worry about upsetting your current team. More often than not most hospitals ask if you want a second opinion from the marsden or the Christie in any case.
Best of luck.
Soph

Baxter2

Hi @bigsy

I'm sorry to read your update. You must be left wondering where to turn next? You've had some really good advice and I'd certainly recommend you seek a second opinion. I reckon @soph86 has good advice for you. Please don't lose hope. Many of us have had Peritoneal and liver mets and are doing ok now. There should be treatment options out there and it's not unknown for people to crowdfund for drugs not available on nhs.

Good luck and keep us posted!

K💚💛💜💙❤️

Wren17

Hi@bigsy sorry to read your post and update but want to tell you to try to remain positive. I was deemed inoperable and put on palliative chemo for life and was turned down across the country for hipec however i had hipec last month - so there is always hope :x::x: