Younger people with bowel cancer

You can find lots of useful information for younger people on our website, as well as details of our Never Too Young campaign.

Sean

Hey Everyone!

Hey guys!

I'm a 32 yr old male and I have recently been diagnosed with colo-rectal and liver cancer, of which there is a fair bit :( I havn't actually been told my staging, tho i can tell by the way I have been rushed onto chemo (fol-fori) it's very advanced.

My bowels had been very erractic for the past 8-12 months, at the start of the year I became very constipated, GP prescriped Laxido, which eventually started to help things along.

Forward to the last week of April, when I started developing a very heavy, and severe pain in my liver. Which led me bringing myself into A&E. I told the docs I had a bad pain in my liver, tho they were certain it was my appendix/gallstone. Was too young, apparently, to have Liver problems. Few days later an MRi revealed I had several large liver lesions, largest being 8.2x8x8 CM another of similar size and others dotted around the liver. Let home and scheduled for the biopsy 3 weeks later. Done the biopsy and went of holiday happy as larry, as one of the registers said I was fine to drink. Given I thought it was drink related, i figured it wasn't anything serious. Had a few beers on holidays, which mainly resulted in me violently spewing my guts every where. I came home severely drained of energy/strength, knowing something was in fact, seriously wrong with me.

Was first told on the 16th of May that my lesions were in fact malignant tumours, suspected of being secondary. A further colonscopy revealed the primary to be colo-rectal, still waiting on the biopsy results of this, tho its pretty certain.

Started my first treatment Monday (fol-fori).

This was all pretty devastating to hear first of, but I am absolutely determined to beat this thing back to where it came from!

Look forward to engaging with you all on this journey!

Sean.:x:

jandals

@Sean congratulations on your beautiful baby boy - what lovely news! Hoping as things are getting more settled that soon you’ll be able to resume trial (with lots of success!) keeping everything crossed for you - you have more strength and reserves than you know.big love to you and your family :x::x::x:

Jonathan25

Sean, well done for your interview. Can’t have been easy. Sending you loads of love mate.

Do you still need fundraising doing? I wanna help.

Sean

Hi everyone!

Been a while...... Been busy as you can imagine with Max and navigating this stage 4 landscape :o

- but im still alive n kicking - after some hairy times there recently.

Since the trial came crashing down.. I was put onto Lonsurf. Which initially showed a response in my CEA... but it was going the wrong way inside :-/

- Max was born at the height of Covid.. Was lucky to be at his birth. I still got great joy from the day and some really cool pics, even tho I wasn't feeling too great - the mind can pull you into great places. Blessed.

by cycle two I was having bad chest/rib pains - which at one point got DX'd as shingles.. oh boy do I wish it was. I was overlooked for two teleAps meaning the onco team werent aware of the symptoms, which was actually the cancer going beserk. I managed on for another week (on bleedin gabapentin..) before going back to AnE.. Fortunatley there was a consultant there who recognised it wasn't shingles and sent me for emergency CT scan..

Not so long later im being told its spread to most of my top half. Lungs, Lymph, Peri and things had been heading that way. Also in spine.

I needed something to halt it - given few options.. I figured my old chemo Fol-Fori with a new side kick would be the best form of attack. I'd previously done well on this chemo and had hope for it.

Slight prob in that we would have to pay for the Panitumumab (£1500 every 2 wks) but needs must!

- Ive had to start a new fund - it's in profile.

The first one back I was in such bad shape we done it in hospital with just Panit alone after bringing myslef back in with crippling pains.

number 2 & 3 were tough as I experienced bad side effects.. due to my high bilirubin I couldn't take any oils. However I could feel the chemo literally bringing me back to life. I was determined as hell to get as much into me -asking for the irinotecan to be topped up.
(when bilirubin is high they only give half doses - so long as its 40 or under)

Mouth problems and sleep were badly affected. I was on steroids too constantly which dorve me near mad! I gotta device called chemomouthpiece in the end which has helped.

Once we hit 5 cycles back it was time to scan.... low and behold Ive had another "fantastic response to chemo" we found out last Monday. So brilliant news for the RE-Challenge crew!

Also my first "good" bit of news in cancer world for some time when it really did look like things were going that way.. Pallative care nurses round the house every day. Syringe drivers on me. The mental aspect of this was insane. Questions such.. how would you like to be taking out the flat when you pass. Im just like.. you're buzzing mate - you dont know me yet. But its their job and they have been a great help with pain relief/support. I actually liked the nurses coming round, not so keen on the reason.

Yet I can barely get a break after good news these days. Was back in hospital this week with liver capsule pain.. Put on short course of Dex and now hoping my bilirubin is settled enough for another chemo next week. Bloods in the AM. My legs also swelled up a bit again but nothing like before. Belly bloated too so on laxatives. I may need to get "drained" :-:x:

so yeah .. things have been good! haha Im just happy to be alive experincing Max and our lil fam. This covid isn't making things easy in the slightest tho, is it !?

Ive missed a lot of bits n bobs but thats the main gist of what ive been upto since Feb.

Still very much on the hunt for another Clinical trial. Cannot believe how naive I was to them until fairly recently but have a good grasp of it now. It's a real head messer at times with all the criterias - but ultimatley what will keep most of us going beyound our prognosossis's. They need more awareness.

Anyways enough of my ramblings.. Hope everyone is bearing up ok out there!

Sean.

Sean

Me and Max on his first swing today :)

Floss07

What a lovely picture - so sorry you are having a rubbish time and fingers crossed for you the chemo works...:x:

charleyb

Great photo of you and Max @Sean !! I will keep everything crossed that your next cycle goes to plan :x::x::x::x::x::x::x:

bettebette

Max is gorgeous @Sean! Sorry to hear you have been having such a torrid time of it. Sending you lots of good wishes for the next stage of treatment :x::x::x:

Lucy118

Lovely photo @Sean. So sorry you’ve been having such a tough time. Keeping everything crossed for your next stage of treatment. Sending lots of love :x::x::x:

kathyS

@Sean lovely photo of you both hope that you continue to have great response - you are doing so well with your great attitude - lots of love Kxx❤️😘🙏

Poppies

It's lovely to hear from you @Sean and what a horrid time you have had of it. Your attitude is amazing and what a lovely photo of you both.

Everything crossed for a continued good response to treatment P :x:

angelj

Hi @Sean it’s good to hear from you. What a rough time you’ve been going though, glad things are looking better. Max is absolutely gorgeous :x::x:

cyclingjohnny

hi @Sean so glad that things are going slightly better, wonderful photo, wonderful attitude, wishing you all the best, cheers john. :x:

Sean

ahh bless you guys! He's just turning 5mnths now. Teeth about to come through :-:x:

My bilirubin has come down a bit more, but other LFTs still quite high so re-doing bloods Wednesday when back in for actual chemo. Hopefully the extra day with full on rest does me well.. Im bordeline atm for chemo.

I still have a hard time sitting still :o

Due to my spinal mets were looking to add in Denosumab on next cycle.

Belly still quite stretched, we may have to drain wednesday if it doesnt improve.

Still. We keep moving forward!

pic from post chemo infusion #77 I didn't think I would be able too manage 2 at the beginning... keep hope - always!

Siona

Just read your profile, what a journey @Sean and I hope things will get better or at least stable so you get to keep enjoying time with your sweet baby boy. Those milestones (first swing, etc.) are really special :x::x:

Sean

Thanks @Siona I've just updated it.. Was a fair bit out of date.

Max is off to his first music class today bless him.. Whilst daddy does chemo 😏 but I get to see him later and that's my prize.

I'm getting the juice. :x:

Jane39

Hi @Sean Just catching up with your updates. Max is gorgeous. Sorry to hear of the news but sounds like a great response on the re -challenge. Hope your bloods are good enough today for chemo so you can get another cycle in! Jane :x::x::x:

Jonathan25

Sean, max is incredible. What a little dude. Amazing you got to be at the birth. Keep us updated mate when you can. Sending you love buddy! :x::x:

Baxter2

@Jonathan25

I'm so sorry to have to tell you that Sean sadly passed away very recently. His funeral took place last Wednesday.

Lots of love

Karen 💛💜💚❤️💙

Jonathan25

Hi Karen

It’s been too long. This has hit me hard. I knew how poorly he was and how much he was fighting it. Not easy. I hope you are ok.

Life can be so cruel

Baxter2

I'm fine thank you @Jonathan25! I've just commented on your thread!

Lots of love,

Karen 🌼🌺🌻🌸🌷