Younger people with bowel cancer

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:

1234annie

Good news @Sean about the bowel, sorry to hear about the liver. I was looking at an update on the microbiome and the role of probiotics and there is some good stuff on there. Obv I'm not sure how it works with chemo but this professor was saying some strains have good results for cancer patients. I'll pm you the link. They say the microbiome isn't just in our gut but every cell in our body. I just love reading all the science stuff. :x: :x: :x:

angelj

Hey @shaun good to hear your update, as you say mixed results but hopefully some treatment will be agreed soon. Keep up the power :x::x:

Clancy

Hi @Sean, good to hear from you, my liver hasn’t got the message yet either, I too am hoping for ablation. Very good news about your bowel though. Keep going.:x::x:

mem

Glad to hear you’ve got some great support @Sean and hello to Sean’s new partner too 👋🏻. I have routine tests due in Decmber and I am already thinking, bet I’ll have to chase them 🙄.
Good luck for the 5th (remember, remember) and here’s to dormant little P’s . You’re doing good Sean, keep that head high! :x:

Sean

Thank @mem! It's always really nice to hear from ya😎
Yeah they don't half mind hanging around these poxy lil mets @Clancy hoping the surgeon has some solution for me tomorrow!? Hoping you get it too mate 🤞
@angelj got 2 training sessions in since Mondays 3x chemo. I am the power 💪 that's another Sean/Shaun you've tagged there... 🙀
It's been another tough week losing 3 mates to this godforsaken disease we have. We just keep going the best we can. Keep strong out there 💚

david watt

@Sean sounds tough. Each time someone dies it feels like part of us dies. We're the 3 people all colon cancer from local hospital?
Winter is here and cold and flu season, all we can do is try our best hope for a positive outcome. Best wishes David

Sean
Quote from @david watt:
@Sean sounds tough. Each time someone dies it feels like part of us dies. We're the 3 people all colon cancer from local hospital?
Winter is here and cold and flu season, all we can do is try our best hope for a positive outcome. Best wishes David

2 local, one lung. All with young kids 😑

mem

Hey @Sean. Please tell me to do-one if you don’t want to answer, I was just wondering how you got on with your liver guy on the 5th? :x::x:

determinedjoan

Oh @Sean , sooo v sorry to hear about your friends; how terribly sad.
Thinking of u & sending love 💕 & hugs.
Hope appt Monday went as well as poss.
Take care :x:

Sean

errrr not so great @mem other surgeon has said no to ablation on me. So they are proposing SIRT for the time being with a view to doing that later.. i need to get another opinion on this tho.
Unfortunately they don't do sirt/sirtex on the NHS anymore (thanks guys) so it's likely i'll have to raise the 25k for it.

I was needing to crowdfund for my cannabis oil alone, after Monday the stark realisation that Im soon out of options on the nhs hit home. Im gonna need a fair amount of dough to keep myself alive for a decent amount of time.

Again im gettin mixed signals re' chemo. Suregon thinks ive had to much chemo and its done. Oncology, keep going with it.

I went to see the people at Care Oncology Clinic today, im gonna be starting their protocol asap. Absolutely worth a shot I feel.

Both oncology and my GP are unable to help me get medical cannabis.

determinedjoan

Oh Sean, so v soz to read this; how v frustrating for you.
Thinking of u & wishing u all the best of luck with Care Oncology Clinic ; pls keep us posted :x:

angelj

Hey @Sean not the answers you wanted to hear I’m sorry.its just not fair you have to self fund 😡 I know you will keep exploring other opinions and I really hope Care Oncology helps you, I’m not up to speed on their protocols. Wishing you the very best :x:

mem

Sorry to hear this @Sean and sorry and angry it comes down to money too! I’m not really au fait with the new policy/law in prescribing medical cannabis; why did they say no to you? In relation to chemo, and as long as you are able, I would be inclined to take your oncologist’s advice and keep on going! I’m sure they will be keeping a close eye on you too.
In one way or another Sean, I hope you find a way forward. In the meantime, you’re still on the good stuff (chemo 😉) and quite rightly exploring every avenue you can; you are certainly not one for giving up! :x::x:

GD62

Hello @Sean , great to see you doing remarkably well against the odds and that is absolutely wonderful to see how young people are areal credit and brave too. Praying for you .....positive healing :x:

1234annie

What were Care Oncology like @Sean?
It's totally worth a shot and like mem said stay on chemo. I hope that as they suggested SIRT they will do it for you. If you have a crowd fund page please let me know the link. :x: :x:

Sean

@mem they've simply made it neigh on impossible for any of us to actually get it. Total sham! Feels like the nov1st legalization was purely done to quell public outrage. They are 100% waiting till Epidiolex gets the full ok here ir.gwpharm.com/...solution-first-fda-approved-plant

check the original patents patents.justia.com/patent/9962341 The CEO

Got my second opinion back and im told its def wise to shrink some more. Only thing is were gonna be switching chemos soon as this one looks to have run out - just when exactly do we do it. Keeping a close eye on my CEA. If it's risen im moving straight onto capox. Only prob is, i'll lose funding for cetuximab (onc wants to keep me on it/as do I) so i'll have to self fund either capox or cetuximab. Depending which is cheaper ?

Ive an/other CT scan already in 4 weeks. If we can get rid of a few mets, I "could be inline for abaltion rather SIRT. I feel like I can do it.

Gonna be doing skydive to raise some dough soon if anyone fanices it!?

david watt

@Sean capox is relatively cheap I think or guess. Cetuxmab however is definitely not, 2 or 3k per dose every two weeks. I would definitely try to hold onto the cetuxmab. That's why there is so many issues about stopping and getting it back.

Sean
Quote from @1234annie:
What were Care Oncology like @Sean?
It's totally worth a shot and like mem said stay on chemo. I hope that as they suggested SIRT they will do it for you. If you have a crowd fund page please let me know the link.

I liked them and what their doing. Pad was great to chat too and pretty knowledgeable. I'll be looking to start atleast some of their protocol soon as I figure what i'll be able to handle.

mem

Oh,ok @Sean. It seems to be a very complex issue and to be honest, goes over my head a lot of the times 😳! I can see it will cause you more frustration though, which you need like a hole in the head at the mo!

I will be keeing everyhting tightly crossed for you re the chemo doing some shrinking, or even better, some obliterating! Good luck with your Sky Dive too and again, keep that head high! :x::x::x:

Sean

cheers @mem already got a CT scan lined up for 4 weeks time. Ive doubled my THC and gone quite strict on diet, Im also back onto juicing now. Beetroots fire me up bigtime ;)