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:

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 ;)

Sean

Hello everyone!

That ct^ scan in Dec, showed progression. So we switched to second line. Capox and Avastin on docs rec. The avastin im self funding at £2215, every 3 wks. Sweet as.

Good news is, it's working a treat ;) Pulled my cea down and tumours back no doubt.

Yesterday I started my 58th? chemo. My previous one was right mare up - check it on insta @oebs1. Was the second time i'd puked direct from chemo, I found what went wrong and put it right for this rd. Pleased to say the latest has been uneventful..so far.

Ive done 8 oxaliplatin. The neuropathy hasnt been as bad, tho I am dosing LDN tabs which I feel are helping. It kicks heavy for a few days then wears of. I wear heated gloves from infusion. Helps! that and sipping warm water throughout. The jaw thing i'll never get used and my god, you can't even cry on this chemo without enduring pain :-X It was made in 1979 , so you kinda expect it to be brutal AF. Do the prep, makes it a WHOLE lot easier. Can't just rock up and do these type of chemos, especially when the weathers sh£te.

Through my use of cannabis oil, im now in much, much better shape than I was nearly 3 years before i'd done any treatments. Gives me an incredible recovery, therefore allowing me to exercise. Diet too is a massive factor for me still. Tho, when times are heavy, comfort eating can ease the pressure of mind and you shouldn't feel bad.

anwyhooooos whats the criac here now?

EssexDan

Hi @Sean nice to hear from you mate. You're a true warrior!

Sean

Cheers @EssexDan ! If you're worried about it coming back, start dosing cannabis, at least that way you're doing "something" good luck with the June scan 🙏

EssexDan

Thanks @Sean . Im not too worried at this point thanks mate. But i already have my CBD oil just havent used any yet.
Fingers crossed for you too mate. Im always thinking of you.

Sean

Use it! Start priming your ECS 😉

angelj

Hi @Sean great to hear your update and things are improving for you, fantastic! Which cbd do you take and do different ones do different things, does it help with fatigue? Take care :x::x:

Sean

hey @angelj ! yes thankfully things have improved and settled a fair bit for us here, but for how long... :?:B) The chemo's still crap but this one is going a LOT smoother than the last. How is the hubby doing?

I use a few different types of CBD. CBD bros Purple for emergency shots, anxieties etc. Tonic tribes 25% for diluting THC mixes that I make for myself.
There's plenty of info on their website, you can get samples too. I recommend starting with blue/green then working up in strengths...... www.theoriginalalternative.com/all-categories/
I use the black indica a lot. Indica is more relaxant.

Heres a really good recent article on CBD. There's also guides etc within the site. Really useful!

www.projectcbd.org/science/cannabis-and-immune-system

angelj

Thank you @Sean it’s very interesting and as you say if it helps you cope with the crappy chemo! I will have a read this of the links. My OH is good thanks he just got the all clear from his post chemo scan and we are overjoyed. The meeting later with his surgeon to discuss 5 year follow up plan soon brought us back down to earth when he said the predicted rate of recurrence 😮 Keep saying we are not a statistic and will do our best to stay hearty and boost immunity. Wishing you the very best :x:

sampxo

@angelj I just read your last comment. My mum is currently having her post op chemo. She was told 50% chance of recurrence without the chemo and 60-70% chance of cure with it. Was your other half given the same information? :x::x:

angelj

Hi @sampxo that’s right, it’s far from an exact science so not focusing on the stats and looking towards scientific developments to drive this dreadful disease back to the hell hole it came from :x:

sampxo

@angelj I have a friend who is a medical professional who has explained that that is a generic out of date statistic as there are currently no UK wide stats for any stage, she explained that success rates will have increased since these figures :x:

angelj

Hi @sampxo thank you that’s good to know, best wishes :x: