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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:

Baxter2

Glad he’s doing great @Sean and that you’re sorting out the issue with the council for him. There’s always something to add to our general stress levels isn’t there?!

You take care and get yourself all prepared for your op soon!

Lots of love,

K💚💜💙💛❤️

mem

Happy birthday for yesterday @Sean and what fantastic news re your liver op! Chuffed to bits for you :x::x:

deedeedokey

Happy Birthday Sean, I have my fingers and toes crossed for you, that's the spirit we are all behind you for beating this thing , keep planning Dx

Sean

it's non stop @Baxter2 :-/ thanks @mem @deedeedokey ! had a good start to prep last week, gonna smash this week, then tail of next.

Baxter2

Have you got a date for the op yet @Sean? 😉

Sean

yep it's the 28th Feb @Baxter2 2 weeks Wednesday. You know if I wasn't having to deal with all this council bo"£$cks I'd be cruising. My heads not right, better, but not right. These swines are causing a great deal of stress here.

Baxter2

Oh wow! Not long at all @Sean!

I’m so sorry to hear of your ongoing dealings with the council on your dads behalf! Is there not another family member who can help out or even take over? As we all know, a good frame of mind is crucial in dealing with cancer and especially the prospect of surgery too. I hope you can take time out for yourself and draw on your own support network in the coming weeks Sean. Remember, we’re all here for you too.....anytime! Take care!

Karen 💚💜💙💛❤️

Sean

It's just me here atm unfortunately. Neither brother can come over. This is all being done under the guise of the "bedroom tax" our "spare room" is in fact the dining room.
However was told today, that with me having the higher rate of pip, were entitled a spare room, for carers. Need to follow that up.
Were not adverse to moving, just not whilst im doing chemo. But that's probably what im looking at. Even our local mp has turnt her back on us.
Im saddened greatly, at the total lack of empathy we've had from these people.

On a letter from them. The councils medical advisor, had deemed me (stage4er just about to have major surgery - last yr) fit to move home. How on earth can that be?

Got a letter today from hospital, saying there's a possibility im gonna be doing cetuximab just before surgery - so I don't lose funding. It's insane

Baxter2

This is just a whole lot of uneccesary hassle you could well do without @Sean! Honestly, some people! How do they sleep at nights! As you rightly say, you’re saddened by the complete lack of empathy and I am too! As for the Cetuximab situation..........crazy! I think it’s unethical to withdraw a treatment which is proving effective purely for financial reasons. Grrrr!

Try to keep your spirits up @Sean and follow up the spare room for carers. Hopefully that will be one thing off your mind!

Keep us updated!

K💚💜💙💛❤️

Caraeliz24

@Sean it is crazy about the cetuximab but worth trying if possible - I lost the funding on mine so have had to have the Folfiri on it's own. I don't mind at this stage because of the outcome of surgery being clear but it worked so well for me I would be concerned i wouldn't get it if I get recurrence. However if that happens and i have to pay for it I would probably look into immunotherapy.

Sean

I will absolutely want to do cetuximab with chemo after. It's been great to me (i tink :-/) Shown/proven to effective on us, ras wild mofos! - so why on earth would they pull it of me again. agh.
Anyways im a lot less stressed this evening - i'd lose my god damn mind were I to be without my oil. So theres always that ya know.

Cetuximab costs £178.10 per 20‑ml vial and £890.50 per 100‑ml vial (excluding VAT, 'British national formulary' [BNF] online, October 2015) :o Good lord

Do you know if you're suitable for immunotherapy @Caraeliz24 ?

Im going to a charity called "hope through crisis" in the morn for help @Baxter2 ap their familliar with such cases. Heres to hoping!:x:

Caraeliz24

@Sean yeah I would be, my tumour was High MSI and MMR deficient so it’s supposed to be effective, Pembrolizumab I believe though it’s not funded by NHS yet for bowel cancers apparently coming down the line though.

Sean

Sweet that you've got that as potential back-up. I don't think I am - it can be quite hard getting clear answers on these sort of questions from my team. Sounds well promising for ye tho @Caraeliz24

Polly 1

Hi @Sean my husband has hit the cetuximab problem as well.
He had 11 rounds folfiri/cetuximab then was going for liver surgery after a 6 week break (to clear the chemo from liver etc) March 5th.
After a liver CT they cant see the liver met so now want a liver MRI to check. Also they couldnt see the lung met on the last lung CT in November so want an up to date lung CT.
As despite us chasing the 3 hospitals hard neither scan has actually been done yet and with less than 3 weeks to go now before the 6 week Cetuximab limit is hit the Oncologist has asked for the picc line to go back in (yesterday) and Folfiri/Cetuximab to restart at T minus 2 weeks (next Wednesday)
As he is unsure if the operations will go ahead now he wanted hubby back on chemo so he wasnt left with no operation nor cetuximab. Once he is back on it there needs to be a 6 week gap before a liver op....
Madness isnt it.
I hope all goes well with your chemo/operation. Are you having cetux on its own?

mem

Blooming eck @Sean you've certainly got a lot on your plate at the mo. I really hope you get some answers/help today? Glad to hear you have now got a date for your liver resection. Not long to wait now 💪🏻 :x::x:

GD1962

hello @Sean just read your latest string and really sorry that you have a great deal of messing about. It is very sad how some of these elected politicians can be to constituents. I can't say much more other that I'll keep you and dad in my prayers.

hugs and positive healing thoughts :D

Lauren5429

Brilliant news about the surgery @Sean - you got this! :) :x::x:

soni

Hi everyone I am new here

Chris82

Hi @soni welcome to the forum. Hope we can be of some support. You might get more responses by starting your own thread - just click the 'Start a topic' button if you want to post in this part of the forum.

Chris

Wendywood

Hiya lovely @Sean been thinking of you and wondering how ya doing having to cope with councils and Cetuximab funding....... (my onc told me it cost £2500 a shot! As I can't have it now cos of allergic reaction its a shame we can't nominate our drug allocation funding to someone else! )
Sending you big smiles and warm hugs!

Wendy :x: