one year of chemo - Stage 4, 37 years old.

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tufnellp
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Joined: Tue Sep 09, 2014 6:27 am

one year of chemo - Stage 4, 37 years old.

Postby tufnellp » Wed Sep 02, 2015 11:09 am

Hi all,
A year ago today I started chemotherapy. Besides quietly mentioning to my *now* fiancé I just wanted to share on here. I only posted once on colon talk in the earliest panicked days, but have checked in on the forum for moral support and info throughout the year. It's still the best thing I've found online and everyone here is truly incredible. Despite it being a year later I still feel like a rookie and don't know all the info everyone sticks on the bottom of their posts(!) but here's the basics:

Colon Cancer, Stage 4. Two tumours were removed in 6+ hour surgery (along with most of my guts- I still have a stoma). They found it had broached the wall and spread to 4-6 nodes (can't actually remember number), that were also removed in surgery. Biopsy also picked up spread to the peritoneum. No signs of any other spread to organs etc, no detectable tumours or anything. Started with 6 months INTENSE chemo, and am now 'just' on Avastin and Capecitabine - 3 weeks cycles, in hospital once every 3 weeks for the Avastin and then 2 weeks of Cap, 1 week off.

I've had 3 3-montly CT scans that have so far not picked up anything detectable anywhere in my body. So it feels like 'best case' scenario of a very worse case scenario (Stage 4 colon cancer at 36 years old!!). Apart from problems with dry feet and being a bit more of a 'creaky old man' then before things have not been too bad(!?). I had a weekend away in Copenhagen this weekend (I live in London, UK.. go NHS! originally from around Toronto) and spent two days straight riding my bike around with fiancé, eating nice food, and even having a couple of beers. (wild man)

Every day is a miracle. After over 6 months of non stop stress and panic and general anxiety I have really felt 'back to normal' here. (though always nervously awaiting the next scan.. next beginning October). I got engaged to be married next year, we got TWO kittens, and are even talking about a baby (as I nervously keep an eye on the health). I honestly was not sure I would be around at this stage.

I am in a celebratory mood, though also feel like this is 'one year down' with 4 to go before I even dare to breathe a bit easier. (I'm into this magic 5-year free milestone though am also milking life to its fullest along the way).

I'm not sure if this chemo will begin catching up with me or if the next year will be more difficult as my body gets slowly beat down. Anyone have any experience with the capecitabine/Xeloda?

I also hope I provide a LITTLE bit of an relief for those just starting this journey... who may be on the younger side like me... who may have got this SCARY stage 4 diagnosis but under slightly unique circumstances.

Any thoughts or feelings welcome. Whether it's diet/lifestyle advice or just a 'hello!', I'll take it. I've tried to move away from just being 'cancer guy' friend to people I nkow and get on with things so am unsure about contacting friends telling them about this milestone. I have incredible supportive friends and family, but I have this aversion to everything about me revolving around my disease so I though in this instance I'd 'celebrate' here. :)

Simon.

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: one year of chemo - Stage 4, 37 years old.

Postby ozziej » Wed Sep 02, 2015 11:44 am

Congratulations on being one year out and finding your way to NEDsville. Hopefully you'll stay that way for a long, long time.
Best wishes
Jan
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

NedPlease
Posts: 546
Joined: Fri Mar 23, 2012 3:56 pm

Re: one year of chemo - Stage 4, 37 years old.

Postby NedPlease » Wed Sep 02, 2015 12:06 pm

Great news!!
I didn't have to face cancer at age 37 and can't even imagine it but do get what you feel.
My signature tells my story and I'm also into the magic five year mark:)
Best to you,
NED
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 6/18 Clear Scans
6/19- first time no scan
Today- NED

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Crystald
Posts: 142
Joined: Thu Feb 26, 2015 1:50 pm

Re: one year of chemo - Stage 4, 37 years old.

Postby Crystald » Wed Sep 02, 2015 12:29 pm

Every day is a miracle.


Thanks for giving folks hope. Living with the diagnosis of colon cancer is such a life changer, no matter the stage.

Any good news is great news for all of us on the journey.
Age 58
DX Jul 2014 Stage IVb CRC metastatic, unknown primary, CEA 1826
Inoperable, Chemo for life
KRASwt
MSI: not tested
29 Jul 14 Port
30 Jul - 19 Jan 2015 Folfox (12 cycles) CEA 164.5
9 Feb 15 - 20 May Flofiri failed (6 cycles) CEA 417.0
17 Jul 15 - Initiated Vectibix CEA 555.5
17 Jul 2015 - 14 Jan 2016 Vectibix
8 Feb 2016 - 11 Apr 2016 Xeloda
26 Apr 2016 Hospice

husbandswarrior
Posts: 13
Joined: Fri Aug 28, 2015 11:10 am

Re: one year of chemo - Stage 4, 37 years old.

Postby husbandswarrior » Wed Sep 02, 2015 12:37 pm

I am also new to this board. My husband was diagnosed with Stage IV small bowel cancer in October of last year. I feel like we are just beginning the fight after some unfortunate findings on recent scan. He responded so well to his initial 8 treatments of 5FU that they gave him a "chemo vacation" over the summer. Well that vacation was enough for unwanted house guests to show back up again. I am in awe of how many young people have been diagnosed with colon cancer and so many without a family history. I am not sure what the screening age for people is the UK is with regards to colonoscopies, but I feel that the age should definitely be lowered. I just wanted to send you out a huge congrats on your one year mark and best wishes for many years to come.

PEEJAY
Posts: 54
Joined: Thu Aug 27, 2015 2:28 am

Re: one year of chemo - Stage 4, 37 years old.

Postby PEEJAY » Wed Sep 02, 2015 1:07 pm

Newbie here too. I've been reading the posts for a week or so, but was waiting to jump in. I was diagnosed Stage 4 colon cancer at 32yo with mets to liver. During surgery, they also found it in my peritoneum and I also have a stoma. I'm 7 months in and chemo isn't too bad for me! They put me on Erbitux after surgery, though, which causes skin rashes all over, but the worse the rash, the better the medicine is supposedly working so my wife and I actually root for it to come in bad. Had a hopeful meeting with an Interventional Radiologist today and getting ready for chemo in a couple of hours. Thanks for the post, Simon!
Age 33
Stage 4 CC with 20+ mets to liver 1/20/2015
8 Rounds Folfoxiri feb - april 2015
Colon Resection 5/2015
Permanent Colostomy
Peritoneal Carcinoma found
Folfiri + Erbitux 6/2015 - 9/2015
Angiomapping for Y90 9/24/2015
Y90 Treatment 10/13/2015
Power port re-placing sched. 10/23/2015
Due back for chemo 10/29/2015 (right before trick or treating!!!)
11/26 Chemo not working
My colon cancer podcast "I'm Dying Here" in iTunes: https://itunes.apple.com/us/podcast/im- ... 1035722798

stu
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Joined: Sat Aug 17, 2013 5:46 pm

Re: one year of chemo - Stage 4, 37 years old.

Postby stu » Wed Sep 02, 2015 1:28 pm

So good to hear how your getting on. It sounds as though your a good team.
The good old NHS has helped my mum reach the 6 year mark following a stage4 diagnosis. Great.
Keep on going and I will keep an eye on the next follow up,
Regards
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Annemiek
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Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: one year of chemo - Stage 4, 37 years old.

Postby Annemiek » Wed Sep 02, 2015 1:49 pm

Hi Simon,
Congrats on continuing your life and making plans for the future whilest under chemo treatment. Great to hear you are doing well and fingers crossed the baddies will stay away.
I'm from across the small pond North Sea) and live in the Hague.
I was admitted to hospital with an abcess outside my colon last year on september 2, and the echo only showed a slight thickening off the colon wall, the endoscopy 6 weeks later revealed cc stage 3c.
Today was my very last infusion of 5Fu and leucovorin. Tomorrow the pump will be disconnected and I will start my next phase.
Feel not strong enough yet to start making plans, need a reassurance scan first and then will start living from holiday to holiday ( instead of from scan to scan). Do you take any vitamins, aspirine or very healthy raw broccoli shakes? ( yuck!!!)

Good to hear from you!
Hooe you will post more good news each year from now, until nedsville gets boring and your kids demand all your time :lol:

Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: one year of chemo - Stage 4, 37 years old.

Postby jillbugs4110 » Wed Sep 02, 2015 2:22 pm

Simon

I love your positive spirit and I can relate we have a similar dx. I appreciate how honest you are and just upbeat keep coming around I need that.

In my thoughts and prayers

Jill
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

TheMr'sWife
Posts: 5
Joined: Fri Jul 26, 2013 3:52 pm
Facebook Username: ALLISON MARTIN

Re: one year of chemo - Stage 4, 37 years old.

Postby TheMr'sWife » Thu Sep 03, 2015 6:45 pm

Great news n thanks for sharing the good stuff... I haven't been on the forum for a while and realize I should be - to help encourage others when I can. Blessings to you.
TheMr'sWife
6/7/13 TheMr (51 yo) dx CC w/ 1st routine colonoscopy
7/11/13 Sigmoid colectomy: dx T2N2 & 6of16nodes/Stage IIIC
7/20/13 Biking again
8/19/13 started FOLFOX-> only 8 Oxaliplatin treatments (peripheral neuropathy)
:!: Glucocorticoid-induced hyperglycemia due to chemo -> Insulin during chemo, then Metformin, Invokana, now Januvia.
Loving life & biked more than 5,000 miles since dx. Thank God.
New dx of 3cm tumor on liver, biopsy 4/3/17

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Cherie
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Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: one year of chemo - Stage 4, 37 years old.

Postby Cherie » Fri Sep 04, 2015 8:30 am

I don't want to scare you but ask for a PET for your next scan and look into HIPEC if anything comes back. I wish you a long life.
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

NateA
Posts: 115
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Facebook Username: Nathan Drew Allen

Re: one year of chemo - Stage 4, 37 years old.

Postby NateA » Fri Sep 04, 2015 8:45 am

Diagnosed late July with stage IV colon cancer w\ mets to liver. Just turned 44 and am on second cycle of
chemo, well hospital chemo, at home now with the 48 bag. Great to hear from folks at your place. My numbers after my first scan all sent down, praying for it to continue. I want to be where you are in ten months, you're an inspiration to me. Thanks for sharing the update, have one of those beers for me, I'm verboten right now lol..
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

tufnellp
Posts: 6
Joined: Tue Sep 09, 2014 6:27 am

Re: one year of chemo - Stage 4, 37 years old.

Postby tufnellp » Fri Sep 04, 2015 10:28 am

Hi everyone,
Thanks so much for the feedback and telling me about your journey (or whatever a less cliché word is.. your awful experience, perhaps?? this isn't fun for any of us)
It really helps me to hear from others and remember what everyone is going through. Still having to go into the hospital every 3 weeks certainly helps keep me grounded, in that I get to see people young and old at all various stages, their friends and family and the nurses as well. Everyone saying hi and bye to each other when I go there, the extremely friendly nurses, everyone just reminds each other that we're all in it together and even if it's for the worst reason possible, we're all there for each other and share a 'special' bond! (I live in London, UK, people smiling and waving and talking to strangers is not the norm here!)

re/ someone mentioning the PET scan- good reminder, I will check on that when I'm in end of the month. I have got one but that was more last year. I do remember grilling them about getting another and they had a very logical reason why CT was better right now but I can't remember what that was!

re/ taking a chemo holiday and 'it' coming back- I'm so sorry to hear. (sorry I can't see who wrote what as I write this so I'm replying blind..) this is a reminder of why I should and want to keep gunning forward blasting myself as long as my body can take it! I do have a reversible stoma and have always been given the option to take the 6 or so weeks I think it was off to get that revsered but I've told them that truthfully I'm fine with it at this point, I don't want anything to get in the way of keeping this awfulness at bay. (I will have a very extravagant pool/beach party if I ever do get it reversed, I'm not too self-conscious but have certainly avoided any invitations this summer that would involve me having to swim/strip down in public)

re/ diet- I was always quite healthy and eat/ate very well. (this C came due to genetics, damnit!) I am extra self aware of it all- I straddle the line of trying to stay super healthy, while trying to keep up a good weight. I was always naturally skinny, this cancer/stoma/chemo has meant a constant battle to GET FATTER! but I have a juicer AND a nutribullet now, and get loads of good stuff down me. I do not subscribe to any claims of miracle cures but definitely think diet is critical. The beer I mentioned having is quite rare, I'm all about protecting my poor little liver and organs these days, they're going through the ringer. That said, apologies to anyone who doesn't approve, I do 'indulge' once in a while now in that magical smokeable thing that some say helps things- and it does.. take the mind of things, makes me eat more (see above), relieves some nausea I occasionally get, and heck still need some sort of naughty vice.

this has reminded me to come back to the forum more. the couple of you just new to all this I should really send you a message (you can do that here, right?) as we have gone through all stages of emotional breakdowns, EXTREME physical pain, uncertainty (that still kinda exists), and then those things slowly dissipating as I slowly returned to work and life best I could. With a LOT of help from my friends and family.

Lastly, just a random though I had here at work today- though I'm pretty much back to business as usual, the thing I help use to explain how I'm doing now to people is (as I look totally normal.. no hair loss.. etc.. they can't SEE anything wrong). is this- that before any of this happened, if I felt the way I do on any of these 'good' 'normal' days I have now, I would have called in sick and stayed in bed. So, I think I've just had to move the post, change the threshold, and get tough and get on with things, as I can't spend the rest of my life lying around not working or feeling sorry for myself. but it also helps explain that though things are pretty good right now (live in the NOW, no dwelling on past or future.. what I could have done or what is going to happen) it still is hard and I don't think I'll ever be back to the old life/me of a year+ ago.

Thanks again all, keep commenting. I'll try and pitch in more here. And maybe keep my posts shorter. :)

You're all amazing and inspiring. As my dad says, one foot forward at a time. xx

S.

plastikos
Posts: 343
Joined: Wed Jan 14, 2015 6:09 am

Re: one year of chemo - Stage 4, 37 years old.

Postby plastikos » Fri Sep 04, 2015 10:48 am

Simon,

Glad to hear about your clean scans. Almost in the same boat as you. Diagnosed at 37 years last November. Stage 4 with a couple of liver mets. Just finished chemo last June as so far so good. I envy the fact you've had a few beers. I just cant bring myself to have one, at least not for the first couple of years. Here's to us beating the crap out of this thing.

Best,

Dre
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: one year of chemo - Stage 4, 37 years old.

Postby BrownBagger » Fri Sep 04, 2015 10:58 am

I recommend Greek (active culture) yogurt for chemo. I eat it before and after my infusions, and it makes the digestive issues more tolerable. The bugs in the yogurt are good for your gut, since things like chemo and antibiotics tend to kill them off. This replaces them. I'd also highly recommend electrolyte supplements. You need extra doses of things like magnesium, phosphorus, etc. I use Nuuns Tabs, which dissolve in water. Like Gatorade without all the sugar and hype. It's especially nice at night, when you wake up with a dry mouth. A Nuuns Tab in a big glass of water hits the spot, and the electrolyte infusion seems to relax me and allow me to get back to sleep.

Finally, hydration is critical. Before, during and after chemo. Just makes everything go a lot better.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.


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