Personal support

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Nik Colon

Personal support

Postby Nik Colon » Sat Jul 02, 2016 4:21 am

I wanted to say, this forum has helped me in many ways. I have met one of my best friends here and others. Some don't post here currently, but it's this forum that brought us together and I am thankful for that. I am always here to talk if needed, so feel free to pm me. I wish everyone the best.

Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: Personal support

Postby AussieAssCancer » Sat Jul 02, 2016 5:39 am

Can I say Nik that in the short time I've posted (and lurked) I've always admired the advice and empathy you give. It's a shitty deal all round and nobody wants to be here but it's a great place because of people like you! Take it easy
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog

Posts: 34
Joined: Mon May 16, 2016 4:36 am

Re: Personal support

Postby Newmol » Sat Jul 02, 2016 6:18 am

I also have only been coming to this website for a short time but the people - including you Nik - here have been so kind, encouraging, and informative. I am thankful for all of you.
Routine colonoscopy 4/19/16 tubulovilois adenoma partially removed piecemeal - high grade dysplasia
Follow-up colonoscop 5/11/16 partial removal of remnants - suspicion of intra mucosal carcinoma
Right Hemicolectomy 6/7/16 margins and 39 lymph nodes - negative

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Posts: 86
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: Personal support

Postby MikeManess » Sat Jul 02, 2016 11:45 am

Because of their schedule, etc, doctors don't go into great detail when explaining things to you. They cover the basics, but that's about all. Places like this forum, and people like Nik, are a great source of information and comfort to those of us that are facing the unknown with this terrible disease. Thanks Nik, plus the others that are further along in this fight for being willing to share your experiences, knowledge, and research so we know what to expect as time goes on.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

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Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Personal support

Postby BeansMama » Sat Jul 02, 2016 1:43 pm

Thank you for all you do for everyone here Nik.

For me personally you have been a great help since I first found this board.

I hope to provide the same support to others as well. You are truly appreciated :D
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: Personal support

Postby Cowgirl918 » Sat Jul 02, 2016 7:40 pm

This site and everyone here have become my everyday "go to" for information and support. I have never met any of you face to face but know that you are my friends. I miss Vilca. Planning a trip to Florida before my next procedure in early August. Having this place of refuge makes me feel better about the next round. Take care everyone and thanks.
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Personal support

Postby Soccermom2boys » Sat Jul 02, 2016 7:46 pm

Could not agree more with everything everyone has said! I check on here at least once a day--even though we have never met face to face you all feel family like to me and I look for your updates to make sure all of my peeps are doing ok and hanging in there, even through the suckiest of times. Thanks Nik for ALL that you do to help as many of us as possible and for starting this thread--always nice to be able to get a chance to say how much I appreciate everyone on here!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

Posts: 3545
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Personal support

Postby DarknessEmbraced » Sat Jul 02, 2016 8:57 pm

I'm thankful for you Nik and everyone else on this forum! I feel accepted here, can ask questions, share knowledge and both give and receive support! I would be completely lost without this place! We are family!
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Personal support

Postby jhocno197 » Sat Jul 02, 2016 10:02 pm

DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

Nik Colon

Re: Personal support

Postby Nik Colon » Sat Jul 02, 2016 11:26 pm

Thank you for all the replies and kind words. Everyone here is amazing, new and old posters alike. All questions, words, experience, etc, makes this community what it is. It is a combination of everyone that makes this place great and so helpful. Again, thank you all, everyone, for sharing.

Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Personal support

Postby Pita » Thu Jul 07, 2016 1:03 am

Was very fortunate to find this place, remember cracking up every time I thought of the name "Colon Talk/Colon Club". Everyone is so kind and willing to share, help and encourage others. I may not post every day but I'm here every day and some days this forum is what keeps me going. Thank you (((Nik))) for starting this post and thanks to (((everyone))) that reaches out...
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

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