My personal gratitude for Colon Talk--you ALL are the best!

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Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

My personal gratitude for Colon Talk--you ALL are the best!

Postby Soccermom2boys » Fri May 06, 2016 10:56 pm

I met with a genetic counselor today as my rectal cancer diagnosis came out of no where in my family health history plus my earlier age onset. At any rate, as I was sitting there and discussing with her what I knew, it really hit me how much I have learned and how basically I owe it all to my daily check ins on this forum. Time and time again it has been from the knowledge I learned from reading other's posts/stories/questions that I know all that I do and what to possibly expect and what to ask and that most importantly (to me anyway) that I am not alone in my feelings with dealing with this beast. I just can't say enough how invaluable it has been to me to have all of you at my disposal 24/7 to go to for answers. I don't generally post much, funny in that I am shy like that as this is online, but I read a lot and take it all in and do my best to keep it all tucked away for future reference as needed. And not only are you all so willing to share, but so many of you are beautifully honest in what you are dealing with, and the empathy and support is second to none--and yet we will all most likely never meet each other in person, we are genuine strangers to each other physically. As much as I wish I was never picked for team CRC, I can't imagine surviving through all of this without you all and this forum. While it totally sucks we are all in this together, damn we are so lucky to have each other! Thank you!
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

Nik Colon

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby Nik Colon » Fri May 06, 2016 11:04 pm

I completely agree. Couldn't have said it better!

User avatar
wrend
Posts: 27
Joined: Wed Dec 23, 2015 7:46 pm
Location: Los Angeles

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby wrend » Sat May 07, 2016 2:21 am

I heartily agree!
Wendy
Dx: RC 12/15/15, Age 57
Stage IIIB T3N1M0, 2 lymph nodes
G2: moderately differentiated
6 cm mass, 50% circumferential
7-13 cm from anal verge
Adenocarcinoma, MSS
CEA 5
Xeloda/IMRT 1/25/16 -2/26/26
uLar 5/11/16
pT3N0M0
0/13 lymph nodes
8 rounds Oxi/Fu5 6/16/16-9/21/16
CEA 1.2 10/15/16
Reversal 11/10/16

tarheelmom
Posts: 168
Joined: Mon Mar 07, 2016 5:55 pm

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby tarheelmom » Sat May 07, 2016 7:04 am

Totally agree!
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

Delinda2
Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby Delinda2 » Sat May 07, 2016 7:22 am

Well said! And you my friend are such a key contributor.
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby AppleTree » Sat May 07, 2016 11:08 am

Yes! I am drawn like a moth to the light. I want to hear the experiences of others who have gone through it before me. The triumphs and pitfalls. Especially for me, I was diagnosed after a mere 4 months of language classes (Feb). All the forms are in a different language. The techs had to pantomime that I had to hold my breath going through a machine for clear images. I make index cards of words to tell the nurses when I see them. Normally, they just have to look at me and know what I need...but still. All through chemo and radiation I went to language class every day...but it is a slow process. So, I really count on this board to learn what to expect, what questions to write down - translated on my index cards. My surgery is in June and I am trying so hard to practice the language with relevant words so I will at least be able to communicate my basic needs post-op. So thank you to everyone for making this trip a little less scary for me!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby AnnClare » Sat May 07, 2016 4:14 pm

I agree. This forum and its members have been such an amazing resource. The support here is outstanding, and while none of us wants to be here, it's great that we've found a place where we can share our experiences, thoughts, and feelings - the good, the bad, the ugly, and the beautiful. :)
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby jhocno197 » Sat May 07, 2016 6:09 pm

Amen. I am so thankful for this group.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
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

Snapfish
Posts: 50
Joined: Mon Oct 05, 2015 10:42 pm
Location: Washington, DC (dad in Houston, TX)

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby Snapfish » Sat May 07, 2016 7:17 pm

I could not agree more. I am so thankful for those willing to share so I am better able to help my dad.
Daughter to 70-year old father dx 2015-Sept-28: Stage IV adenocarcinoma with signet ring cell features
Sigmoid colon primary with peri mets
MSS; RAS wild-type; mutation in exon 8 of p53

2015-Oct: Began FOLFOX-6 at MDA; CEA was 15.1 at baseline
2016-Feb: CEA 5.7; 10 full rounds of FOLFOX-6 completed
2016-Mar-3: Began FOLFIRI
chemo, chemo, chemo
2017-Jan: Total of 29 cycles of chemo down. Back on FOLFOX again after FOLFIRI fail. CEA now 118.

User avatar
Cowgirl918
Posts: 326
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby Cowgirl918 » Sun May 08, 2016 12:25 am

This group is my lifeline. I agree that we would not elect to join this club but we are so very lucky to have each other. It is one of the only "constants" in my life right now. Thanks to all.
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%
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
7/26/2023 Neuroendocrine mass small bowel, two mesenteric lymph nodes
9/1/2023 Small bowel resection jejunum and lymph nodes removed mesentery

Nik Colon

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby Nik Colon » Sun May 08, 2016 1:16 am

AppleTree wrote:Yes! I am drawn like a moth to the light. I want to hear the experiences of others who have gone through it before me. The triumphs and pitfalls. Especially for me, I was diagnosed after a mere 4 months of language classes (Feb). All the forms are in a different language. The techs had to pantomime that I had to hold my breath going through a machine for clear images. I make index cards of words to tell the nurses when I see them. Normally, they just have to look at me and know what I need...but still. All through chemo and radiation I went to language class every day...but it is a slow process. So, I really count on this board to learn what to expect, what questions to write down - translated on my index cards. My surgery is in June and I am trying so hard to practice the language with relevant words so I will at least be able to communicate my basic needs post-op. So thank you to everyone for making this trip a little less scary for me!

Can I ask where/what language you are learning?

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby AppleTree » Sun May 08, 2016 3:11 am

Nik - I am in Austria, so learning German. The city (Graz) has top of the line doctors, equipment, etc. My team of surgeons only do colon/rectal surgeries. I feel that I am in really good hands! Everyone is super nice to me. The doctors speak English. But I feel that I get condensed information. Not all the nurses speak English and most of the techs do not. When I was in the hospital for 3 days, my roommates did not speak English.

So, I feel it is important to learn as many words that I may need - even if my grammar isn't perfect, at least I will be able to communicate! Going to language school every day really helps to keep my mind off of things! As soon as I pass my language certificate class, I will start University classes to further my degree. One step at a time, I guess!

The main thing, despite language issues, is that I feel I am getting great care and that gives me alot of peace. But, yeah - everything has been overwhelming.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

Nik Colon

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby Nik Colon » Sun May 08, 2016 9:13 pm

AppleTree wrote:Nik - I am in Austria, so learning German. The city (Graz) has top of the line doctors, equipment, etc. My team of surgeons only do colon/rectal surgeries. I feel that I am in really good hands! Everyone is super nice to me. The doctors speak English. But I feel that I get condensed information. Not all the nurses speak English and most of the techs do not. When I was in the hospital for 3 days, my roommates did not speak English.

So, I feel it is important to learn as many words that I may need - even if my grammar isn't perfect, at least I will be able to communicate! Going to language school every day really helps to keep my mind off of things! As soon as I pass my language certificate class, I will start University classes to further my degree. One step at a time, I guess!

The main thing, despite language issues, is that I feel I am getting great care and that gives me alot of peace. But, yeah - everything has been overwhelming.

That's great! Best wishes

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: My personal gratitude for Colon Talk--you ALL are the best!

Postby DarknessEmbraced » Mon May 09, 2016 11:22 am

I completely agree! This board has been and continues to be invaluable to me! :D
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! :)


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