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thubler
Posts: 59
Joined: Tue Sep 27, 2016 9:22 am

Hello new to site

Postby thubler » Tue Sep 27, 2016 9:35 am

Hello. I just wanted to connect with some people that are experiencing the same situation as I am. I am a 36 yoa happily married father of 4. On May 11 2016 I was admitted to the hospital for severe anemia. A CT scan showed inflammation around my colon and two days later I was diagnosed with colon cancer. I had two tumors on the right side of my colon. The next day I had surgery to remove my right side and part of my transverse colon as well as my appendix. Later tests showed that I had a stage 1 and stage 3 tumors with two lymph nodes effected. I later tested positive for lynch syndrome. My grandfather had died of colon cancer at 66 and my aunt had endometrial cancer at 36. That was the only cancers in our family buy we have the dreaded gene. I had my port placed three weeks later and currently I have four FOLFOX treatments left. Luckily I have not had many side effects from the Chemo I just get tired and feel like Im in a fog for two or so days then I am fine until the next treatment. I just cant wait to be done with chemo hopefully forever! I have read numerous posts on this website and they are very inspiring. If anyone wants to reach out or can provide any feedback feel free. Thanks.
III b CC @ 35 yoa.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Resection 05/16
2/41 nodes +
FOLFOX 6/16-11/20/16
Clear Endoscopy and Colonoscopy 12/6/16, 02/13/18,01/24/19,02/27/20
CT 02/07/17 enlarged mesenteric node.
Clear PET 02/15/17
Stable CT 06/05/17,10/16/17,04/02/18, 01/08/19, 01/14/20
Deported 11/03/17

DarknessEmbraced
Posts: 3525
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Hello new to site

Postby DarknessEmbraced » Tue Sep 27, 2016 11:02 am

Welcome to the board. Sorry for the reason you are here.*hugs* I'm sorry for the loss of your grandfather.*hugs* I'm glad your chemo is going well. Sorry to hear you are Lynch positive. I am having genetic testing done now. I'm not sure when the results will be available.
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! :)

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Hello new to site

Postby Deb m » Tue Sep 27, 2016 1:13 pm

My husbands tumor was also on his rt side., to be specific in his cecum. He also like you had his appendix removed. He completed his 12 hits of folfox in 2011 and has been ned since. He however was not positive for lynch which surprised us because he has many family members on his side of the family with all different kinds of cancer including two of his three siblings!

Hope all goes well for you and am glad to hear that the treatments haven't been to bad for you

deb m

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

Re: Hello new to site

Postby BeansMama » Tue Sep 27, 2016 7:27 pm

I am sorry you had to find this board but I am glad you did. You will find an amazing amount of support here.

I am Lynch positive as well. The benefit to knowing you are is your doctors can watch you much more carefully and catch any future issues sooner.

I have also read through my research that those of us with Lynch respond to treatments very well. Do you know which gene your mutation is in? Mine is the MSH6 gene.

Lynch can be scary when you read the list of cancers associated with it. It's anyone else in your family being screened for Lynch? If not they should, your positive result should help them in getting their insurance to cover the testing. They would also only need to be tested for the specific mutation you have.

So far in my family we have had three of my four siblings and one of my aunts come back with a positive result that I know of.

I will add you to my prayer list, I hope your treatments continue to go well.
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

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: Hello new to site

Postby AbbyDoo » Wed Sep 28, 2016 2:04 am

Hi Thubler,
Welcome to the board there is a wealth of info here and people do understand what your going threw here. This is a good place to write your experiences so others newly diagnosed can find some hope and not feel alone.
I'm glad your handling your treatment well and it almost over.
Hang in there and stay positive. :D
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Hello new to site

Postby Swirdfish » Wed Sep 28, 2016 6:05 am

thubler wrote:Hello. I just wanted to connect with some people that are experiencing the same situation as I am. I am a 36 yoa happily married father of 4. On May 11 2016 I was admitted to the hospital for severe anemia. A CT scan showed inflammation around my colon and two days later I was diagnosed with colon cancer. I had two tumors on the right side of my colon. The next day I had surgery to remove my right side and part of my transverse colon as well as my appendix. Later tests showed that I had a stage 1 and stage 3 tumors with two lymph nodes effected. I later tested positive for lynch syndrome. My grandfather had died of colon cancer at 66 and my aunt had endometrial cancer at 36. That was the only cancers in our family buy we have the dreaded gene. I had my port placed three weeks later and currently I have four FOLFOX treatments left. Luckily I have not had many side effects from the Chemo I just get tired and feel like Im in a fog for two or so days then I am fine until the next treatment. I just cant wait to be done with chemo hopefully forever! I have read numerous posts on this website and they are very inspiring. If anyone wants to reach out or can provide any feedback feel free. Thanks.


Sorry you had to join the 36 club hehe. I should update my signature. Your not alone. I wish you well in your treatment.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

HoneyJack
Posts: 45
Joined: Thu Nov 13, 2014 11:32 pm

Re: Hello new to site

Postby HoneyJack » Fri Sep 30, 2016 10:41 pm

Just wanted to say hello and wish you well. You've found a great place for support and advice.
Wife & mom
Right colectomy 4/2014 @41yrs old
Tubulovillous T2-N0-M0 0/30 nodes (located in Cecum)
Stage 1 colon well-mod differentiated
Lynch negative
NED

5/2014 Chest CT showed enlarged lymph nodes/biopsied Sarcoidosis! (Not symptomatic)
3 incisional hernias fixed 3/2016

User avatar
mmblz
Posts: 54
Joined: Sat Oct 10, 2015 3:03 pm

Re: Hello new to site

Postby mmblz » Sat Jul 21, 2018 6:50 am

Noticed a different post you made because our age, kids, and staging is so similar. I'm glad it sounds like you're doing well since treatment!
40yo married 16 years. 4 kids 12, 10, 7, 5
2015-09-21 colonoscopy finds tumor in sigmoid, partial obstruction
2015-09-22 CT no mets, path G2 adenocarcinoma, CEA 1.2
2015-09-29 lap hemicolectomy at MSKCC
2015-10-06 pT3 N1a M0 stage IIIB
2015-10-22 folfox started - 12 rounds, last 4 no oxaliplatin
2016-10-27 clear CT !

thubler
Posts: 59
Joined: Tue Sep 27, 2016 9:22 am

Re: Hello new to site

Postby thubler » Mon Jul 23, 2018 5:58 pm

mmblz wrote:Noticed a different post you made because our age, kids, and staging is so similar. I'm glad it sounds like you're doing well since treatment!


Thanks. I am definitely blessed! I was lucky that treatment wasn’t too bad. I just got pushed back from 6 to 9 months scans which is nice. After my next it well be once a year for scans and scopes.

Thanks for reaching out. It always helped to hear that I wasn’t the only one going throught this at a young age, and with a big family!

So I saw you had some clear scans posted on your signature. I hope you are still doing well.
III b CC @ 35 yoa.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Resection 05/16
2/41 nodes +
FOLFOX 6/16-11/20/16
Clear Endoscopy and Colonoscopy 12/6/16, 02/13/18,01/24/19,02/27/20
CT 02/07/17 enlarged mesenteric node.
Clear PET 02/15/17
Stable CT 06/05/17,10/16/17,04/02/18, 01/08/19, 01/14/20
Deported 11/03/17

User avatar
mobrouser
Posts: 156
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Hello new to site

Postby mobrouser » Mon Jul 23, 2018 8:13 pm

Is it just me, or does anyone else get a smile from the last line in your signature: "Deported" ?

I'm picturing you being sent to the land of no cancer.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

thubler
Posts: 59
Joined: Tue Sep 27, 2016 9:22 am

Re: Hello new to site

Postby thubler » Mon Jul 23, 2018 11:14 pm

mobrouser wrote:Is it just me, or does anyone else get a smile from the last line in your signature: "Deported" ?

I'm picturing you being sent to the land of no cancer.

8) mob



Thanks mob! My deportation was definitely one of the high points of this experience! I saw you are a stage 3er too. I hope you are doing well.
III b CC @ 35 yoa.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Resection 05/16
2/41 nodes +
FOLFOX 6/16-11/20/16
Clear Endoscopy and Colonoscopy 12/6/16, 02/13/18,01/24/19,02/27/20
CT 02/07/17 enlarged mesenteric node.
Clear PET 02/15/17
Stable CT 06/05/17,10/16/17,04/02/18, 01/08/19, 01/14/20
Deported 11/03/17

User avatar
mobrouser
Posts: 156
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Hello new to site

Postby mobrouser » Wed Jul 25, 2018 2:54 pm

I am, and thank you for asking. I have my 12th and last scheduled infusion on the 31st and then a CT scan on August 8th to find out where I'm at. I must say the anxiety is building...

I won't be deported as I have a PICC line, so I'll have to come up with a different term for its removal.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

User avatar
mmblz
Posts: 54
Joined: Sat Oct 10, 2015 3:03 pm

Re: Hello new to site

Postby mmblz » Thu Jul 26, 2018 9:23 pm

thubler wrote:
mmblz wrote:Noticed a different post you made because our age, kids, and staging is so similar. I'm glad it sounds like you're doing well since treatment!


Thanks. I am definitely blessed! I was lucky that treatment wasn’t too bad. I just got pushed back from 6 to 9 months scans which is nice. After my next it well be once a year for scans and scopes.

Thanks for reaching out. It always helped to hear that I wasn’t the only one going throught this at a young age, and with a big family!

So I saw you had some clear scans posted on your signature. I hope you are still doing well.


Everything has been clear and now approaching three years!
40yo married 16 years. 4 kids 12, 10, 7, 5
2015-09-21 colonoscopy finds tumor in sigmoid, partial obstruction
2015-09-22 CT no mets, path G2 adenocarcinoma, CEA 1.2
2015-09-29 lap hemicolectomy at MSKCC
2015-10-06 pT3 N1a M0 stage IIIB
2015-10-22 folfox started - 12 rounds, last 4 no oxaliplatin
2016-10-27 clear CT !

thubler
Posts: 59
Joined: Tue Sep 27, 2016 9:22 am

Re: Hello new to site

Postby thubler » Fri Jul 27, 2018 8:26 pm

mobrouser wrote:I am, and thank you for asking. I have my 12th and last scheduled infusion on the 31st and then a CT scan on August 8th to find out where I'm at. I must say the anxiety is building...

I won't be deported as I have a PICC line, so I'll have to come up with a different term for its removal.

8) mob


That is great news! Its such a surreal moment. I thought it would never come! Looking back its hard to believe that every 2 weeks for 6 months we were dealing with treatments. It felt great to throw my chemo fanny pack directly into the trash after my last infusion! I hope you are free and clear!

I still get anxious around my scan time. For some reason my onco office takes forever to get the results back which is frustrating!

I still have some “weird” issues from this experience. For me its smells. I will smell something and it reminds me of chemo, like our pantry for some reason and my onco office. Weird right? I had a check up last week and my bp was high. When my onco asked why I told him “because I hate it here” and he laughed. I can’t look into the infusion room when there. I have to walk past it. I hated going there because it was just a huge room with people who were fighting cancer. I had trouble going in to get flushed the year following treatment so I jumped on the opportunity to get deported!

I hope you continue to do well!
III b CC @ 35 yoa.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Resection 05/16
2/41 nodes +
FOLFOX 6/16-11/20/16
Clear Endoscopy and Colonoscopy 12/6/16, 02/13/18,01/24/19,02/27/20
CT 02/07/17 enlarged mesenteric node.
Clear PET 02/15/17
Stable CT 06/05/17,10/16/17,04/02/18, 01/08/19, 01/14/20
Deported 11/03/17

thubler
Posts: 59
Joined: Tue Sep 27, 2016 9:22 am

Re: Hello new to site

Postby thubler » Fri Jul 27, 2018 8:38 pm

mmblz wrote:
thubler wrote:
mmblz wrote:Noticed a different post you made because our age, kids, and staging is so similar. I'm glad it sounds like you're doing well since treatment!


Thanks. I am definitely blessed! I was lucky that treatment wasn’t too bad. I just got pushed back from 6 to 9 months scans which is nice. After my next it well be once a year for scans and scopes.

Thanks for reaching out. It always helped to hear that I wasn’t the only one going throught this at a young age, and with a big family!

So I saw you had some clear scans posted on your signature. I hope you are still doing well.


Everything has been clear and now approaching three years![/quo


That is great to hear! I count from my surgery day, which was the day after I found out I had the “gut rot” as I affectionately refer to it. I remember right before my surgery one OR nurse asked why I was having surgery and I told her “I have colon cancer”. She asked how long I had it and I said “exactly one day now”. It broke up the seriousness a little. I remember waking up and my wife correcting me when I told a visitor the day after my surgery that “I have cancer.” She was quick to correct me that “I HAD cancer”. Its funny how much just her saying that helped! So for me I am 2 years 2 months and some change cancer free! November will be two years out from my last chemo!

I am glad to hear you are doing so well!
III b CC @ 35 yoa.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Resection 05/16
2/41 nodes +
FOLFOX 6/16-11/20/16
Clear Endoscopy and Colonoscopy 12/6/16, 02/13/18,01/24/19,02/27/20
CT 02/07/17 enlarged mesenteric node.
Clear PET 02/15/17
Stable CT 06/05/17,10/16/17,04/02/18, 01/08/19, 01/14/20
Deported 11/03/17


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