survivor since 1991

Please feel free to read, share your thoughts, your stories and connect with others!
Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: survivor since 1991

Postby Mercy110 » Fri Aug 10, 2018 9:55 am

Just realised it is such an old post (from 2009, seriously??). You are definitely an inspiring survivor. Advice well-received :D God bless.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: survivor since 1991

Postby tater » Fri Aug 10, 2018 10:50 pm

thanks for the check in it helps us who are trying to be early survivors.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

User avatar
CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

Re: survivor since 1991

Postby CRguy » Sat Aug 11, 2018 2:12 am

bomberbob wrote:I am still alive. Checked every year. Doc takes the polyps before they do harm. DO NOT GIVE UP. Barbie dolls with the grandkids are gone. They are driving cars now. I repeat. Do not give up.
Bomberbob


WORD

for everyone
for ever

WORD !

Thanks Bomberbob
You are one of us
and we all wanna be YOU !

Cheers and Harmony on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: survivor since 1991

Postby Ron50 » Sat Aug 11, 2018 8:21 am

Hi Bomberbob,
Congratulations on your survival. I understand your sentiments completely. Sometimes the medical profession forget that once you have had cancer you are in the zone and will always be at risk of developing new ones. I had to fight to have my last colonoscopy performed. The board at the hospital believed I was no longer at risk but at just over three years since the previous one , it produced four tubular adenomas the largest over 11 mm. Fortunately they had not turned and I now have a report stating I am to have scopes every two years. Unlike you I had 48 sessions of some nasty chemo and suffer ongoing side effects from it. In jan next year I reach 21 years still cancer free. I tell everyone that will listen that surviving survival is not easy. We really have to work at it. I was 48 at dx and am over 68 now. All the best Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: survivor since 1991

Postby Capri » Sat Aug 11, 2018 11:43 am

Bomberbob I beg to differ.

You DO have grand words of wisdom to share. You write simply and eloquently. Your words give me hope for my son and all others here who are fighting this battle. Thank you, thank you!
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

bomberbob
Posts: 5
Joined: Sun Oct 23, 2005 8:22 pm

Re: survivor since 1991

Postby bomberbob » Wed Jul 07, 2021 7:13 am

I am still alive. Four simple words. These are the four words you need to recite when you wake up in the morning and rub the sleep from your eyes. These are the words you say at the end of the day, exhausted. Tired, chemo sick, it doesn't matter. Say the words. Say them with your game face on. I turn 64 this month, and I am still not safe. I go for a flex sigmoidoscopy every year and they burn off the beginnings of tumors. If I could look each of you in the eyes and give you a hug and words of encouragement I would, but I can't. All I can do is type a few lines here, and the rest is up to you. When my father was diagnosed with colon cancer, he gave up. He retreated to his bedroom and watched ESPN on the TV, and he slowly wasted away. Do not do what he did. Please. You need to focus your energy like a laser beam on fighting your illness.
Now for the quiz: What are the four words you need to say twice a day?

User avatar
CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

Re: survivor since 1991

Postby CRguy » Thu Jul 08, 2021 1:34 am

I AM STILL ALIVE

WORD !!!!!!!
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Xndman
Posts: 12
Joined: Sat Jun 26, 2021 4:07 am

Re: survivor since 1991

Postby Xndman » Sun Jul 11, 2021 8:35 am

Congrats bomberbob!

I too had cancer in '91 (at 21) and carry the gene (Lynch syndrome). We had my kids tested when they hit 20 and I passed it on to one of them.

My first surgery in '91 the doc took out the part of the colon with the tumor and resected the rest. Had 2x yearly colonoscopies for 5 years, then annually after that. As I hit 50, the colonoscopies started to show more and more aggressive polyps. So I had my colon removed in October, had an ileostomy for 7 months, and now I'm just about 7 weeks post ileostomy reversal surgery. I'm slowly getting a handle on things and even went to a baseball game the other night.

Keep updating us your aliveness and continue to fight everyone else!

Vana3
Posts: 59
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: survivor since 1991

Postby Vana3 » Sun Jul 11, 2021 11:22 pm

Thank you Bomberbob........THANK YOU!!!!

This recent post.... the words you wrote, it brought tears to my eyes

I am still alive


With gratitude and light,

Vana
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5
5 cm tumor in cecum removed, 17 + out of 45 LN
Cea 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET liver spots
9/19 - 3/20 FOLFOX
1/20 CEA 3.6,4.4, 4.6, 4.6
Liver resect 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB CRC
post surgery cea 2.6
11/20 clear scans
2/21 clear scans
4/21 spleen met
5/21 pet scan picks up subtle concerns in liver as well as confirms spleen
Cea 4.6
5/21 to current folfiri
Cea 10

bomberbob
Posts: 5
Joined: Sun Oct 23, 2005 8:22 pm

Re: survivor since 1991

Postby bomberbob » Mon Oct 16, 2023 2:50 pm

Hi
I am still alive. Diagnosed with prostate cancer November of 2021. My previous surgeries and internal plumbing modifications complicated what the doctors at the University of Iowa were able to do. We did what we could, some radiation treatments, and two years of hormone shots. January I go in and have my PSA level checked to see if they got it all.
So why talk about prostate cancer on a forum devoted to colon cancer? Because in my opinion, cancer is cancer. Colon, breast, brain, prostate, lung, different locations in our bodies, different symptoms, some treatments are different, some are the same. Most of these treatments are really tough, it comes close to killing you but since cancer is weaker than you are, it dies first. Its like a medical version of playing chicken with cancer. Don't give up, keep your foot on the gas and stay on the road to recovery. Cancer will chicken out and roll down into the ditch. I don't care how big cancers headlights get and how close it seems, its pedal to the metal. I don't know how else to put this.

Did I ever share with you my dads experience with colon cancer? Maybe I did, I will give you a brief recount. He was diagnosed in his late 40s. Did some radiation, it didn't seem to help, so he went home and retreated to his bedroom and just wasted away and died. He just gave up. Watched ESPN on a little portable TV. I look at photos of him out on the front porch. His eyes were not of a sick man fighting for his life, they were the eyes of a beaten man who had given up.

Please do not give up. God has given us bodies with tremendous abilities to heal. We can also do without some organs that we were born with. I haven't had a colon since 91. Have a bag on your side? Been there, done that. Used to run 5 miles a day with a ileostomy bag. Had to add tape to keep it from coming loose, but I wasn't going to allow it to slow me down. And it didn't.
Don't get me wrong, I am not superman, I am not immortal. I will die eventually, but God put me here to live out my life. So I will do that, packing as much love and empathy for others into the time he has given me.
So you tell yourself in the morning, and at night before you drift off to sleep:
"I am still alive"
"I will not give up"

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: survivor since 1991

Postby beach sunrise » Tue Oct 17, 2023 8:08 am

Thank you for coming back to give your testimony!
You wear the badge proudly.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 17 guests