Stage IV hope, 5 years NED...

[ff970]

I used to be more active on this forum, and although it's an incredible source of information I decided to look for another group/forum. I was looking for people closer in age and dealing with cancer and issues that surround young families, something that is quite difficult as colon cancer in people under 30 is somewhat rare.

It's been strange to see the transformation(s) the Colon Club has taken, there are so many people I remember... Sumit22, Vman1300 (Kevin), justsing, Brady, AugustWest, Lifes2short, missjv, NWgirl, KP, AngelaW, seussfan, JessiLeigh, CFightWhite, EMBJ, Terry, CRguy, Gaelen etc. etc.

We (my wife and I) formed a relationship with Jerseygirl (Nicole) that went on for over 2 years, we initiated contact after reading Nicole's story & found that it was quite similar to my wife's. We were absolutely heartbroken when we learned of her passing in Sept of last year.. still saddens us a lot. It's funny how you can feel so much for someone you've only communicated with via e-mail or IM. She got married in Feb '13, this was her wedding song :

https://www.youtube.com/watch?v=O1-4u9W-bns

My wife was diagnosed at 28, April 24/07 six days after our youngest was born (oldest was 14 months). She'd had abdominal pain for 3 months that her Obs. assumed was gas pains associated with her pregnancy. Her pain increased after our youngest arrived and she ended up having an emergency hemi-colectomy. They removed her primary tumor that was 10 cm in diameter as well as 27 lymph nodes of which 12 were cancerous. They also felt 2 small tumors on her liver that were each approx. 0.9 cm, later found out she'd had 3 tumors.

She went through 18 rounds of Folfox (clinical trial at the time) over the course of a year, to see how hard she fought was incredible. I don't care if it sounds lame, she was and still is my hero. We went back the surgeon who'd operated on her initially for what we thought was a pre-op and he had her in tears in about 5 min. His suggestion was that she stop chemo (already had), no surgery and wait 6 to 8 months "to see what happens". He'd told her that because she'd had node involvement that she should just go home and wait. We had a couple discussions after that one and she did have her 2nd surgery, the surgeon couldn't believe the change he'd witnessed in a years time. My wife and I both think that after he'd operated on her initially, he wrote her off. I don't blame him as he deals with this stuff every day, but I hope he'd remember her the next time he has a similar pt in his office.

Anyway, during that second surgery they took a biopsy of one of the spots in her liver and found pools of mucin (she was diagnosed with mucinous adenocarcinoma). She ended up having 65% of her liver resected less than 2 months later, and when she recovered from that she had another 5 rounds of adjuvent Folfox. That took her to February '09.

She just had a scan in March "No change from scan dated 2013". That makes her 5+ years NED and April is her 7 year dx anniversary.. I can remember reading posts like this 7 years ago, and how I felt about them which is why I came back to post this now.

Our old user name was cbr600319 if you care to search our posts..

Take care

[NedPlease]

Thanks for posting good news- always welcome and always needed. Very happy for you!

[anitaw]

Thank you so much for posting! I am so happy for you, your wife, and your family! Stories like yours give me hope and encouragement. I wish you only the best.

[LKGower]

Love hearing a good stage Iv survivor story!

Thanks for posting

Lisa

[Rheaeliza]

Thank you for posting! I was diagnosed 2012, stage 4b, 30 years old, and Jerseygirl actually reached out to me in the beginning of my experience. We had similar spread and the same age. Like you said, it was amazing the bonds you form over emails. I'm so glad that she spent the last year of her life the way she did, traveling, having a drink when she felt like it, getting married! She inspired me to do some of those things during treatment.

I was in the hospital recovering from hipec surgery when she passed. I was heartbroken and I still am. I sometimes go to her Facebook page and look through her pictures. What I bright light. I'm crying as I write this.

I was originally told surgery would not be an option for me, but less than a year later and a few aggressive surgeries and I am no longer on chemo and have been NED since November. I'm very happy for your wife and family and I hope to see that marker myself someday!

Best,
Rhea

[cecioboe]

Congratulations! And thank you so much for posting ths. I hope Jim will join you in his 5 year anniversary (in a couple years).

Ceci

[CRguy]

Our old user name was cbr600319 if you care to search our posts.

NO need for me to search my friend
Thank you for staying around / coming back.

Glad things are moving forward on a positive trajectory for you.
Hope you got to enjoy the JUNOs ???? .... B.T.O. .... long overdue ...!!!!!
(( I actually have personal Guess Who "connections" from the 60's .... ...Burton, Jim, Randy.....))

GLAD you survived WINTER !!!! ...... Portage and Main and all !!!!!! (( BTDT ! ))

Harmony
Cheers
MEGA VIBES for more good things in your future

CRguy
ALWAYS on some kind of Journey

"Taking Care of Business ....... So long Bannatyne"

[Kris10Dee]

Thank you so much for taking the time to post this! I truly appreciate it.
~Kristin

[missjv]

hey it's missjv i am still here lol!!! 8 years now as of this month and i am doing great!!!

missjv

[andy21]

Thanks for the hopeful story.
It gives a big hope to stage IV but also is inspirational for Stage III and Stage II.

I say that this is the ideal Herman Cain scenario who perhaps is the most famous long term stage IV CC survivor.

http://www.washingtonpost.com/national/ ... story.html

[ff970]

For those of you who get a little hope from my post, that is/was my intention. There's so much sh*t and bad news that comes along with this crap that you need something to hope for, we used to appreciate similar posts. We're always mindful of those who never get the news they're hoping for and understand the heartache/frustration that may come from reading a post like this. But, there has to be some good to go along with the bad. Hope kept us going..

CRguy, good to "see" you my friend ! Nope, no Juno's for me as I happened to find myself at work that particular evening. Although I can't say with any degree of certainty that I would've been there had I been free that particular night ? Busy with stuff, you know ? Kids, work, & Steph just started back at work full-time. We have our "stuff" that fills what free time we have, the Juno's just didn't make the cut I guess ? Ya, we had quite the (seemed perpetual) Winter over here... sucked A$$ !! But, things seem to be on the up and up now which is a welcome change !

Hi Judy !! I was wondering if you were still floating around here ? I trust you've been doing/feeling well ? I was glad to see your reply, loved seeing your username pop up ! Is there anyone else from years past (class of 2007 ?) that still posts ? Of course, so many have been lost.. but sure is nice to know that there are a few friends still floating around out there. AugustWest comes to mind, don't suppose he's been around hey ?

Steph's been doing very well, but has been dealing with migranes/tension headaches for the past 3 years. I've taken her to 3 different specialists trying to get them figured out, a head/neck surgeon, and two neurologists trying to figure out the cause. She's got a solitary enlarged node in her neck (finding that on a Dr's visit was a real treat !), thought for sure we were gonna find some brain mets with the scan results on that one - luckily that wasn't the case. She's tried 5 or 6 different meds, none have made any sort of difference. But, she's still here.. so we'll keep smiling !

Take care

AL, Steph & the boys..

[Maia]

What a wonderful post, thank you so much. And just looking at you together in that pic is heartwarming! You gave me a smile for the rest of the day, thank you : )
All the best of the world for you, the boys and the brave Steph.

[Nixma]

As you can see, in my signature, I am at the beginning of this journey. I have been lurking on this site for a while now. I just finished my 2nd chemo. I appreciate this post big time.

[missjv]

great photo!! i am doing great im staying busy with work i had an adrenal met pop up twice in the past couple years but that has been taken care of and im feeling great i get scanned a couple times a year other then that life is good. i am glad things are going good for you guys.

missjv

[horizon]

Great story. Thanks for sharing.