The Colon Club

I was diagnosed in 2016 - still alive and kicking! Still NED. For the newly diagnosed, stage 4 does not necessarily mean a death sentence.

DX Stage 4 rectal + mets to lung.

Still going strong at 74!

Good luck & best wishes to all!

It will be 11 years for me in August 2022. I had massive amounts of tumors in my liver and some in my lungs. I was 46 at the time and my oncologist gave me 12-22 months to live with treatment. I found Dr. Kemeny who saved my life with the HAI pump and you holistic thinking. And my new local oncologist (Jeffrey VanDeusen) fought my insurance company to get me approved for Keytruda back in 2018 based on moderate tumor burden (11) in my cancer dna (I was/am MSS which is not supposed to respond to Keytruda or the PD1 immunotherapies but I did.) I have had lots and lots of chemo and surgery over the last 10+ years..but I am here today (NED) thanks to some amazing doctors and a lot of self-advocating/research, fighting. My children who were 8 1/2 & 4 1/2 when I was diagnosed and given a death sentence are now 19 and 15!

I am SO happy for you!!! That is truly amazing story. Congratulations to your NED. With your tumor burden. Has your tumor burden increased over the years? Has your cancer mutated to different mutations that you didn’t have before? I am stage 4 ( 1-2 lymph nodes near the colon) with braf and kras mutations. Originally it was believed braf and kras are mutually exclusive. Well, not in my case. I had folfoxiri 6 treatments. Than surgery and no cancer cells were found anywhere from the pathology. Than I continued 5 more treatments. I am in full remission for 18 months. Not sure what the future will bring. I know my case is not standard at all. Kid are 18 and 21. Daughter is planning on med school.

JackandKatiesMommy:

I usually post to try to provide information or humor (when I can), but I had to respond to your post on this thread. Most long term survivals in the Stage 4 context are about a great immune system, timing, and luck, but yours is different. You show us all what tenacity and courage can sometimes do even in very difficult circumstances and against long odds. Bravo! to you and your team(s). A truly incredible story. I hope someday your kids revel
in amazement and gratitude at what you were able to accomplish. Humbling.

13 years! I just pop in occasionally now.

I am still here fighting since Dec 2016. Ups and Downs, currently stable, back on FolFiri to get things back down, but dealing with it. Have some cancer pain, not NED yet, but still alive and able to work, sleep, play games and enjoy life the best I can.

Male 76 yrs.
DX 7/2007 at age 60 with Stage IVa Rectal with mets to lung
8/2007 to 9/2007 Chemo (Fufa?) & Radiation
12/2007 LAR + Colonic J-Pouch + Ileo
1/2008 to 9/2008 Chemo (Oxaliplatin) 15 Sessions!
11/2008 Ileo reversal
5/2009 Left lower lobectomy
11/2021 Still NED, 01/21, 1/22,.... Skin Cancer- ugh!

Still going strong at 76!

Good luck & best wishes to all
from Taexali

I was 7 years in October. In October 2015 I had a metastasis to my right ovary and had it removed. Unfortunately, after 7 yrs of being NED, I just had my left cancerous ovary removed. Pretty sad about this, but I know I am very lucky, too. I just worry that I will run out of body parts soon. I am 52.

I just made 10 years from stage in diagnosis in Dec of 2012. Headed back to MDA tomorrow for a checkup and scan. Been NED for over 4 years now!! Much love to all of you!

Stephen

Well done Stevieb .
Great to see so many long term survivors on this thread .
Stu

Just logged in after a very long time. Life gets in the way, you know. Still here and doing well. 8 years from diagnosis last November. Wishing everyone here the best.

it hasn't been an easy road, or even a symptom free road, but he's still here. diagnosed and surgery 2015. port that is still being used inserted december 2015!!!!

So happy to see all the amazing stories!
I am reaching 8 years myself.
Thank you cptmac whom I probably own my life. I found her post on a forum and pursued her line of treatment. Thank you Cynthia! You encouraged me at the beginning of this road. I followed you to MSKCC where Dr Kemeny took a good care of me.
I have been doing well. Since 2021 I go once a year for checkups. My HAI pump got removed in the middle of Covid 2 years ago. My twins are 14 this spring and going to high school soon.
All the best!

Diagnosed stage 4 @ 29 years old. 1 met to liver and colon. I am now 35. Still here but it came back in the pre sacral area only for now but still here....