Who are the longest stage 4 survivor's on here?

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MikeManess
Posts: 90
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: Who are the longest stage 4 survivor's on here?

Postby MikeManess » Tue Jun 07, 2022 3:04 pm

I was diagnosed in 2016 - still alive and kicking! Still NED. For the newly diagnosed, stage 4 does not necessarily mean a death sentence.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

taexali
Posts: 12
Joined: Thu Jul 12, 2012 1:41 pm

Re: Who are the longest stage 4 survivor's on here?

Postby taexali » Tue Jun 07, 2022 6:07 pm

DX Stage 4 rectal + mets to lung.

Still going strong at 74!

Good luck & best wishes to all!
Male 75 yrs.
DX 7/2007 at age 60 with Stage IV 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 Skin Cancer- ugh!

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Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Who are the longest stage 4 survivor's on here?

Postby Jack&KatiesMommy » Wed Jun 22, 2022 11:01 am

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!
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

saltygirl
Posts: 78
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Who are the longest stage 4 survivor's on here?

Postby saltygirl » Wed Jun 22, 2022 12:18 pm

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. :D

roadrunner
Posts: 272
Joined: Sun Jan 12, 2020 8:46 pm

Re: Who are the longest stage 4 survivor's on here?

Postby roadrunner » Wed Jun 22, 2022 12:30 pm

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.
7/19: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign

michelle c
Posts: 1926
Joined: Wed Dec 02, 2009 3:58 am

Re: Who are the longest stage 4 survivor's on here?

Postby michelle c » Mon Jul 18, 2022 6:29 am

13 years! I just pop in occasionally now.
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

Rikimaroo
Posts: 421
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Who are the longest stage 4 survivor's on here?

Postby Rikimaroo » Mon Jul 18, 2022 4:31 pm

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.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.


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