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: 17
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 77 yrs.
DX 7/11/2007 at age 61 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, with two(?) lymph nodes removed.
11/2022 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: 152
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
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

roadrunner
Posts: 446
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: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (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 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

michelle c
Posts: 1929
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: 436
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.

taexali
Posts: 17
Joined: Thu Jul 12, 2012 1:41 pm

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

Postby taexali » Mon Nov 07, 2022 4:50 pm

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
Male 77 yrs.
DX 7/11/2007 at age 61 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, with two(?) lymph nodes removed.
11/2022 Still NED
01/21 Skin Cancer- ugh!

deha50
Posts: 31
Joined: Fri Nov 20, 2020 8:24 pm

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

Postby deha50 » Sun Dec 18, 2022 7:46 pm

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.

stevieb
Posts: 410
Joined: Sat Feb 09, 2013 12:26 am

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

Postby stevieb » Mon Jan 02, 2023 10:51 pm

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
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

stu
Posts: 1612
Joined: Sat Aug 17, 2013 5:46 pm

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

Postby stu » Tue Jan 03, 2023 6:37 pm

Well done Stevieb .
Great to see so many long term survivors on this thread .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

plastikos
Posts: 351
Joined: Wed Jan 14, 2015 6:09 am

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

Postby plastikos » Wed Feb 01, 2023 11:22 am

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.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

pete305
Posts: 27
Joined: Mon Nov 23, 2015 8:02 am
Location: ohio

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

Postby pete305 » Tue Feb 21, 2023 6:02 pm

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!!!!
male, initial dx T3 N1c M0 - Stage IIIb in 2015
sigmoid colon resection 2015
folfox 2015-2016, 8 treatmts then allergic reaction to oxaliplatin
folfiri 2017 due to liver mets, RFA
folfiri 2018 new liver mets,
5FU and Avastin 2023 abdominal wall mets
lung mets from prostate cancer 2023 - zytiga and lupronRFA

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

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

Postby mariane » Mon Mar 20, 2023 10:46 am

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!
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

jumpman50512
Posts: 43
Joined: Thu Jan 10, 2019 10:36 pm

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

Postby jumpman50512 » Tue Mar 21, 2023 9:57 pm

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....
Stage IV Survivor Currently (Diagnosed @ 29) currently 36
1 Met to the Liver
Colo-Rectal cancer surgery
12 rounds of chemo + Radiation + Oral Chemo
12/1/21 Colonoscopy Clean
2/1/21 CT scan Clean
2/1/21 CEA at 5.8
4/1/21 CEA currently at 8.8
5/27/21 CEA currently at 13
Signatera Positive :cry:
Clean CT Scan 4/15/21
It's back :cry: 6/24/21
7/10/21 - 4/10/21 = 10 rounds of folfiry
On Xeloda for a while :(
Chemo pills + chemo + Vectibix currently


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