Any Stage IV long term survivors here?

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Mattie
Posts: 50
Joined: Fri Mar 07, 2014 1:06 am

Re: Any Stage IV long term survivors here?

Postby Mattie » Wed Apr 27, 2016 6:51 pm

6 years for me. Still doing okay.
4/10 debulk, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
10/16 fractured rib due to previous rad treatment. healing slowly
8/17 NED! Dropping xeloda. Avastin only.

NedPlease
Posts: 522
Joined: Fri Mar 23, 2012 3:56 pm

Re: Any Stage IV long term survivors here?

Postby NedPlease » Wed Apr 27, 2016 8:13 pm

Still doing well and readying for my scan on May 20 that will mark six years since dx. Crossing fingers and saying prayers that my good health continues.

Wishing all of us the best.

Hang on to your hope,
N
Last edited by NedPlease on Thu Apr 28, 2016 9:18 pm, edited 1 time in total.
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 7/17 Clear Scans
Today- NED

mariane
Posts: 574
Joined: Sun Sep 13, 2015 6:16 pm

Re: Any Stage IV long term survivors here?

Postby mariane » Wed Apr 27, 2016 10:30 pm

Ronswife,

Kanj wrote you about Dr Kemeny. If you want any info please let me know.
mom of 8 years old twins, dx @ 40 with upper rectal cancer, 10+ liver mets in 6/2015, 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!

wolverine
Posts: 2
Joined: Wed Apr 20, 2016 11:04 am

Re: Any Stage IV long term survivors here?

Postby wolverine » Thu Apr 28, 2016 10:48 am

Thank you everyone for sharing your experiences and stories!!! It is so helpful to know there are so many of you out there.
Do you attribute your successes to anything in particular - medical treatment, obviously, but did you do anything in addition to the standards? Supplements, immune support, alternative therapies, prayer? I don't want to sound like I'm soliciting for medical advice, I'm just curious about your experiences.


Thank you!!

EverySunriseCounts
Posts: 19
Joined: Sun Jan 17, 2016 1:25 pm

Re: Any Stage IV long term survivors here?

Postby EverySunriseCounts » Thu Apr 28, 2016 8:04 pm

One of my clients--a lean, healthy, and outdoorsy guy--informed me last summer that he was diagnosed with Stage IV.

In 1992.

Since it's 2016 now, that makes it... 24 years?

He's been fine ever since, has some neuropathy in his feet.
Partner:
-Diagnosed with Stage IV CRC 09/14, liver,lymph mets
-Started Folfox
- Emergency surgery 10/14, removed colon tumor, temp ileostomy
- New abdominal tumor 05/15 changed to Folfiri
- Added Avastin 09/15
- Stable scan (liver mets still present) 11/15
- Stable scan 02/16; chemo halted 03/25
-Ostomy reversal 05/16

Felicitym23
Posts: 32
Joined: Sun Jan 24, 2016 2:37 am
Facebook Username: Felicity Malyszko

Re: Any Stage IV long term survivors here?

Postby Felicitym23 » Fri Apr 29, 2016 1:52 am

I am not long term as such YET....... But I plan on being it.

I am stage 4. Told I had a couple of year most likely. At Christmas just gone.

I am only 46... January this year I started on an Auto Immune Therapy with my Folfox 6 treatment.

Come March and all my scans showed no cancer. I am now in remission and plan on staying that way.

I hope that gives you hope. Stage 4 these days is more like a chronic condition rather than a life sentence.
47yrs and mother to a 12 year child with autism
Cancer confirmed 9/23/15
Ext right hemicolectomy 10/13/15
35 Lymph nodes & 6 cancer told Stage 3C.
Nov 15 Oxy, Leucovorin, Flurourcil
CT and PET Scan told that cancer was now in abdo & neck lymph nodes.
STAGE 4 told two days before Christmas 2015.
Oxy, Leucovorin, Flurourcil & Panitumumab
MARCH 2016 NED - currently in remission. Stage 4.
After 3 sessions of Vectibux.
PET & CT SCAN July 16 - Still NED but still on chemo and Vectibix.

OrchardWriting
Posts: 53
Joined: Wed Nov 18, 2015 9:10 am

Re: Any Stage IV long term survivors here?

Postby OrchardWriting » Fri Apr 29, 2016 9:06 am

Also, poet Donald Hall, former poet laureate of the US, was diagnosed with stage iv in about 1995 and is still kicking around his farm.
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Ooops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13.

booklady
Posts: 2
Joined: Sat Apr 30, 2016 5:27 pm
Facebook Username: Ann Belcher

Re: Any Stage IV long term survivors here?

Postby booklady » Sat Apr 30, 2016 6:05 pm

Hello...I was diagnosed in 1995 with Duke's C colo-rectal cancer (with cancer through the wall of the colon and found in 1 of 14 lymph nodes removed). I had colon resection followed by 6 weeks of radiation therapy and 1 year of chemotherapy (5FU and Levamisol). I have been cancer free for 20 years. So please be encouraged....the statistics for survival at 5 years were less than 25%...My doctor gave me the best advice I have heard: "Remember, you are a person, and not a statistic!"

I can't say that I haven't had some rough times, but I'm alive and and have 6 great-grandchildren, and that is a great big bonus! I will be 76 years old this August, and I don't get around as well as I used to, but I would not trade those 20 years for anything.

I am always happy to be able to give people a bit of encouraging news when things are so scary and overwhelming. Stay strong! :)

Booklady

stu
Posts: 602
Joined: Sat Aug 17, 2013 5:46 pm

Re: Any Stage IV long term survivors here?

Postby stu » Sun May 01, 2016 11:04 am

Seven years this summer for my mum. Been bumps along the way but lives a great life in between.

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

folbright
Posts: 6
Joined: Sun May 01, 2016 9:50 pm

Re: Any Stage IV long term survivors here?

Postby folbright » Wed May 04, 2016 10:35 am

ronswife wrote:Hello All,
And if ALL of this wasn't BAD enough, his last CT scan showed blood clots in one of his lungs. The onc put him on Lovenox for an indefinite period of time. This is a real hardship for us financially, as it costs $330 per month for the daily injections!


After my PICC line was removed, a few weeks after surgery, I developed a huge blood clot in my arm and had to go on Lovenox which was brutal - I really hated getting two injections in the stomach every day and almost passed out a few times in the first week. I was prescribed the Lovenox in ER (I went because my arm suddenly got numb in the shower) and saw a blood clot specialist a few weeks later who wanted me to continue on it for an additional month to make sure. It cost us $330 a month as well (and that was our co-payment - insurance covered 80% of the actual cost but we were still left with $330!) and I protested and he agreed to let me switch to 20 mg of Xaralto tablets a day which was much more affordable and he said almost as good as Lovenox. The clot had completely cleared up by the next time I saw him a few weeks later and he cut my dosage to 10 mg a day as a prophylactic since I was starting chemo and was going to have a PICC line put back in (later replaced by a port) and haven't had a problem.

If you have or are getting a PICC line or port I highly recommend asking for a prescription for a low dosage of a blood thinner tablet like Xarelto as a precaution. It's a lot cheaper (and less painful) than having to get Lovenox later on and avoiding a blood clot prevents a lot of needless fear and anxiety.
Admitted to ER November 2, 2016 after collapsing following several weeks of digestive issues and several days of vomiting bile
Diagnosed November 3, 2016 with colon cancer
Surgery November 16, 5 cm resection. Stage III diagnosed following biopsy (tumour + 1 lymph node cancerous)
Folfox every other week (12 cycles) January to June 2016.
CT scans show no cancer in colon. Suspicious spots in lungs detected in 2nd CT scan in January.
Have not grown an now not thought to be cancerous.

plastikos
Posts: 273
Joined: Wed Jan 14, 2015 6:09 am

Re: Any Stage IV long term survivors here?

Postby plastikos » Tue Oct 17, 2017 11:03 am

Just thought I’d bump this thread up. Maybe some of us need to hear stories from time to time. I know I do.

As for me, I am approaching my 3 year mark from diagnosis in late 2014. I have had some wonderful periods of being NED and hopefully will enter another one soon. Hopefully for good. A lot has changed after having 2 recurrences. I am more pragmatic now. Not pessimistic, but just realizing and accepting that I am in this for the long haul. I used to think, maybe rather naively, that if I just finished the chemo I would be cured forever. I know it happens to a lucky few but in reality most aren’t so lucky. But my sheer will to survive has not changed. I’ll do anything. And I think that’s the only way to approach this enemy if one wants to survive.
Diagnosed St. IV Colon CA @ 37, male, Kras wild type, 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 12/2016 -> pseudoprogression (?), biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab
Sept 2017 - SIRT

stu
Posts: 602
Joined: Sat Aug 17, 2013 5:46 pm

Re: Any Stage IV long term survivors here?

Postby stu » Tue Oct 17, 2017 11:24 am

Well I am delighted to report it's now eight years and a nice clear scan too!!! Yippee .
The pursuit of the cure settled for us too and more a management and wellness focus took its place . It had been easier to handle this way. But good scanning is a life saver .
Wishing good treatment outcomes for you all .
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

stevieb
Posts: 387
Joined: Sat Feb 09, 2013 12:26 am

Re: Any Stage IV long term survivors here?

Postby stevieb » Tue Oct 17, 2017 11:56 am

Still here and doing great. NED again and have a scan at MDA coming up in early November. It will be 5 years since diagnosis in December!!!
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

mariane
Posts: 574
Joined: Sun Sep 13, 2015 6:16 pm

Re: Any Stage IV long term survivors here?

Postby mariane » Tue Oct 17, 2017 8:47 pm

Last Sunday in NY I met a 13 years colon cancer survivor. The patient went through 82 chemo treatments, had recurrences but has been NED for 10 years and counting :):):)

MY CEA normalized 2 years ago in October 2015 and I am NED since May 2016. It has not been long but I am happy I am still here.
mom of 8 years old twins, dx @ 40 with upper rectal cancer, 10+ liver mets in 6/2015, 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!

Mercy110
Posts: 71
Joined: Wed Aug 16, 2017 12:13 am

Re: Any Stage IV long term survivors here?

Postby Mercy110 » Wed Oct 18, 2017 5:00 am

My mum is currently undergoing Folfox with Avastin. She has multiple lung nodules according to the CT scan. Her response to the chemo is quite good as her CEA lowered. I just want to know if there are any cases for patie.ra with multiple lung nodules and still a la to undergo surgery and NED.
If so, what is the surgery you have taken? Thanks a lot.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery done. Temporary stoma. Path: T4N1M0. Stage3C
2017-06: Chemo - Xeloda. Rejected radio. CEA: 7.3
2017-08: CEA: 8.0 (1st) CEA: 9.8 (2nd) CT Scan: Multiple lung nodules. Stage4
2017-09: Chemo - FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0
CEA: 4.7 (10/10), 3.7 (10/11)

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE


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