Stage 4 to NED- Please tell us

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Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Stage 4 to NED- Please tell us

Postby Spazzyjanet » Tue Oct 09, 2018 5:15 pm

Yesterday, a PET scan results showed a spot on my liver that my surgeon confidently told us was a hemangioma lit up- along with some spots next to it.

They say they would need to do a biopsy to determine if it's cancer, but the tone is that they believe it is. This means Stage 4, which has struck me down hard and left my husband and I in varying degrees of despair and panic since.

It's never going to be okay to say goodbye to my kids, or to leave my husband alone to raise them- EVER. Anyone with Stage 4 have some good news to share? Did you ever get to NED?

I need to hear good news. I need hope.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

kiwiinoz
Posts: 1107
Joined: Thu Jan 03, 2013 11:44 pm

Re: Stage 4 to NED- Please tell us

Postby kiwiinoz » Tue Oct 09, 2018 5:43 pm

I have been on this board for over 5 years now and I have seen a lot of people come and go. I have seen a number who's situation looked dire go on to be NED from stage IV.
There is no telling what may, or may not happen. It is obviously extremely hard to face a stage IV diagnosis, and there is the natural reaction that you are undergoing now in the "why me, am I going to die" stage.
People said to me, that "we are all going go die" but I didn't buy into that. Yes, we are, but not so in your face as a Stage IV colorectal cancer diagnosis.
What I bought into was getting through my colon resection, and then having my lung resection (you need to see if you are a candidate for a liver resection) as this is your gold standard at having a chance for NED. If you can get that then move on to some form of Chemo and see what happens from there.
Whilst that is going on live each and every day like it is your last, as you never know, it may not be. What I mean is make your life as happy as you can with your husband and your kids, and then you have enjoyed it. If you make NED then you have had a better time.
Sorry if this seems flippant, as I certainly don't mean it that way
Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 27 Feb 2018
Port Out 26 March 2015

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CRguy
Posts: 9675
Joined: Sun Feb 10, 2008 6:00 pm

Re: Stage 4 to NED- Please tell us

Postby CRguy » Tue Oct 09, 2018 6:10 pm

Spazzyjanet wrote:Anyone with Stage 4 have some good news to share? Did you ever get to NED?
I need to hear good news. I need hope.

When you have a spare month or so :shock:
you are welcome to read my >9600 posts here since Feb 2008.
and please check out my signature

Stage IVa ? ... yup
NED ? ... AFAIK
still kickin' ass and takin' names 11 + years later

Cheers and best wishes
CRguy on the Journey
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

martd
Posts: 61
Joined: Tue Nov 21, 2017 3:48 pm

Re: Stage 4 to NED- Please tell us

Postby martd » Tue Oct 09, 2018 7:16 pm

A couple of hours ago today I left my appt going over my first PET MRI since finishing treatment and was told it was clear. I started with 17 liver Mets back in Nov of 2017. The same Doctor that broke that news to me then told me today with a smile I'm giving you the best possible news you can expect. So absolutely there is very much hope. Stay strong you can can get through this.

Dan
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7

hiker
Posts: 86
Joined: Thu Aug 09, 2018 10:15 am

Re: Stage 4 to NED- Please tell us

Postby hiker » Tue Oct 09, 2018 7:21 pm

See my replies yesterday to your "New diagnosis and scared" post. This is where you assemble the team that will get you to NED. Start going to different places and getting opinions until you are presented with the plan to rid your body of cancer. In my humble opinion, you can forget about local cancer centers - my experience showed they were less than worthless. A major cancer center that offers HAI pump treatment is your best option to not only get the cancer out, but to also limit the chance of recurrence.

Beating this awful disease can be done. There are plenty of folks on this board years out from a stage IV diagnosis. And I have to believe for every one person on here there must be dozens that aren't - they're living their lives.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

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Jack&KatiesMommy
Posts: 521
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Stage 4 to NED- Please tell us

Postby Jack&KatiesMommy » Wed Oct 10, 2018 9:50 am

I have been at this for over seven year. I was a BAD stage IV (my CEA was over 2,600 when diagnosed in 2011) and my liver was FULL of cancer in every lobe and there were suspicious nodules in my lungs. My children were 4 and 8...and I was the only working parent...who also supported my Mom. I got lots and lots of opinions...and saw many doctors. Dr. Kemeny at MSKCC saved my life with an HAI pump to my liver. I had lots and lots of chemo during the whole process and 11 RFA's to lung mets as well as a liver resection and resection of one lobe of my left lung. I have most recently been treated by another doctor (you have to find the right treatments and doctors for yourself...be your own advocate) and I am receiving Keytruda (immunotherapy off-label.) As of today, my CEA is 1.0 and I am NED. There is hope. There is hope!
Cynthia
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(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; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5 NOW 1.8
08/18 Clear CT scan

plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: Stage 4 to NED- Please tell us

Postby plastikos » Wed Oct 10, 2018 10:57 am

There are lots of survivor stories and there is always hope. I was diagnosed as St. IV almost 4 years ago and 2 surgeries, 30 chemos, 1 SIRT, 1 biliary stent placement, several immunotherapy sessions later I am NED. Wasn’t easy but most things that are worth it aren’t. Hang in there.
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

Ehut
Posts: 197
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Stage 4 to NED- Please tell us

Postby Ehut » Wed Oct 10, 2018 11:59 am

Another long term (6+ years) stage IV survivor here. It sounds like the disease in the liver is limited in your case, so hopefully resectable. If it's not resectable, I would try to find a center that offers HAI to hopefully get it to that state.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 6+ years and counting!

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Rob in PA
Posts: 1977
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Stage 4 to NED- Please tell us

Postby Rob in PA » Wed Oct 10, 2018 12:20 pm

Still here, still NED after rectum, colon, liver, and lung resections. It can be done, and, there are some survivor stories that you won't hear about because we tend to take a break from the ColonTalk and live life to the fullest. We chime in and offer support when we can.

Dig in your heels and keep fightin'. Hopefully you qualify for a liver resection.

best to you,
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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Russian27
Posts: 489
Joined: Sun May 17, 2009 9:47 am

Re: Stage 4 to NED- Please tell us

Postby Russian27 » Wed Oct 10, 2018 1:54 pm

Everything I went through is in my signature. Please ask if you have any questions.
Dx at 39(12/2008), Stage IV, omentum mets,
0/16 lymph nodes positive,
right colectomy 1/2009,
FOLFOX + avastin 2/2009-7/2009
Thank You Colonclub! 2015

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betsydoglover
Posts: 940
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Stage 4 to NED- Please tell us

Postby betsydoglover » Wed Oct 10, 2018 2:29 pm

See my signature also.

There is hope for Stage 4 folks.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

mpbser
Posts: 504
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage 4 to NED- Please tell us

Postby mpbser » Wed Oct 10, 2018 4:46 pm

My husband's story is in my signature. So far, so good!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

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LeonW
Posts: 348
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Stage 4 to NED- Please tell us

Postby LeonW » Wed Oct 10, 2018 5:38 pm

and here's a one! Just past the 5yr mark, despite bleak prognoses back in 2012.

Initial years were tough, but normal life has returned, mostly. Still visiting ColonClub occasionally, though less frequently then earlier in the battle. Anxieties have gone too. Fully aware how lucky I've been.

I hope you'll find the strength to take things by the day too and that you may celebrate each success and every milestone.

Best wishes, L
Dec 2012 CC (7 cm mass), 2 unresect liver mets, CEA 41.8 (MM @65yrs)
Jan 2013 colectomy @ spleen, 2/26 nodes IVa T3N1bM1a MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed PV embolization
Oct 2013 - R liver resect 28 hosp days (delirium, liver failure, emboli, encephalopathy) pCR - no cancer cells
2014/15 - recovery; scopy finds polyp
2016 - new town, new life
June 2018 - 5 yr mark, 2 polyps
clean CTs and (1.3-1.4) CEAs: 4x2014, 6x2015-17, 1x2018; next June 2019

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: Stage 4 to NED- Please tell us

Postby Spazzyjanet » Thu Oct 11, 2018 8:59 pm

martd wrote:A couple of hours ago today I left my appt going over my first PET MRI since finishing treatment and was told it was clear. I started with 17 liver Mets back in Nov of 2017. The same Doctor that broke that news to me then told me today with a smile I'm giving you the best possible news you can expect. So absolutely there is very much hope. Stay strong you can can get through this.

Dan


Thank you, Dan. I needed that.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: Stage 4 to NED- Please tell us

Postby Spazzyjanet » Thu Oct 11, 2018 9:02 pm

mpbser wrote:My husband's story is in my signature. So far, so good!


Stage 4 to NED in a year! Congratulations. I hope very much to be where you are a year from now.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.


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