Stage 4 to NED- Please tell us

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tater
Posts: 74
Joined: Wed Jul 19, 2017 5:53 pm

Re: Stage 4 to NED- Please tell us

Postby tater » Tue Oct 16, 2018 7:52 am

See my wife's signature we are coming up on our one year anniversary of NED in a couple of weeks, we just had another clean CT and MRI of liver.
Find a good surgeon that you can trust.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 LAR, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Stage 4 to NED- Please tell us

Postby teacher2017 » Tue Oct 16, 2018 8:03 pm

mpbser wrote:Spazzyjanet,

Good to hear that he is having an MRI. I have to advocate for my husband to get them instead of CTs as his CTs never picked up on his liver tumor. (I honestly don't know why the oncologist had ordered a CT in May when he originally said that surveillance was going to be with MRIs.) The gold standard is abdominal MRI for liver mets and Chest CTs to watch out for lung mets. That is what we are having done this fall.

With the best care you can possibly get and super strong advocacy, that 40% can get bumped to 80%. I'm definitely not the most well liked patients' spouse by his doctors, but I'm always making sure that my husband is getting the best treatment the medical system can provide (within our means).


I read that after a successful resection you go up to 50 percent and can be cured if it doesn’t return. Where did you get that 80 percent number?
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

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dianetavegia
Posts: 2707
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

Re: Stage 4 to NED- Please tell us

Postby dianetavegia » Sat Oct 20, 2018 8:11 am

I was Stage III from Jan. 2009 to Feb. 2012 when a liver met was found. It was 1.5 cm but smack dab middle of the back of the liver so the surgeon took 80% of the large side of the liver in April 2012 with no follow up chemo.

As of 5 a.m. this morning when my Chest CT and Abdominal / pelvic scans were released I remain CANCER FREE Stage IV for 6 1/2 years since the resection and total of 10 years in January.

TRUST, HOPE, FAITH, PRAY and never give up! I am so thankful for the 10 years God has given me. I'm 68 in December and other than my thyroid (controlled by meds), I'm in perfect health. Plump but healthy!
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

mpbser
Posts: 479
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage 4 to NED- Please tell us

Postby mpbser » Sat Oct 20, 2018 2:56 pm

teacher2017, I was only speculating. Apologies for being misleading.
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

String
Posts: 112
Joined: Tue Jun 10, 2008 3:03 pm
Location: Canada

Re: Stage 4 to NED- Please tell us

Postby String » Sun Oct 21, 2018 9:07 am

Eleven years this coming Tuesday.
Stage IV with liver mets and also kidney cancer to boot.
4 surgeries and 24 treatments my cea is now 2.3 and is holding steady for 5 years now since last treatment.
Still undergoing yearly check now.

There is always hope.
Stage IV colon with mets to liver October 07
Stage II kidney cancer November 2007
4 surgeries 2 liver, kidney and colon
NED

WarriorSpouse
Posts: 148
Joined: Tue Aug 16, 2016 9:02 pm

Re: Stage 4 to NED- Please tell us

Postby WarriorSpouse » Sun Oct 21, 2018 9:30 am

The two things as a supporting spouse I can offer are the following:

1. You are surrounded here primarily of surviving Stage IV patients and supporting spouses. Learn from them through reading their posts by using the search function under "quick links" above.

2. Now that you are Stage IV, you should seek advice from a major cancer center to get on an aggressive treatment plan. If you are in the U.S., your insurance will pay for the proposed treatment plan (minus your deductible). They will support the aggressive treatments to get you back at NED status. Do not linger or hesitate and go to a major center like Dana Farber/Boston, MSK/NYC, or MD Anderson/Houston. Get on a plan and get on the roadway to NED again. It is possible to get there but follow the plan and keep advocating for yourself by reading what others have learned here on this forum.

Best wishes going forward.
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

stu
Posts: 878
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 to NED- Please tell us

Postby stu » Sun Oct 21, 2018 9:44 am

Actually warrior spouse I totally ageee . I got informed from here and sought out those windows of opportunity where they presented themselves . Sought surgical opinions and thankfully mum was up for this .
I have seen people very reluctant to do this and the window slides by . So sad .
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 .

Spazzyjanet
Posts: 47
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: Stage 4 to NED- Please tell us

Postby Spazzyjanet » Sun Oct 21, 2018 3:28 pm

I've noticed that many of the successful Stage 4's used Avastin in their FOLFOX regime.

I am still waiting on the genome test on the tumor for that, BUT I ran my raw data file from 23 and me through a site called selfdecode.com and it says that I have an snp that is associated with shorter overall progression-free survival on this drug (Avastin) and now I am pretty scared.

Will the tumor genome test show the same thing as my raw data file? Or are these different altogether? If so, is that going to significantly decrease my chances?
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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dianetavegia
Posts: 2707
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

Re: Stage 4 to NED- Please tell us

Postby dianetavegia » Tue Oct 23, 2018 8:42 pm

I had no Chemo after my liver resection and today was offered 2 choices. One was a big hug and discharge or a big hug and one more CEA in Oct. 2019. I opted for the final CEA in a year. There are many studies that show cure is possible after surgery for certain size, location etc. mets. I’m living proof. Those recurrence free 6.48 years after a liver resection are considered cured with 99% certainty.
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

cartech78
Posts: 37
Joined: Thu Oct 25, 2018 6:22 pm

Re: Stage 4 to NED- Please tell us

Postby cartech78 » Thu Oct 25, 2018 6:50 pm

Hi all, I am new here as of today and this is my first post. I was just diagnosed with stage 4 CRC on 10/5. I am a 40 year old male. I went for a colonoscopy due to stomach issues and woke up from that procedure with my wife standing over me crying her eyes out and being told i had to go straight to hospital for an emergency surgery as my colon was 98% blocked. They did a bunch of CT scans on me and said i had 6 or 7 mets on my liver and sent me straight to colon Resection surgery. The surgeon removed a tumor the size of a baseball from my left side colon with clean margins. I have since been told my liver is not operable to remove the cancer from there. I am almost three weeks out now from that surgery and got my port installed today for Chemo which they want to start Monday the 29th. So far the only good news i have received is the Mayo clinic is having me come out to MN on 1/8/2019. I want to thank everyone who took their time to post their story on this post as it has given me the most hope i have had since diagnosis. I am having a hard time even looking at my sweet 8 yo daughter without breaking down into tears. This post has helped immensely. Thank you all.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.

Spazzyjanet
Posts: 47
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: Stage 4 to NED- Please tell us

Postby Spazzyjanet » Fri Oct 26, 2018 6:26 am

Welcome to the club. I hope that that the Mayo Clinic has a plan for you. Please check in with us to let us know how things go.

I got admitted to the hospital and had a resection due to Colon blockage (I actually went to an ER with what I thought was a stomach bug). I still didn't find out that Ihad 6 liver mets until 2 weeks after leaving the hospital and a full month after my colon resection. It was a blow, given that I was already scared about my chances before that.

Right now, I have a surgeon locally who thinks that I am a candidate for resection and/or ablation but I am doing chemo first and hoping that the story doesn't change once I do my first set of scans in a couple of months. I am also getting second opinions from both Onc and Surgery at a larger/ more reputable center durt the week of the 5th. Here's to modern medicine hopefully getting us both back to NED and staying there like these other folks.
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.

cartech78
Posts: 37
Joined: Thu Oct 25, 2018 6:22 pm

Re: Stage 4 to NED- Please tell us

Postby cartech78 » Fri Oct 26, 2018 8:56 am

Amen to that!!!
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.

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LPL
Posts: 411
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Stage 4 to NED- Please tell us

Postby LPL » Sat Oct 27, 2018 4:06 pm

Spazzyjanet wrote:I've noticed that many of the successful Stage 4's used Avastin in their FOLFOX regime.

I am still waiting on the genome test on the tumor for that, BUT I ran my raw data file from 23 and me through a site called selfdecode.com and it says that I have an snp that is associated with shorter overall progression-free survival on this drug (Avastin) and now I am pretty scared.

Will the tumor genome test show the same thing as my raw data file? Or are these different altogether? If so, is that going to significantly decrease my chances?

Hi Spazzyjanet, first let me say that I have not been here for a while (taken a paus to enjoy life..). My husband is NED, his Onc said ”you have a new body” last time we saw her. If everything is good next checkup (in January) they will remove the port. Of course I do not know for sure but my husband has changed things in his life. How much can a new regiment of 1.5hours walk each morning do? He also now eats a Lot of tree nuts. Studies have shown that both these things are positive. See my signature for his journey so far.
About the 23and me. When hubby was diagnosed I tried hard to check if he had SNPs that could make him react extra bad to the chemo. I found some but not the Very Bad. He reacted Very Bad to the steroids though (see signature). I believe that the most important gene info is what you get from testing the tumor! This is what will decide what kind of chemo to use to best beat this xxx.
All the best to you and thank you for posting your question! A Lot of NED people/caregivers have replied and it is so good to see :)
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Stage 4 to NED- Please tell us

Postby teacher2017 » Mon Oct 29, 2018 6:59 pm

cartech78 wrote:Hi all, I am new here as of today and this is my first post. I was just diagnosed with stage 4 CRC on 10/5. I am a 40 year old male. I went for a colonoscopy due to stomach issues and woke up from that procedure with my wife standing over me crying her eyes out and being told i had to go straight to hospital for an emergency surgery as my colon was 98% blocked. They did a bunch of CT scans on me and said i had 6 or 7 mets on my liver and sent me straight to colon Resection surgery. The surgeon removed a tumor the size of a baseball from my left side colon with clean margins. I have since been told my liver is not operable to remove the cancer from there. I am almost three weeks out now from that surgery and got my port installed today for Chemo which they want to start Monday the 29th. So far the only good news i have received is the Mayo clinic is having me come out to MN on 1/8/2019. I want to thank everyone who took their time to post their story on this post as it has given me the most hope i have had since diagnosis. I am having a hard time even looking at my sweet 8 yo daughter without breaking down into tears. This post has helped immensely. Thank you all.


Hi there! I know this is overwhelming and frightening. We all understand it well. Know that you can beat this. Focus on doing every chemo and staying healthy. Be as normal as possible. People handle this as a chronic illness not a terminal disease. The objective is to operable. Look into the Hai pump and ask a million questions. You can do this. Focus and get into the game. That 8 year old needs to see you fight. Stay in touch...
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

cartech78
Posts: 37
Joined: Thu Oct 25, 2018 6:22 pm

Re: Stage 4 to NED- Please tell us

Postby cartech78 » Mon Oct 29, 2018 7:25 pm

teacher2017 wrote:
cartech78 wrote:Hi all, I am new here as of today and this is my first post. I was just diagnosed with stage 4 CRC on 10/5. I am a 40 year old male. I went for a colonoscopy due to stomach issues and woke up from that procedure with my wife standing over me crying her eyes out and being told i had to go straight to hospital for an emergency surgery as my colon was 98% blocked. They did a bunch of CT scans on me and said i had 6 or 7 mets on my liver and sent me straight to colon Resection surgery. The surgeon removed a tumor the size of a baseball from my left side colon with clean margins. I have since been told my liver is not operable to remove the cancer from there. I am almost three weeks out now from that surgery and got my port installed today for Chemo which they want to start Monday the 29th. So far the only good news i have received is the Mayo clinic is having me come out to MN on 1/8/2019. I want to thank everyone who took their time to post their story on this post as it has given me the most hope i have had since diagnosis. I am having a hard time even looking at my sweet 8 yo daughter without breaking down into tears. This post has helped immensely. Thank you all.


Hi there! I know this is overwhelming and frightening. We all understand it well. Know that you can beat this. Focus on doing every chemo and staying healthy. Be as normal as possible. People handle this as a chronic illness not a terminal disease. The objective is to operable. Look into the Hai pump and ask a million questions. You can do this. Focus and get into the game. That 8 year old needs to see you fight. Stay in touch...

Thank you very much, had my onc call MSKCc today for referral
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.


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