I really can't believe it and not sure that it is actually true (I have a small 2x1 cm nodule in my right upper lung that is there, was never ablated, and which has not grown or shrunk since it appeared in July 2015)...but for the third CT Scan in a row....my MSKCC doctors have told me that they see no evidence of cancer.
It will be 5 years this August since I was diagnosed with CRC and told that my liver was so full of cancer that WITH treatment (chemotherapy...forget about even thinking about surgerical intervention) I had 12-22 months to live. I have been through a lot....numerous surgeries, HAI pump, liver resection, electroporation to a liver tumor, 8 rfa's, lots of chemo (Irinotecan, Oxylaplatan, 5fu).....(I have been on a low dose of Xeloda only since February 2014)....and all along I never dared to hope that one day I would be NED.
I don't post a lot...and I really didn't want to post this as it goes against my fear of tempting fate by even thiking that it could be....but I am posting because when I was diagnosed (and throughout my journey) I looked for posts from people who were like me but that eventually got to NED but after multiple battles.....and there really weren't a lot of those kinds of stories out there to give me hope. So, I hope that those our there struggling....going through chemo...hanging on to get to the next step...taking baby steps ....will take stock from this post and know that it can happen.....multi-disciplinary treatment can work even if it takes time and a lot of persistence.
Please also know that I pray for all of us (each and everyone on this forum) ever single night.
Cynthia
Almost afraid to say it but NED for 5 months now?
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Jack&KatiesMommy
- Posts: 640
- Joined: Wed Dec 21, 2011 1:08 pm
- Location: Columbus, OH
Almost afraid to say it but NED for 5 months now?
Last edited by Jack&KatiesMommy on Thu May 19, 2016 10:28 am, edited 1 time in total.
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,
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,
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DarknessEmbraced
- Posts: 3817
- Joined: Sat Nov 01, 2014 4:54 pm
- Facebook Username: Riann Fletcher
- Location: New Brunswick, Canada
Re: Almost afraid to say it but NED for 5 months now?
Congratulations! 
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured!
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured!
Re: Almost afraid to say it but NED for 5 months now?
So so happy for you! May it continue forever!
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018
Re: Almost afraid to say it but NED for 5 months now?
Congratulations! I am so happy for you!
I will never forget the encouragement you gave me when I started my own battle. The encouragement I so desperately needed. Thank you Cynthia!
I also pray every night and day for all the people from the forum.
I will never forget the encouragement you gave me when I started my own battle. The encouragement I so desperately needed. Thank you Cynthia!
I also pray every night and day for all the people from the forum.
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!
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!
Re: Almost afraid to say it but NED for 5 months now?
This is such wonderful news! May you stay NED forever.
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17
Re: Almost afraid to say it but NED for 5 months now?
Congratulations! I know what you mean about tempting fate, but it's important to celebrate the good news and give hope to others.
Resection of splenic flexure 7/24/13
T3N2BM0, Stage 3c,12/29 nodes
Folfox x12 9/13-3/14
CT scan 4/14, enlarged spleen, otherwise clear
CT 4/15, spleen WNL.
6/17 3 cm benign polyp at ileocecal valve, awaiting removal
T3N2BM0, Stage 3c,12/29 nodes
Folfox x12 9/13-3/14
CT scan 4/14, enlarged spleen, otherwise clear
CT 4/15, spleen WNL.
6/17 3 cm benign polyp at ileocecal valve, awaiting removal
Re: Almost afraid to say it but NED for 5 months now?
Cynthia, I am so very, very happy to hear this news!!!
You're right. You've been through a lot - chemo and its painful side-effects, multiple surgeries and procedures, appointments, good news/bad news, new scars, anxiety-provoking appointments, etc. But those five years since diagnosis (when you were told there was no hope) are also five years of memories. Five years with your family. Five years that matter. Those are the years you fought for and you have every reason in the world to be proud of yourself. You have been assertive, inquisitive, impatient, persistent, and willing to do whatever it took to get answers and for that you deserve a big pat on the back. You go, girl! Wishing you many more clear CT scans. You are always in my prayers too!
Julie
You're right. You've been through a lot - chemo and its painful side-effects, multiple surgeries and procedures, appointments, good news/bad news, new scars, anxiety-provoking appointments, etc. But those five years since diagnosis (when you were told there was no hope) are also five years of memories. Five years with your family. Five years that matter. Those are the years you fought for and you have every reason in the world to be proud of yourself. You have been assertive, inquisitive, impatient, persistent, and willing to do whatever it took to get answers and for that you deserve a big pat on the back. You go, girl! Wishing you many more clear CT scans. You are always in my prayers too!
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1
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Bev G
- Posts: 5856
- Joined: Thu Jan 07, 2010 11:19 pm
- Facebook Username: Bev Golde
- Location: Quechee, VT
Re: Almost afraid to say it but NED for 5 months now?
Such happy news, Cynthia. Thank you for sharing this awesome news, hope and encouragement.
Love,
Bev
Love,
Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo
9/13 ^17th clean PET/CT NED for now
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo
9/13 ^17th clean PET/CT NED for now
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Stanfordmom
- Posts: 612
- Joined: Wed May 14, 2014 1:32 am
Re: Almost afraid to say it but NED for 5 months now?
Thank you for posting your good news. I am so happy for you and inspired by you!
Sha
Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!
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HopeForJesse
- Posts: 249
- Joined: Wed Feb 24, 2016 9:39 am
- Location: Philadelphia
Re: Almost afraid to say it but NED for 5 months now?
Big congrats and thanks. Your post could not have been timed better for us. Very scared for surgery next week and your story gives hope. Thanks you and cheers to NED!!!!!
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!
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behconsult
- Posts: 264
- Joined: Fri Jul 04, 2014 4:53 pm
Re: Almost afraid to say it but NED for 5 months now?
Wonderful news after such a chaotic and stressful medical journey. I am so glad you can actually see and breath peace and health. May more good things be sent your way.
Bob
P.S. May you should sent a note/email to that doc who gave you an expiration date of 22 months.... he is human and guidance will help him with other patients?
Bob
P.S. May you should sent a note/email to that doc who gave you an expiration date of 22 months.... he is human and guidance will help him with other patients?
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT
Re: Almost afraid to say it but NED for 5 months now?
Very happy for you!
deb m
deb m
Re: Almost afraid to say it but NED for 5 months now?
that is great!!! congratulations and no reason to think it will not last! look at all you have been through so far. i have been doing this now for ten years and yes i have had recurrances but mskcc is right on top of it like they will be right on top of yours!
missjv
missjv
Re: Almost afraid to say it but NED for 5 months now?
Wonderful news. So good to hear. Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far
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