7.5 years stage 4B; now NED for 21 months!

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

7.5 years stage 4B; now NED for 21 months!

Postby stevieb » Wed Jun 24, 2020 11:13 am

I am here to give hope to those of you battling! I am now 21 months NED since having a lung met cryoablated in Sept of 2018 and was 17 months NED before that from Stage IV colorectal cancer. I know I always looked for inspiring posts when I was newly diagnosed and I don’t come here often anymore. Stay strong and fight when you can! Much love and hope 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

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: 7.5 years stage 4B; now NED for 21 months!

Postby claudine » Wed Jun 24, 2020 1:05 pm

That's fantastic, Stevie! Thanks for dropping by and giving others hope. May I ask, did you have any mutations (KRAS/BRAF/NRAS)?
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

User avatar
Sophy
Posts: 261
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: 7.5 years stage 4B; now NED for 21 months!

Postby Sophy » Wed Jun 24, 2020 1:56 pm

Congratulations, that is great news for you and your family, very pleased to hear it :D
dx T3N1M0 Feb 2011 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 20 CT shows nodule, bronchoscopy confirms is scar tissue, still NED
Dec 20 stopping Xeloda continue celebrex, cimetedine
Aug 21,March 23 scans show still NED
March 2023 CURED - discharged from Oncology, no more scans or follow up

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

Re: 7.5 years stage 4B; now NED for 21 months!

Postby stevieb » Wed Jun 24, 2020 2:36 pm

My tumor had KRAS mutation G12D.

Hey Sophy!! I’m still in ADAPT also. Hopefully, for 3 more months and then I can get off if it!!
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: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: 7.5 years stage 4B; now NED for 21 months!

Postby stu » Wed Jun 24, 2020 4:45 pm

Oh that’s a nice name to see pop up and wonderful news . You endured a lot and have caught a break. Enjoy every minute .
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 .

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: 7.5 years stage 4B; now NED for 21 months!

Postby zephyr » Wed Jun 24, 2020 6:17 pm

stevieb wrote:My tumor had KRAS mutation G12D.

Hey Sophy!! I’m still in ADAPT also. Hopefully, for 3 more months and then I can get off if it!!


Thanks for posting and giving hope to another Stage IV with a KRAS mutation.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: 7.5 years stage 4B; now NED for 21 months!

Postby claudine » Thu Jun 25, 2020 8:25 am

zephyr wrote:
stevieb wrote:My tumor had KRAS mutation G12D.

Hey Sophy!! I’m still in ADAPT also. Hopefully, for 3 more months and then I can get off if it!!


Thanks for posting and giving hope to another Stage IV with a KRAS mutation.


Same here! :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: 7.5 years stage 4B; now NED for 21 months!

Postby Deb m » Thu Jun 25, 2020 11:53 am

Steve,

That's great news. You were DX'ed about the same time I started posting on this board. I was wondering how you were doing and am so glad that things are going great for you. My husband has been NED for a bit over 9 years now. Never thought we would ever get here.

Hoping that NED is the only thing you hear for the rest of your long life!

God bless,

Deb.

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 7.5 years stage 4B; now NED for 21 months!

Postby DarknessEmbraced » Sun Jun 28, 2020 10:57 am

Congratulations! That's wonderful! :)
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! :)

johnj
Posts: 4
Joined: Fri Jul 17, 2020 3:39 pm

Re: 7.5 years stage 4B; now NED for 21 months!

Postby johnj » Sat Jul 18, 2020 11:18 am

zephyr wrote:

stevieb wrote:
My tumor had KRAS mutation G12D.

Hey Sophy!! I’m still in ADAPT also. Hopefully, for 3 more months and then I can get off if it!!



Thanks for posting and giving hope to another Stage IV with a KRAS mutation.


Same here. Congratulations! -John
47yr. IIIB (T3N2aM0) 3/2018
MSS/pMMR
KRAS G12D
CEA:5.0
radiation/chemo 4/2018-5/2018
Surgery 7/2018
FOLFOX6 8/2018-11/2018
lung recurrence + VATS 4/2019
MSS/TMB low
pelvic bone + lung mets 7/2019
pelvic radiation 8/2019
FOLFIRI + Avastin - slight progression 8/2019-7/2020
CEA: 6.1 7/2020
Lonsurf + Avastin 7/27/2020

I_will_fight
Posts: 148
Joined: Mon Jun 29, 2020 3:38 pm

Re: 7.5 years stage 4B; now NED for 21 months!

Postby I_will_fight » Fri Mar 05, 2021 1:41 am

Deb m wrote:Steve,

That's great news. You were DX'ed about the same time I started posting on this board. I was wondering how you were doing and am so glad that things are going great for you. My husband has been NED for a bit over 9 years now. Never thought we would ever get here.

Hoping that NED is the only thing you hear for the rest of your long life!

God bless,

Deb.


Hi Deb,

I think you mentioned somewhere you husband was 2A with risk factors and took 6 months Xeloda, am I correct?
Can you tell us more?

Thank you

JC
46 yo male Spain
06/2020 - 6cm T3N0M0 CC splenic flex
3 and 4 mm lung ground glass
lymp 0/37
dMMR MSH6
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, optimistic surgeon.
11/20 - 4 x CAPOX completed.
12/20 - Clear colonoscopy
02/21 - MRI liver lesion unchanged.
11/21 - Clear CT
02/22- Colonoscopy: Sessil polyp 3mm
05/22- Clear CT
06/22- Negative Signatera
12/22- Negative Signatera
01/23- Clear CT
07/23- Clear CT, normal markers.
09/23 - Negative Signatera
01/24 - Clear CT

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: 7.5 years stage 4B; now NED for 21 months!

Postby Siti » Fri Mar 05, 2021 3:01 am

Wonderful news and thanks for sharing!!
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: 7.5 years stage 4B; now NED for 21 months!

Postby Sunnycd » Fri Mar 05, 2021 11:09 am

It warms my heart to read this! I hope you are enjoying your NED status and wish you the best!
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

DCook54
Posts: 31
Joined: Sat Sep 05, 2020 10:12 pm

Re: 7.5 years stage 4B; now NED for 21 months!

Postby DCook54 » Sun Mar 07, 2021 8:37 am

Thank you for sharing your good news! It sure does give me hope, and it helps me see that I just have to keep going whatever comes my way. Keeping you in my prayers!
54 yo f
Stage IV colon- mets to lungs
KRAS G12V
Dec 2019- partial colect adenocarcinoma
0/31 LN
Jan 2020-PET NED
Jan 2020- Staged at I
July 2020-Ct-nodules both lungs
July 2020-VATS both lungs pos crc mets Stage IV
Aug 2020 began 1/6 cycles Folfox
Nov 20 Comp 6 Folfox
Dec 20 Colonoscopy/CTs clean
Dec 20 NED
April 21 Stable scans. 4 mm lung nodule to watch
Aug 21 VATS 2 nodules cancer
Sept 21-present Xeloda Main.
Nov 22 clear scans = 15 months NED
Dec 22 pleural effusion neg for cancer

kiwiinoz
Posts: 1170
Joined: Thu Jan 03, 2013 11:44 pm

Re: 7.5 years stage 4B; now NED for 21 months!

Postby kiwiinoz » Sun Mar 07, 2021 6:12 pm

Good to see a post for you mate and congratulations!
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 - August 2020
Port Out 26 March 2015


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