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

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stevieb
Posts: 407
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: 386
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 (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

User avatar
Sophy
Posts: 251
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 11 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 2020 CT shows still NED
Continuing ADAPT

stevieb
Posts: 407
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: 1355
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: 290
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 found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
June-2020 Mild progression, continue Xeloda/Avastin

Claudine
Posts: 386
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 (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

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: 3466
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! :)


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