Cured of MCRC after 12 years

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Sophy
Posts: 259
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Cured of MCRC after 12 years

Postby Sophy » Sat Mar 18, 2023 4:15 am

I haven’t posted here much recently but today I am happy to happy dance share that my 12 year journey with metastatic bowel cancer has finally ended – and with a happy ending .

After multiple surgeries, radiation, over 100 chemo cycles my oncologist (who is head of Oncology in my city) said last week that with my ongoing clean scans and good bloodwork she is confident that I am completely cured.

Her oncology department told me in 2013 that with my multiple bilateral multiple lung mets I wouldn’t survive 3 years with the available treatment they would recommend. It is due to the knowledge, research, information and encouragement of past and current members - especially Maia, rp1954, Skypup, Jackandkatiesmommy, Grouseman, Stevieb and CB75 Carmen – that I pursued a different treatment plan and have not only survived 10 years already but am also now cancer free.

So I am feeling great but also feeling nervous leaving cancer behind and heading into the future back in general population - without any evidence of disease and also without the support of my oncologist. In our conversation last week she said “I hope that we will never speak again and I mean that in a good way’.

Looking at my signature here I have been very lucky to spend so much time with my children as they grew up – they are now 23, 19 and nearly 15. I am still dealing with radiation damage, broken ribs from thoracotomy that don't heal, finances after self financing trips to Europe for non financed surgeries, hormones from going through the menopause in a couple days radiation, chemo brain. However - it really is better than the alternative.

Thank you to the Old Timers for your support over the years and if any new folk want to explore lung laser surgery or cimetidine or celecoxib then I will be happy to help with what is now my outdated experience

Sophy
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

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: Cured of MCRC after 12 years

Postby IM64 » Sat Mar 18, 2023 6:28 am

That is really perfect news! The way was long but you did it. I sincerely congratulate you with that!!!
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

prayingforccr
Posts: 518
Joined: Sun Jun 28, 2020 4:44 pm

Re: Cured of MCRC after 12 years

Postby prayingforccr » Sat Mar 18, 2023 11:34 am

Congratulations,sophy!!

What treatments/protocols did you pursue?
11/19: colonoscopy
12/19: 6 cm stage 3 rectal cancer
1-3/20: 20 sessions of radiation/capecetibine/clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy
4/23 Lesions 40% smaller linearly/80% smaller by volume

zephyr
Posts: 339
Joined: Thu Aug 18, 2016 7:31 am

Re: Cured of MCRC after 12 years

Postby zephyr » Sun Mar 19, 2023 10:25 am

Sophy, I'm so happy for you! Congratulations!

While you're busy thanking the old-timers for their support, allow me to thank you for the support and guidance you so generously gave to me when I was headed to Germany years ago. I'm paying it forward.
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, inop lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
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

saltygirl
Posts: 106
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Cured of MCRC after 12 years

Postby saltygirl » Sun Mar 19, 2023 3:31 pm

So happy and excited for you. Most oncologists would not even offer any other treatment for stage 4 braf with distant lymph nodes. I am here NED. Just got back from Mexico last night.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Cured of MCRC after 12 years

Postby mariane » Mon Mar 20, 2023 10:26 am

Congratulations, Sophie!
I am so happy for you!
Many happy years ahead!
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!

stu
Posts: 1607
Joined: Sat Aug 17, 2013 5:46 pm

Re: Cured of MCRC after 12 years

Postby stu » Tue Mar 21, 2023 3:30 am

Great news , enjoy every moment ,
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 .

Suelee20
Posts: 11
Joined: Sat Dec 31, 2022 1:44 pm

Re: Cured of MCRC after 12 years

Postby Suelee20 » Tue Mar 21, 2023 12:07 pm

Wow!! Congratulations! Enjoy this new journey, you so deserve it.
Wife of DH (52); DX 9/27/18; CEA 22.9
10/31/18 LAR; Rectosig;6.2x4.5x1.1cm; Inv adenocarc; LowGr; pT4bN2b;tumor inv through muscularis propria into pericolorectal soft tissue;tumor inv peritoneal memb, ext to the serosal surf,inv the pelv sidewall;LN - 8/27;neg margins;WT-KRAS,NRAS,BRAF; MSS
Surg2/21(liv)
Ablat3/19(liv)
AdjChemoRT+Cap8/19(pelv)
Cykniferad1/20(liv)
SBRT12/21(lungs)
Stent6/22(rect)
CAPOX+Bev(4x);Folfiri+Bev(5x);Cap+Cetux(5x);Capiri+Cetux(14x);Oxali+Cetux(7x)
1/23Capiri+cetux totrytoslowprog

Nor Cal
Posts: 81
Joined: Sun Dec 06, 2020 8:18 pm

Re: Cured of MCRC after 12 years

Postby Nor Cal » Tue Mar 21, 2023 10:11 pm

Woah, that's awesome!
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 43 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

DarknessEmbraced
Posts: 3764
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Cured of MCRC after 12 years

Postby DarknessEmbraced » Sat Mar 25, 2023 10:44 am

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

aquarian_asian
Posts: 40
Joined: Wed Jul 07, 2021 7:07 am

Re: Cured of MCRC after 12 years

Postby aquarian_asian » Sun Mar 26, 2023 9:05 am

wonderful news, best wishes
Feb 2021 - Dx Stage3B - rectal cancer (Age is 48, Male)
April 2021 - Radiation - for a week (5 mins x 5 days)
May 2021 - LAR surgery
Pathology: G2, LN+ PVI+, Lymph Nodes 5 out of 22
Temporary Ileostomy
Jun-Aug 2021 - Chemo 4 cycles 3 months (CAPOX)
Feb 2022 - Ileostomy reversal

I_will_fight
Posts: 114
Joined: Mon Jun 29, 2020 3:38 pm

Re: Cured of MCRC after 12 years

Postby I_will_fight » Thu Mar 30, 2023 3:13 am

Congratulations and thank you for sharing.
This gives everyone hope.
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

rp1954
Posts: 1691
Joined: Mon Jun 13, 2011 1:13 am

Re: Cured of MCRC after 12 years

Postby rp1954 » Fri Mar 31, 2023 9:56 am

Congratulations on the hard won victory.
Thanks for throwing light on the elusive Rolles laser surgery and your journey.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

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Thedruid
Posts: 18
Joined: Tue Aug 21, 2018 1:49 pm
Facebook Username: theDruid

Re: Cured of MCRC after 12 years

Postby Thedruid » Fri Mar 31, 2023 11:33 am

I couldn't be happier with the news you shared, Sophy. CONGRATULATIONS ! I know you had a loooong fight to be free of this disease, but you kept fighting !

TheDruid
_____________________________________
Diagnosed 07/16/18, age 43
Colon Resection 03/08/18,
Stage 3B, T3N2aMO
Lymph-vascular invasion confirmed
6/16 lymph nodes
Port installed in 08/25/18
FOLFOX 08/18 - 2/2019
Liver met in 01/20. Stage 4. RadioAblation in 02/20
4 PALN + 01 nodule in the left lung found in 09/2021
Lymphadenectomy removed 04 PALN in 11/2021
Folfox (again) 11/21 - 05/22
Removed single lung met in 11/22
2 new "suspicious" nodules of 4mm in both lungs.. no growth until 04/23

User avatar
CRguy
Posts: 10435
Joined: Sun Feb 10, 2008 6:00 pm

Re: Cured of MCRC after 12 years

Postby CRguy » Fri Mar 31, 2023 2:56 pm

That is a well deserved WIN Sophy !!
Many congrats to you and thank you for paying it forward

On The Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
16 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


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