About 4 years ago...

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Claudine
Posts: 694
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

About 4 years ago...

Postby Claudine » Thu May 19, 2022 10:25 am

... When DH had just gotten diagnosed with stage 4 mCRC, our daughter graduated from high school. I remember at the time that my dearest hope was that he'd see her graduate from college. Well, it wasn't smooth riding during those 4 years, but he did get to see that! Our trip to SoCal was lovely, albeit a bit stressful; but none of what I dreaded came to pass - the pouch didn't leak, he was able to join us for many restaurant meals without any problems or consequences, and we visited Joshua Tree National park in 100 degree weather without hydration issues.
For all of you starting this journey, know that the "15% 5-year survival" is but a statistics, and that you can make long-term plans :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met 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
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

MadMed
Posts: 146
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: About 4 years ago...

Postby MadMed » Thu May 19, 2022 10:44 am

I’m so happy for you Claudine, thank you for sharing hope and good news.
Wishing you manny, manny happy events in The future.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

Nor Cal
Posts: 57
Joined: Sun Dec 06, 2020 8:18 pm

Re: About 4 years ago...

Postby Nor Cal » Thu May 19, 2022 11:30 am

Happy for you, and thanks for posting.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120. TMB 5%
July 2020 - Present: 32 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

Rikimaroo
Posts: 408
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: About 4 years ago...

Postby Rikimaroo » Thu May 19, 2022 1:45 pm

Hi Claudine,

Your husband and I beat the odds. 5 years survivor here but still fighting, always thinking will this be my last year. It's tough, but I live for the present not the future. I am going on a 3 night cruise tomorrow and we have a 2 week jersey trip planned. I am going to enjoy my life as much as I can even though I have some pain. I am also going to start doing FolFiri again but skip Avastin for now. I need to shrink any activity and Folfiri has worked for me, albeit hard to tolerate.

Keep enjoying your husband and life. I have not been intimate with my wife for almost 7 months now and it really sucks, she is a beautiful loving wife and I hate that I can't because of all my issues. Things can get better though. She rather have me around then me dead, vs intimacy/sex.

All the best
Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

jsbsf
Posts: 104
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: About 4 years ago...

Postby jsbsf » Thu May 19, 2022 8:16 pm

I hope he’s recovering well after his recent surgery. It is very challenging emotionally for us. I remember those statistics when we got the news, and refused to not do everything possible to make it through this. It’s been a long three years for us. But he’s still here, feeling good. All the hospital staff are very optimistic.

DH has been on a similar journey to yours. He’s scheduled for an APR on the 31st. I’m looking forward to making a lot more memories.

Here’s to a lot of quality years for all of us!
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets

User avatar
Peregrine
Posts: 99
Joined: Tue Mar 01, 2022 1:18 am

Re: About 4 years ago...

Postby Peregrine » Fri May 20, 2022 12:55 am

Claudine -

I'm so happy for you and your DH! Four years is a long, long time to be overwhelmed with cancer and the various treatment planning details. It's almost like you have learned enough new things about CRC in the past 4 years to merit some sort of advanced degree in colorectal cancer !!

Good luck on your upcoming summer trip back to France, and be sure that DH has his Ostomy Travel Card and doctor's letter with him at all times, both for passing through Airport Security and for showing to cabin staff in the airplane.

Take care ...

aquarian_asian
Posts: 28
Joined: Wed Jul 07, 2021 7:07 am

Re: About 4 years ago...

Postby aquarian_asian » Fri May 20, 2022 3:30 am

You & your DH crossed some tough years so far and wish you both to enjoy the life together with lot fun & positivity
Cheers
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

Claudine
Posts: 694
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: About 4 years ago...

Postby Claudine » Fri May 20, 2022 10:09 am

Thanks all! Yes, living with cancer isn't easy, but it is still living, and thank goodness there are enough wonderful moments to balance the more challenging ones. Riki, I concur with your wife; so far sexual intimacy hasn't been an issue for us but should it become difficult for DH to "perform", I wouldn't mind at all - having his company is so much more important!
Peregrine, DH did print an ostomy card, although he didn't need it on our recent trip (he just told the security agents that he was wearing a medical pouch and that was it); but it may be more important for international flights. We'll see if he gets to go... He's getting tattooed this morning in preparation for radiation, which should start shortly.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met 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
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

DarknessEmbraced
Posts: 3690
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: About 4 years ago...

Postby DarknessEmbraced » Sat May 21, 2022 8:09 am

That's wonderful! :) I'm happy for you both! I'm glad you had a wonderful trip!
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! :)

stu
Posts: 1567
Joined: Sat Aug 17, 2013 5:46 pm

Re: About 4 years ago...

Postby stu » Thu May 26, 2022 11:49 am

Just fantastic. So glad I popped on .
Living a good life one day at a time .
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 .


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