2 years since diagnosis

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Siti
Posts: 230
Joined: Thu Aug 01, 2019 10:58 am

2 years since diagnosis

Postby Siti » Mon Jul 05, 2021 12:16 pm

Hey everyone,

I haven’t updated in awhile and thought today is the perfect time to do so because exactly 2 years ago today, my husband was diagnosed with stage 4 colon cancer and was given 2 years to live.

Today, my husband is in remission. We have been extremely lucky that he was declared NED since December 2019. I know he isn’t out of the woods, and probably never will according to his oncologists but we remain hopeful. Who knows, maybe a cure will be within reach and we’ll have a chance to grow old together as husband and wife.

My husband is on maintenance Avastin + chemo (TS-1) which is similar to Capecitabine but HFS is a lot milder. He still suffers from mild neuropathy and occasional diarrhoea but try to manage all the side effects with combination of acupuncture, creams and loperamide with psyllium husks. Overall, his quality of life is good. He works full time, exercises several times a week and we try our best to eat well but we do indulge every now and then :)

I hope his story can be of inspiration to others because we were desperately looking for survival stories when he was newly diagnosed and many of you gave us hope and invaluable advice, which we are eternally grateful for.

On a separate note, we adopted a puppy (she turns 1 year old in 2 days). I am thankful for all the good moments we have and pray that he continues to be in remission forever.

Thank you all for being there for us :)

Best wishes,
Siti
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

User avatar
beach sunrise
Posts: 517
Joined: Thu Mar 05, 2020 7:14 pm

Re: 2 years since diagnosis

Postby beach sunrise » Mon Jul 05, 2021 12:55 pm

Hi Siti, This update makes me so happy for you all!!!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
O Stoma Mia
Posts: 1655
Joined: Sat Jun 22, 2013 6:29 am

Some Stage4 / mCRC survival stories

Postby O Stoma Mia » Mon Jul 05, 2021 1:04 pm

Siti wrote:... I hope his story can be of inspiration to others because we were desperately looking for survival stories when he was newly diagnosed and many of you gave us hope and invaluable advice, which we are eternally grateful for.
...
Best wishes,
Siti

Here are some other Stage4/mCRC survival stories:

https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=322
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=1025
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=5264
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=9247
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=16211
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=40153
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=70220
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=72911
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=75137
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=83142
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=84023
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=89358
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=91402
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=111170
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=111824
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=112088
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=113078
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=113430
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=121314
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=121389
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=127314
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=138728
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=139038
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=140592
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=163260
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=168811
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=169775
https://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=170491

Siti
Posts: 230
Joined: Thu Aug 01, 2019 10:58 am

Re: 2 years since diagnosis

Postby Siti » Mon Jul 05, 2021 1:10 pm

Brilliant! Thanks for sharing, O Stoma Mia.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

worriedson714
Posts: 37
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: 2 years since diagnosis

Postby worriedson714 » Mon Jul 05, 2021 7:05 pm

I am very happy for you and more your husband be NED for a long time and thank you for posting this as it really helps to give me some hope . My dad has been fighting for two years and after two surgeries limited chemo and some radiation his cancer is growing again . It has lead to many complications infections and obstruction and now his oncologist is saying he will be on chemo for life . I been struggling to accept this reality so it's good to hear the doctors aren't always right and miracles do happen so thank you so much .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
watching and waiting
9/21- Surgery to remove prostate and bladder- Permanent Urostomy still cancer left
Watching and waiting
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg

Siti
Posts: 230
Joined: Thu Aug 01, 2019 10:58 am

Re: 2 years since diagnosis

Postby Siti » Tue Jul 06, 2021 7:56 am

worriedson714 wrote:I am very happy for you and more your husband be NED for a long time and thank you for posting this as it really helps to give me some hope . My dad has been fighting for two years and after two surgeries limited chemo and some radiation his cancer is growing again . It has lead to many complications infections and obstruction and now his oncologist is saying he will be on chemo for life . I been struggling to accept this reality so it's good to hear the doctors aren't always right and miracles do happen so thank you so much .


I am so sorry to read about your dad. In the beginning of my husband’s journey, we went to several hospitals across several countries until we found the right care. This forum has given us a lot of hope.. there are many survivors here that have truly beaten the odds and are still alive and well today. Please never give up!
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

Siti
Posts: 230
Joined: Thu Aug 01, 2019 10:58 am

Re: 2 years since diagnosis

Postby Siti » Tue Jul 06, 2021 7:57 am

beach sunrise wrote:Hi Siti, This update makes me so happy for you all!!!


Thank you! I hope you’re well? :)
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

Bpaint
Posts: 21
Joined: Sun Oct 11, 2020 8:54 pm

Re: 2 years since diagnosis

Postby Bpaint » Tue Jul 06, 2021 9:23 am

Thank you for sharing this happy news.
My husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes (25+)
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
CEA 113
Liver, colon and lymph node resection 4/21
New lung mets, Vectibix monotherapy started 6/21

Internal1
Posts: 12
Joined: Fri Aug 07, 2020 10:58 am

Re: 2 years since diagnosis

Postby Internal1 » Wed Jul 07, 2021 9:25 pm

Thank you Siti for sharing this happy news with us. This gives us all hope to continue the fight.

Siti
Posts: 230
Joined: Thu Aug 01, 2019 10:58 am

Re: 2 years since diagnosis

Postby Siti » Thu Jul 08, 2021 3:49 am

Thanks Bpaint! :)



Internal1 wrote:Thank you Siti for sharing this happy news with us. This gives us all hope to continue the fight.


Internal1 — I’ve sent ya a PM :)
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

Gravelyguy
Posts: 366
Joined: Thu Jul 05, 2018 6:03 pm

Re: 2 years since diagnosis

Postby Gravelyguy » Thu Jul 08, 2021 9:49 pm

That is awesome news! Thanks for the update!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!

DanNH
Posts: 4
Joined: Mon Mar 29, 2021 5:25 pm

Re: 2 years since diagnosis

Postby DanNH » Fri Jul 09, 2021 9:20 am

Thanks for the update! It gives me a lot of hope. My wife is Stage 4 CRC. She is responding well to Chemo and the other treatments we are doing for synergy.

Dan
Caregiver to 61yoa wife, Stage 4 adenocarcinoma
Diagnosed Feb 2021. Mets Liver and Lungs CEA:1298
Needle Biopsy diffusely and strongly positive for CK20 and CDX2, and focally positive for CK7.
Chemo Folfox March 2021.
Vitamin C IV 50g and 45 min hyperbaric 02 weekly
Supplementation and modified Keto - low carb diet
Reaction to Oxaliplatin on 5th treatment.
Chemo FolFiri May 2021, 6th treatment
May 2021 Scan showed reduction to tumors, some lung tumors disappeared.
5/7/21 CEA: 439.7
8/7/21 CEA: 81.5

DarknessEmbraced
Posts: 3631
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 2 years since diagnosis

Postby DarknessEmbraced » Sat Jul 10, 2021 12:22 pm

Wonderful that your husband is in remission and is doing well! :)
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: 1518
Joined: Sat Aug 17, 2013 5:46 pm

Re: 2 years since diagnosis

Postby stu » Sat Jul 10, 2021 1:29 pm

Great news , so good to hear !
Many more good days going forward for you both !
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 .

rachelfromnyc
Posts: 60
Joined: Fri Oct 04, 2019 11:32 am

Re: 2 years since diagnosis

Postby rachelfromnyc » Sat Aug 07, 2021 2:56 pm

Hi Siti,

Your husband and I were diagnosed around the same time so it's nice to see an update from you and that it's a good one! Thanks for sharing :)

Rachel
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin


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