Almost 3 years ago

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Siti
Posts: 244
Joined: Thu Aug 01, 2019 10:58 am

Almost 3 years ago

Postby Siti » Fri May 20, 2022 4:44 am

Hey everyone,

In spring of 2019, a year after we got married, my husband was diagnosed with stage 4 colon cancer with extensive distant lymph nodes involvement and was given 2 years to live.

Today, my husband received his CT scan results after 40 rounds of chemo (mostly maintenance), and remains in remission. We have been extremely lucky that he was declared NED since December 2019.

He still suffers from mild neuropathy, diarrhoea at the end of each cycle and bad HFS but try to manage all the side effects with combination of acupuncture, creams and loperamide. Overall, his quality of life is good. He works full time, exercises several times a week and generally eats well. Of course we also 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.

I am thankful for all the good moments we have and will pray that he continues to be in remission forever. Who knows, maybe a cure will be within our reach so that we can put cancer behind us. I sincerely hope we’ll have a chance to grow old together as husband and wife.

If you have any questions, feel free to ask or send me a DM :) I’ll try my best to respond promptly.

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.

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

Re: Almost 3 years ago

Postby MadMed » Fri May 20, 2022 5:45 am

Thank you for sharing Siti, such great news. I’m happy you and DH got back some normalcy. It’s particularly important to see and hear stage 4 get to NED.
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

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

Re: Almost 3 years ago

Postby Claudine » Fri May 20, 2022 10:03 am

Posts like this one are the reason this forum is so nice - it provides a much needed relief from the dreadful statistics you find when you google about CRC. I hope your husband stays in remission!
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

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

Re: Almost 3 years ago

Postby aquarian_asian » Sat May 21, 2022 5:43 am

Thanks Siti and best wishes for you and your hubby

quick question is - does acupunture helping neuropathy to resolve? off late, i started getting foot pain as a result of chemo and i am using Ralvo plaster. It is ok at the moment and sometimes it is not.
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

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

Re: Almost 3 years ago

Postby DarknessEmbraced » Sat May 21, 2022 7:53 am

Such wonderful news! :) I'm glad he's 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! :)

Siti
Posts: 244
Joined: Thu Aug 01, 2019 10:58 am

Re: Almost 3 years ago

Postby Siti » Sat May 21, 2022 4:20 pm

aquarian_asian wrote:Thanks Siti and best wishes for you and your hubby

quick question is - does acupunture helping neuropathy to resolve? off late, i started getting foot pain as a result of chemo and i am using Ralvo plaster. It is ok at the moment and sometimes it is not.


Hello Aquarian_Asian,

I received your DM —

My husband was sceptical about acupuncture at first but became a convert after his first session. It doesn’t offer a cure unfortunately because he is still on chemo but according to him, it provides a big relief for both neuropathy and HFS up to a few days to a week. Then the symptoms return. He goes only once a month because the acupuncturist is located quite far away. I hope you’re able to find a reputable acupuncturist that can offer relief to your symptoms too.

For HFS, the head nurse of his cancer hospital recommended haemorrhoid cream — you may find info on my previous posts. It seems like it works very well and he also recommended to some other patients at the clinic and they all said it worked for them too.

I hope this helps.

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.

saltygirl
Posts: 73
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Almost 3 years ago

Postby saltygirl » Sun May 22, 2022 11:53 am

So happy for you and your husband!!! Please have the best summer. I will add to this. Never give up. Cancer is unique for everybody. I have braf and Kras mutations and stage 4 - distant lymph nodes. I am in full remission for 1,5 year. Going to Italy, Croatia, Spain etc with my kids next month.

saltygirl
Posts: 73
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Almost 3 years ago

Postby saltygirl » Sun May 22, 2022 11:55 am

I am not on any treatment since 18 months ago.

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

Re: Almost 3 years ago

Postby aquarian_asian » Mon May 23, 2022 4:42 am

Thanks Siti. It helps.
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

Siti
Posts: 244
Joined: Thu Aug 01, 2019 10:58 am

Re: Almost 3 years ago

Postby Siti » Mon May 23, 2022 5:25 am

saltygirl wrote:So happy for you and your husband!!! Please have the best summer. I will add to this. Never give up. Cancer is unique for everybody. I have braf and Kras mutations and stage 4 - distant lymph nodes. I am in full remission for 1,5 year. Going to Italy, Croatia, Spain etc with my kids next month.


That’s so wonderful! Very happy to hear the good news and do enjoy your summer to the fullest!

My husband and I will be travelling to a tropical island soon, we’re really looking forward since traveling was limited due to the pandemic.

May I ask if your lymph nodes were wide spread or focused in one area? His doctor isn’t opposed to him taking a chemo break but looking at the trends of the other distant lymph nodes members, maintenance chemo seems like the right thing to do especially for those who that did not go through radiation or lymphadenectomy.
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.

saltygirl
Posts: 73
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Almost 3 years ago

Postby saltygirl » Mon May 23, 2022 11:37 am

Enjoy your vacation!!! My lymph nodes were in one area near the primary tumor. I had folfoxiri 6 treatments and 1 week of high dose radiation to that area. Than I had surgery and all the cancer site was removed. But no cancer cells were found. After I continued with 5 more folfoxiri treatments. I just had plastic surgery done to fix my scars on my stomach. And as a bonus had my boobs done as well:-) Feel fabulous now.

saltygirl
Posts: 73
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Almost 3 years ago

Postby saltygirl » Mon May 23, 2022 11:38 am

Just like your husband. I exercise daily. And I am starting to work again.

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

Re: Almost 3 years ago

Postby stu » Thu May 26, 2022 11:48 am

Such a beautiful post . Just delighted 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 .

Siti
Posts: 244
Joined: Thu Aug 01, 2019 10:58 am

Re: Almost 3 years ago

Postby Siti » Sun Jun 05, 2022 8:18 pm

saltygirl wrote:I just had plastic surgery done to fix my scars on my stomach. And as a bonus had my boobs done as well:-) Feel fabulous now.


You’re amazing! Love it!
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.


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