Stage 4, still NED

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mariane2
Posts: 4
Joined: Mon Oct 21, 2024 11:19 am
Facebook Username: gosia dusza

Stage 4, still NED

Postby mariane2 » Tue Oct 22, 2024 10:30 pm

Hi, it's Mariane. I was inactive or a while, busy with life. I also forgot my password and was not able to log in.
I am still NED, feeling well. It has been over 8 years since my last surgery now and over 9 since my diagnosis. My elevated liver numbers came back to normal on Essentiale Forte and Milk Thistle. Essentiale has been used in Europe to treat cirrhosis for a long time. I had elevated liver numbers for quite a few years after over a year of HAI pump. I hope this information can be used or some people. I stopped ursodiol years ago and I am only on Essentiale with all numbers within normal range after years.
Most o the time I don't think about cancer and live a completely normal life with all its ups and downs. I pray, still take supplements, walk, dig in the garden and travel, listen to Wade Hayes " Go live your life" song. He is a fellow colon cancer and recurrence survivor.
My twins are 15 and 10th graders now. They are good students and I am proud of them.
The FOLIRINOX chemo and HAI were well worth it as they gave me complete pathological response.
I am glad that there is wider range of meds, now.
I wish you all the best of luck!
Love,
Mariane
stage 4 rectal cancer diagnosed in 2015,
NED since 2016,
old time member Mariane

User avatar
John72
Posts: 351
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: Stage 4, still NED

Postby John72 » Thu Oct 24, 2024 7:17 pm

Very encouraging. I’m happy for you and your family. Thank you for sharing.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

utahgal7
Posts: 243
Joined: Fri Sep 11, 2020 12:04 pm

Re: Stage 4, still NED

Postby utahgal7 » Fri Oct 25, 2024 7:04 am

Glad that you are still here with us, Mariane ♥
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2; 1.4; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles
4/24 left brain craniotomy (RC met)

mariane2
Posts: 4
Joined: Mon Oct 21, 2024 11:19 am
Facebook Username: gosia dusza

Re: Stage 4, still NED

Postby mariane2 » Fri Oct 25, 2024 9:28 am

Thank you so much!
I will try to write more often. I owe my life in a way to cptmac whose post I accidentally found in June 2015 while googling stage 4 colon cancer survivors.

I have a dear friend who got recently diagnosed with stage 4 rectal cancer with bone mets and I would like to help her.
stage 4 rectal cancer diagnosed in 2015,
NED since 2016,
old time member Mariane

saltygirl
Posts: 173
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Stage 4, still NED

Postby saltygirl » Fri Oct 25, 2024 10:18 am

Congratulations. How important is a full pathological response? I had the same after 6 folfoxiri. Had a surgery on my 9.5 cm colon tumor that involved my ovary and possibly few lymph nodes outside of my colon. Qualifiesd as stage 4. No cancer cells found from the complete pathology. Than I had 5 more folfoxiri.
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

mariane2
Posts: 4
Joined: Mon Oct 21, 2024 11:19 am
Facebook Username: gosia dusza

Re: Stage 4, still NED

Postby mariane2 » Fri Oct 25, 2024 1:06 pm

https://pmc.ncbi.nlm.nih.gov/articles/PMC8858422/

Hi Salty girl,

Congratulations on your complete pathological response! It gives you according to some studies over 85% of chance of 10 years survival. You have one of articles about it above. Pathological complete response (pCR), implies the absence of all residual invasive cancer cells. Simply, all cancer cells got killed by chemo.
Happy NEDville!
stage 4 rectal cancer diagnosed in 2015,
NED since 2016,
old time member Mariane

saltygirl
Posts: 173
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Stage 4, still NED

Postby saltygirl » Sat Oct 26, 2024 9:04 am

Congratulations. I am really happy for you. I remember reading your story. About you relocating from Poland. I am also from Europe. Glad my kids are in college. One in medical school.
Thank you for the info. The problem is that my Mets were not in my liver. I had an ovary involved and possibly few lymph nodes outside of the colon. On top of that I have the worst mutation kras and braf. But so far doing well.
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

mwkoehler
Posts: 3
Joined: Tue Sep 10, 2024 9:32 pm
Facebook Username: Michael William Koehler

Re: Stage 4, still NED

Postby mwkoehler » Sun Oct 27, 2024 4:56 pm

Congratulations on your continuing NED


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