Stage 4 support?

Please feel free to read, share your thoughts, your stories and connect with others!
Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Stage 4 support?

Postby Trying » Mon Jun 11, 2018 9:14 pm

Does anyone know of stage 4 forums? Ive heard from a few stage 4 on here and would love to hear from more who are doing well. :)
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Detox
Posts: 61
Joined: Fri Apr 28, 2017 5:27 pm

Re: Stage 4 support?

Postby Detox » Mon Jun 11, 2018 9:41 pm

Hi, I'm a stage 4 survivor having just celebrated my three year anniversary in February. I have been following your progress and been reading your posts. Did you recently have a petscan to examine your lungs? I know you have some metastases in your liver so I hope your treatment is starting or is going okay if you have already begun treatment.

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Stage 4 support?

Postby Trying » Mon Jun 11, 2018 11:12 pm

Hello! Thank you for responding. I had my Pet scan a dew days ago and don't hear back until my appt next Tuesday. Quite a tough wait dir myself and family. Had a couple little meltdowns from fear. Will update once i know. Im so happy to hear you are on your 3 yr anniversary :)
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

User avatar
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: Stage 4 support?

Postby Atoq » Tue Jun 12, 2018 1:56 am

I am also stage 4, one metastasis to the lungs that should be operated in two weeks. After the operation no more chemo is planned but only follows up. So far I am feeling very well and take one step at time. I live in Norway so protocols are a bit different there. My father had CRC when he was 64 and lived 10 years, did not die of cancer, he was incredibly strong during the whole treatment and I think this helps me to stay positive. I have two kids and got to give them a as normal life as possible. :D Keep us updated about your PET scan results.

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: Stage 4 support?

Postby tater » Tue Jun 12, 2018 8:35 am

My wife is a stage four. She is about seven months NED now. We have scheduled her take down surgery in two weeks. Other than that we are dealing with some lymphadema in her right leg. Hoping for good results on the PET.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

Foggyocean
Posts: 17
Joined: Wed Aug 30, 2017 12:31 pm

Re: Stage 4 support?

Postby Foggyocean » Tue Jun 12, 2018 9:38 am

My husband is Stage 4 (diagnosed 2 years ago). He had 4 mets to the liver that were successfully surgically resected. A year later he had a recurrence of 1 met to the liver which was radiated. He has been NED since radiation (4 months ago). There are many options for Stage 4 patients, just keep pushing!
45 year old caregiver to Husband
DX 3/16: 3cm Adenocarcinoma of sigmoid colon, Grade 2
4/16: colon resection; Stage IIIc (at diagnosis), 6/42 nodes, CEA: 11, MSS, KRAS
5/16: Baseline CT & MRI show 4 liver mets, CEA: 99
5/16-1/17: 4x FOLFOX, liver resect, 8x FOLFOX
8/17: 1 liver met, CEA 46.5
10/17: HAI pump; FUDR + Folfiri Oct-Mar '18 w/Dr. K @MSK
1/18: SBRT to liver met; CURRENTLY NED CEA < 1

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Stage 4 support?

Postby Trying » Tue Jun 12, 2018 10:40 am

Thank you all!
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: Stage 4 support?

Postby Achilles Torn » Tue Jun 12, 2018 10:54 am

I’m with you ! There are lots of stage 4 survivors doing great and it’s always nice to hear from them.

Stay positive !
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: Stage 4 support?

Postby kandj » Tue Jun 12, 2018 12:08 pm

My husband is stage 4, coming up on 3 years in August. He had the HAI pump a few months after diagnosis followed by a massive liver resection and ablation in May of 2016. Had a recurrence in July of 17 and Radiation on 4 mets in Dec '17. He is currently on a 2 month chemo break to wait and see what happens. Hoping nothing!
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

martd
Posts: 128
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Stage 4 support?

Postby martd » Tue Jun 12, 2018 1:13 pm

I am stage 4 with 17 liver mets. After a good response from folfox I'm able to have a 2 stage resection. The first went well April of this year. I scan on Sunday to determine if there was enough growth for the second surgery. In the beginning I was told I was unresectable but today its a different story. Just keep looking for answers, and always get another opinion if you feel the need. Hope all goes well for you :)
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

NedPlease
Posts: 550
Joined: Fri Mar 23, 2012 3:56 pm

Re: Stage 4 support?

Postby NedPlease » Tue Jun 12, 2018 1:57 pm

Stage four since 2010 and still here:) Signature provides details. And I just got results from a CT scan just today and still NED.

Keep fighting
N
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 6/18 Clear Scans
6/19- first time no scan
Today- NED

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Stage 4 support?

Postby Trying » Tue Jun 12, 2018 6:41 pm

Terrific news on the NED status!
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

User avatar
betsydoglover
Posts: 978
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Stage 4 support?

Postby betsydoglover » Tue Jun 12, 2018 7:16 pm

I know how you feel about wanting to hear good news - that's how I felt in 2005.

See my signature - 13 years+ since Stage 4 diagnosis. NED since April 2009. Know that things can work out.

Please take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 104 guests