Stage 4 support?

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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 yr old.
Colon cancer stage IV 10 liver mets April 2018
Folfox as of June 2018

Posts: 30
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.

Posts: 56
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 yr old.
Colon cancer stage IV 10 liver mets April 2018
Folfox as of June 2018

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Posts: 318
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.

45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Posts: 72
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 LAR, 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
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18

Posts: 15
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-Apr '18 w/Dr. K @MSK
1/18: SBRT to liver met; CURRENTLY NED CEA 0.8

Posts: 56
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 yr old.
Colon cancer stage IV 10 liver mets April 2018
Folfox as of June 2018

Achilles Torn
Posts: 108
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 !
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 Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

Posts: 212
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
Told unresectable liver Mets
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
46 rounds of chemo 8/15-5/18

Posts: 49
Joined: Tue Nov 21, 2017 3:48 pm

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
12 rounds folfox , avastin / oxi
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 complete clinical response, rectal tumor is gone
Rectal surgery postponed, wait and watch
10/18 clear scan CEA .7

Posts: 537
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
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
Today- NED

Posts: 56
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 yr old.
Colon cancer stage IV 10 liver mets April 2018
Folfox as of June 2018

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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,
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
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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