Chance for long-term NED for stage IV with chemo alone?

Please feel free to read, share your thoughts, your stories and connect with others!
LMighty
Posts: 25
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Chance for long-term NED for stage IV with chemo alone?

Postby LMighty » Fri Mar 17, 2017 11:27 am

Hi everyone,

Have you any stories of stage IV survivors achieving long-term NED with chemo alone?

As mentioned in my signature, my mom is considered stage IV due to malignant pleural effusion despite the absence of any visible tumour. So resection is not an option -- we can only count on chemo, at least for the time being. I am aware of the low chance statistically but would really like to hear some positive stories to keep on fighting.

Thanks a lot.
Supporter to my mom (64 yr)

2012: DX Stage I, rectal cancer; resection and colostomy, no chemo
5/16: DX Stage III, mets found; right groin lymph node and soft tissue nodules
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid, NO visible tumour on scan
7-12/16: Xelox + Avastin X 6 rounds
1/17: Clean PET scan, NED
2/17: pleural effusion; cancer cells found in fluid AGAIN
3/17: Pleural tap + pleurodesis scheduled; chemo(Xeliri) planned for further progression

recruiter
Posts: 70
Joined: Thu Feb 11, 2016 12:01 pm
Facebook Username: Bill Wilson

Re: Chance for long-term NED for stage IV with chemo alone?

Postby recruiter » Fri Mar 17, 2017 12:17 pm

To quote my oncologist, "There is always hope."

Keep fighting.
DX Stage 4 2/16 with lung mets
4/16 CT, PET show "marked improvement" in size and number of lung mets, rectal tumor.
8/16 "Great report" from scans, lung mets continue to shrink in size and number, CEA 1.6, cancer "in remission" but surgeon believes tumor remains too large.
10/16 Xrays for constipation problems reveal tumor occupies 25 percent of rectal canal: Occupied 80 percent upon diagnosis 2/16
12/16 Back on Avastin; tumor can be removed, but need better margins.

Achilles Torn
Posts: 38
Joined: Fri Dec 16, 2016 2:41 pm

Re: Chance for long-term NED for stage IV with chemo alone?

Postby Achilles Torn » Fri Mar 17, 2017 12:55 pm

Chances may be low but it is quite possible.

See Bob Ramey's story (Chemo only) on the Colon Cancer podcast

http://thecoloncancerpodcast.com/2016lybl008/

There are a few a few others on this board that if you search you may find. Also - there are those that when they had surgery after Chemo their tumors were virtually gone or 'dead' from the Chemo.

Chances are low (I would guess less than 1 in 10) but it can happen....Also possible to fail a chemo line and have a great response to the next.

Stay positive!

AT
40 yo Male. DX By Surgeon Dec. 8 2016
Sigmoid Colectomy Dec. 9 2016
Pathology T3N2b?MX 19 of 24 Nodes Positive.
peri colonic tumor deposits 8cm from Tumor. Perineural invasion positive.
PET scan shows Para-Aortic and Iliac Lymph node spread.
Moderately differentiated. MSS. KRAS/BRAF Wild
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after 1st round

User avatar
LeonW
Posts: 228
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Chance for long-term NED for stage IV with chemo alone?

Postby LeonW » Fri Mar 17, 2017 7:35 pm

Achilles Torn wrote:. . . there are those that when they had surgery after Chemo their tumors were virtually gone or 'dead' from the Chemo.

Yes this sometimes happens. I'm one of these lucky ones, see my signature. IIRC, my docs said that they see this in some 6% of initially non-resectable cases of liver mets. I sometimes wonder if, in retrospect and in theory, my (difficult) liver resection could have been avoided, but have no regrets.

I hope this helps a little, L
Married Male
Dec 2012 - Dx CC @ age 65; 2 unresect liver mets, CEA 41.8
Jan 2013 - IVa T3N1bM1a colectomy @ spleen; 2/26 nodes
Feb-Aug 2013 - 1x Xelox-7x Xelox/Avastin, shrinkage from cycle 3
Sept 2013 - 2 failed Portal Vein embolizations
Oct 2013 - liver resect 28 hosp day (12day delirium, emboli, encephalopathy); pathology: CPR - cancer free
2014/15 - recovery; benign polyp Apr '15
Apr 2016 - reclaim life, move house/town :D
1.3/1.4 CEAs and clean CTs - 4x2014, 4x2015/16; next May 2017

plastikos
Posts: 234
Joined: Wed Jan 14, 2015 6:09 am

Re: Chance for long-term NED for stage IV with chemo alone?

Postby plastikos » Sat Mar 18, 2017 11:21 am

Hey LMighty. This is a question that crosses my mind a lot. I would say it is possible but only in a small percentage of cases. Praying for the best.
Diagnosed with St. IV Colon Ca, 37, male, Kras wild type, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
Liver MRI 2/2015 - Clean
PET-CT 7/2015 - Clean
Liver MRI & PET scan 10/2015 - 2 liver mets
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab 12/2016 -> pseudoprogression (?), biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab

LMighty
Posts: 25
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: Chance for long-term NED for stage IV with chemo alone?

Postby LMighty » Wed Mar 22, 2017 1:37 pm

Hi everyone,

Thanks a lot for your replies and kind words. Happy to know some of us do achieve what seemed to be extremely rare. I really need those stories. I need hope to cling to. This is so tough.

Right now my mom is on some sort of a break before we start Xeliri in early April. She stayed in the hospital for a few days for thoracentesis and pleurodesis to relieve symptoms. PET scans done 2 months ago showed no visible tumors but I have really been worried about the possible progression during these few months off chemo. She is back home today, sleeping really well, and alive and kicking. We try to be positive, eat and sleep well, to prepare for another battle ahead.

I hope all the best for you.
Supporter to my mom (64 yr)

2012: DX Stage I, rectal cancer; resection and colostomy, no chemo
5/16: DX Stage III, mets found; right groin lymph node and soft tissue nodules
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid, NO visible tumour on scan
7-12/16: Xelox + Avastin X 6 rounds
1/17: Clean PET scan, NED
2/17: pleural effusion; cancer cells found in fluid AGAIN
3/17: Pleural tap + pleurodesis scheduled; chemo(Xeliri) planned for further progression

User avatar
dianetavegia
Posts: 2558
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

Re: Chance for long-term NED for stage IV with chemo alone?

Postby dianetavegia » Wed Mar 22, 2017 2:07 pm

My sweet friend at church was dx's with rectal cancer and told with over 50 liver tumors, she wouldn't make it to summer. They haven't removed the rectal tumor and each chemo eventually has failed but she's on a new one right now and her CEA is coming down. With radioactive beads, they shrunk all but the two largest liver tumors. This is her 3rd summer and she's in church every Sunday, helps care for her 3 grandbabies and you'd never know she had anything wrong to look at her.

There's always hope! I sometimes say 'Cancer may kill me...... but NOT TODAY!'
Diane
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo
NED Sept. 29, 2016 Seven years 9 months since original dx.
“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2 http://www.justalittletalk.com


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



Who is online

Users browsing this forum: Bing [Bot], WriterGirl1969 and 51 guests