NED maybe. Stage 4, after 10 years Free. FOLFIRi?

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Cured
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Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

NED maybe. Stage 4, after 10 years Free. FOLFIRi?

Postby Cured » Fri Feb 01, 2019 11:56 pm

My wife says we don’t do normal. It is rare for Rectal or colon cancer to reappear after 10 years of being cured. Especially since colonoscopies have all been clear. But in late July we found a tumor -metastasized from Rectal cancer- pushing against my brain. Plus tumors in my right lung. 4 days after detection, surgically removed tumor from brain. Went home 2 days later. No pain or ill effects; amazing!

The markers don’t let me be treated with new Immunotherapy. Treatment is old FOLFIRi. I went 8 weeks before the diarrhea hit. Then I had to wear diapers and be careful. But if that is all I have to tolerate to be cured, then I am blessed.

After 8 rounds I told the Onc I am taking a break. It has been 2.5 weeks and I feel great. I needed that.
The CTscans showed tumor in my lung had shrunken dramatically and some foggy stuff from the scans are gone.
CEA down to 3.0, on a scale which wants you >3.0. I believe our prayers are answered. My lungs have full capacity.
Still, the Onc prescribed 4 more rounds of FOLFIRi two weeks ago when I insisted on the hiatus. I planned for the Chiefs to win and I would go to the Super Bowl. That didn’t happen, so I scheduled Chemo to restart this past Tuesday. I cancelled it so I wasn’t doing during my Mothers funeral- which was yesterday. (She was 92 and passed peacefully in her sleep.). Things worked out so my blood counts would be up so I was able to visit Mom in her final days and I was able to come in contact with all of the visitors.

This Tuesday I see the Onc again, as they plan to infuse me. Unless he relents due to the good CEA. He had seen the good lung scans, but still wanted more Chemo! (The fact that cancer centers and MDs. make lots of $ can't be a factor...)
Perhaps he will order a PET Scan now instead of later to see if the remaining spot on my lung is active or dead.
I do worry about radiation, as I have had so many CT scans and a PET in 5 months.

I know that many of you have had FOLFIRi; how many rounds have you done?
Are you on it for life?
Has anyone resulted in NED after being metastatic and doing FOLFIRi?
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: NED maybe. Stage 4, after 10 years Free. FOLFIRi?

Postby stu » Sat Feb 02, 2019 6:44 am

Just want to pop on and say how remarkable you are despite a horrible bump on the road . The details of the last few weeks have given you the space to handle your mum’s funeral and that’s so special . Precious days for sure .

I can’t answer your question regarding the chemo as my mum has come almost ten years into a stage 4 diagnosis with just twelve cycles of cap and oxy . Nothing else !! Lots of surgery and more importantly a great quality of life .

Your lung met seems to be going in the right direction . You know some people just seem to respond incredibly well despite a difficult diagnosis. It never ceases to amaze me .

Great to hear your latest update ,
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 .

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: NED maybe. Stage 4, after 10 years Free. FOLFIRi?

Postby mpbser » Sat Feb 02, 2019 8:22 am

I guess I have a similar question, not to hijack this thread, since I have heard of people doing worse on Folfiri than on FOLFOX.

How many of you have been NED since doing HAI and FOLFIRI?

I am just very hesitant for my husband to go from something we know worked for him (XELOX/FOLFOX) to something different. I have posted about this in other threads, e.g. 5FU ineffective for tp53 issue, inability to parse out whether it was the 5FU part of his treatment that worked compared with the Ox part, etc.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: NED maybe. Stage 4, after 10 years Free. FOLFIRi?

Postby Jack&KatiesMommy » Sat Feb 02, 2019 10:40 pm

Cured:
I don't know anyone with metastatic colon/rectal cancer who was cured with chemo alone. I think an rfa to the lung spot or a wedge resection after chemo would be your best shot at NED.
Cynthia
Last edited by Jack&KatiesMommy on Mon Feb 04, 2019 11:52 am, edited 1 time in total.
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

e_enyedy
Posts: 29
Joined: Sat Nov 25, 2017 5:28 pm

Re: NED maybe. Stage 4, after 10 years Free. FOLFIRi?

Postby e_enyedy » Sun Feb 03, 2019 12:32 pm

according to "universal" wisdom, the effectiveness of Foilfox and Folfiri are just about the same.
Unfortunately - even after long searches--I could not find any comparative studies.

all the best

E
77 yrs male (73 at Dx)
2/13 Dx Carcinoma, Sigmoid Colon
3/13 Sigmoid Colon Hemicolectomy,( 12"+)
3/13 Pathology Staging: T1N0M0; no follow-up chemo
5/15 Recurrence: in pre-sacral space -no other mets detected (Instantly became Stage IV)
5/15 Started 8 sessions of Folfox + Avastin
11/15 Finished chemo, PET/CT: NED
11/15 Started Xeloda+ Avastin every 3 weeks. Still Doing it.
Still NED -(Hope treatment keeps working)

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: NED maybe. Stage 4, after 10 years Free. FOLFIRi?

Postby LPL » Sun Feb 03, 2019 1:13 pm

e_enyedy wrote:according to "universal" wisdom, the effectiveness of Foilfox and Folfiri are just about the same.
Unfortunately - even after long searches--I could not find any comparative studies.

all the best

E

I found the following (have not read it though).
FOLFOX Versus FOLFIRI: A Comparison of Regimens in the Treatment of Colorectal Cancer Metastases
http://ar.iiarjournals.org/content/25/1B/563.long
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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

Re: NED maybe. Stage 4, after 10 years Free. FOLFIRi?

Postby NedPlease » Sun Feb 03, 2019 3:33 pm

Hate, hate, hate that you once again have to handle cancer. Your thought process regarding treatment sounds impressively calm and collected and I’m in awe.
I have no real treatment guidance (xeloda was used for my lung lesion and that was in 2011) but am curious of any recurrence symptoms since I assume scans had ceased.
Were there any?

Very best to you,
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

Cured
Posts: 581
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: NED maybe. Stage 4, after 10 years Free. FOLFIRi?

Postby Cured » Sun Feb 03, 2019 11:29 pm

N- I really was clear. Did a scan a year after my surgery. Then did colonoscopies and blood tests. When I was diagnosed with cancer again my wife was mad at me that I didn't get more scans. When she expressed such, my Onc said he wouldn't have ordered the scans since there were no signs they were needed.

I am in touch with my body. A year-&-a-half before this was found I could hear a slight whistle when I breathed. I was checked out at the ER including a chest X-Ray. They said I was fine and to follow up with the ENT Dr. (Went to ER since I was in a car wreck previously). In retrospect: the micro-tumor may have begun to grow. We can't go back in time. We have to deal with the hand we are dealt.

God is great in all!
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: NED maybe. Stage 4, after 10 years Free. FOLFIRi?

Postby Pyro » Tue Feb 05, 2019 8:02 pm

I’m on round 50 something of that cocktail, it’s kept the devil at bay for a while.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: NED maybe. Stage 4, after 10 years Free. FOLFIRi?

Postby radnyc » Wed Feb 06, 2019 7:40 am

mpbser wrote:I guess I have a similar question, not to hijack this thread, since I have heard of people doing worse on Folfiri than on FOLFOX.

How many of you have been NED since doing HAI and FOLFIRI?

I am just very hesitant for my husband to go from something we know worked for him (XELOX/FOLFOX) to something different. I have posted about this in other threads, e.g. 5FU ineffective for tp53 issue, inability to parse out whether it was the 5FU part of his treatment that worked compared with the Ox part, etc.


8.5 years NED, folfiri and HAI. Worked for me.
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015


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