Any Chemo Lifers? Incurable Stage 4

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NIKMAKMOM
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Joined: Tue May 26, 2015 3:38 pm
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Any Chemo Lifers? Incurable Stage 4

Postby NIKMAKMOM » Thu Sep 14, 2017 11:38 pm

Hello all,
I apologize I haven't been active here, but I have been an active warrior fighting for almost three years, diagnosed Stage 4 with Mets to my liver, lung, mediastinum and lymph nodes. I had a colon resection for primary tumor and lymph nodes. I have had 70 rounds to date of recommended chemos, in addition to immunotherapy (Opdivo), radiation to lung met and next week radioembolization to growing liver Mets. See signature line.

I was wondering if anyone else is a chemo lifer and if so, how many rounds have you had? I'm curious as I am exhausted emotionally and physically of chemo treatments and want reassurance from other warriors who may have more experience with 70+ rounds. Looking for some inspiration... Fortunately my CEA is responding to the chemo, and I am stable, but there is no doubt there is gradual growth of my tumors. I know I will not be able to reach NED status, but maybe miracles do happen!

Love to all fellow warriors!
~Always Reaching for the SilverLining~ Elkie :D
Age 48 at Dx Wife/Mom to 2 Kids
Stage IV Colon T4a N2a M1b - Mets Liver, Lung, Mediastinum & Lymph Nodes
DX: 10/2014 - Colon Resection
TX: 11/2014 - Folfox/Avastin 7x (DC allergy tx #7)
Chemo 5FU/Avastin (38 rnds) 7/2016
3x Rads to lung met
Immunotx 6x Opdivo Failed CT 8/2016 Significant Progression
9/2016 Irinotecan+ Vectibix 8x Failed-Skin Issue Current: Ongoing Erbitux +Leucovorn/5FU push
http://www.caringbridge.org/visit/mystagelvcoloncancer

BIG ROB 69
Posts: 61
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Any Chemo Lifers? Incurable Stage 4

Postby BIG ROB 69 » Fri Sep 15, 2017 12:03 am

Hi. Read my sig. I believe we owe it to life to keep on fighting the good fight. Plus, I can't stand the thought of leaving my boy, even though he's gonna be 21, and looks like he's gonna be a good,strong man. Besides, it's easier to die than it is to live, and it's in the hard that makes it worth the fight.
3/18/2015 DX CC Stage3/4 49YO MALE IN NEW YORK
Inoperable...hepatic artery
11/15 oper to rem block...colon bypass
4/16 oper to remove scar tissue
5/16 Lynch pos.
10/16 Two bile tubes installed to relieve jaundice
So far I have done the three main chemo drug rounds and on 12/19/16 start Keytruda.
No chemo after 8/3/16 CEA: 10/14/16-409 12/19/16- 887 Mostly my CEA was in the 140-180 range.
CEA: 1/9/17-415 1/30/17-156.2 2/20/17-120.8 3/13/17-98 4/21/17-83.6 5/12/17-64.7 6/1/17-32.1
7/25/17-32.6

BIG ROB 69
Posts: 61
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Any Chemo Lifers? Incurable Stage 4

Postby BIG ROB 69 » Fri Sep 15, 2017 12:06 am

Hi. Read my sig. I believe we owe it to life to keep on fighting the good fight. Plus, I can't stand the thought of leaving my boy, even though he's gonna be 21, and looks like he's gonna be a good,strong man. Besides, it's easier to die than it is to live, and it's in the hard that makes it worth the fight.
3/18/2015 DX CC Stage3/4 49YO MALE IN NEW YORK
Inoperable...hepatic artery
11/15 oper to rem block...colon bypass
4/16 oper to remove scar tissue
5/16 Lynch pos.
10/16 Two bile tubes installed to relieve jaundice
So far I have done the three main chemo drug rounds and on 12/19/16 start Keytruda.
No chemo after 8/3/16 CEA: 10/14/16-409 12/19/16- 887 Mostly my CEA was in the 140-180 range.
CEA: 1/9/17-415 1/30/17-156.2 2/20/17-120.8 3/13/17-98 4/21/17-83.6 5/12/17-64.7 6/1/17-32.1
7/25/17-32.6

NIKMAKMOM
Posts: 13
Joined: Tue May 26, 2015 3:38 pm
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Re: Any Chemo Lifers? Incurable Stage 4

Postby NIKMAKMOM » Fri Sep 15, 2017 12:24 am

Thank you Big Rob for your response. Wow, my CEA is at 170 now, and ranges around 130 and up. By your signature line, does it mean you have not had chemo for over a year and your numbers keep dropping!?! If so, that is inspiring!! I'm so happy for you!
~Always Reaching for the SilverLining~ Elkie :D
Age 48 at Dx Wife/Mom to 2 Kids
Stage IV Colon T4a N2a M1b - Mets Liver, Lung, Mediastinum & Lymph Nodes
DX: 10/2014 - Colon Resection
TX: 11/2014 - Folfox/Avastin 7x (DC allergy tx #7)
Chemo 5FU/Avastin (38 rnds) 7/2016
3x Rads to lung met
Immunotx 6x Opdivo Failed CT 8/2016 Significant Progression
9/2016 Irinotecan+ Vectibix 8x Failed-Skin Issue Current: Ongoing Erbitux +Leucovorn/5FU push
http://www.caringbridge.org/visit/mystagelvcoloncancer

Mercy110
Posts: 65
Joined: Wed Aug 16, 2017 12:13 am

Re: Any Chemo Lifers? Incurable Stage 4

Postby Mercy110 » Fri Sep 15, 2017 4:34 am

Hello. My mum is a stage 4 patient with multiple lung mets. She has just started the first round chemo for Folfox and Avastin, which we hope the lung spots are going to disappear for the best outcome. Unfortunately she has drunk quite a lot of cold drinks after the chemo and led to severe diarrhea, now she seems to feel better.
It's encouraging to read posts from other stage 4 patients or their family members to remind myself I am not alone, but I am not sure if it is possible for one to NED if they are having multiple lung nodules which said to be inoperable. Just hope for the miracle and I will pray for you all!
Daughter of Mum age 56, NRAS-mutated
2017-05: Surgery done. Temporary stoma. Path: T4N1M0. Stage3C
2017-06: Chemo - Xeloda. Rejected radio. CEA: 7.3
2017-08: CEA: 8.0 (1st) CEA: 9.8 (2nd) CT Scan: Multiple lung nodules. Stage4
2017-09: Chemo - FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0
2017-10: CEA: Around 4.5 (10/10)

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

RichieTheK
Posts: 3
Joined: Mon May 29, 2017 11:27 am

Re: Any Chemo Lifers? Incurable Stage 4

Postby RichieTheK » Fri Sep 15, 2017 6:31 am

I, too, have been diagnosed with incurable cancer. I've been through about 30 rounds of chemo therapy so far and have been told by my doctor that I will continue to get chemotherapy of various kinds until nothing works anymore. Then It's the Big Sleep. With luck, I too will reach 70 rounds. All we can do is hang in there.
DX 5/13/2016 (Friday the 13th) mRCa Stage 4b
Met Liver, Lungs, Spine
5/15/2016 Tumor partially obstructive; colostomy performed
KRASmt
Another mutation that means I can tolerate a higher than normal dose of Irinotecan.
5/2016 FOLFIRI with higher dose of Irinotecan
8/2017 Signs of tumor growth, added Avastin to FOLFIRI

DebZ
Posts: 70
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Re: Any Chemo Lifers? Incurable Stage 4

Postby DebZ » Fri Sep 15, 2017 3:57 pm

Hi! I'm supposedly incurable with multiple, scattered lung mets. Folfiri was starting to fail so now I'm back to Folfox, which I had after original colon resection. To date I've had 40+ chemo treatments. You are amazing at 70+. It's as emotionally draining as it is physically, but every day I'm with my family is precious. I think it's about making the most of it when we can. That being said, I am still naive because I don't have any cancer pain, just chemo-induced nausea and fatigue after treatments. I run the roads like a crazy person when I'm feeling good!
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014: Folfox 12 treatments (lots of reductions in oxaliplatin and ceased before end)
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and complete hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switching to Folfox+Avastin

lovelife789
Posts: 21
Joined: Thu Aug 24, 2017 5:28 am

Re: Any Chemo Lifers? Incurable Stage 4

Postby lovelife789 » Fri Sep 15, 2017 8:08 pm

I personally have not gone through so many rounds of chemo. Bravo to you all who did!
BUT, I did talk to two very inspiring women when I was waiting at the clinic for my treatment.

They were both dx with late stage lung cancer and one managed to have gone through 5 years of non-stop chemo (I think it would put together close to 70 rounds?), and the other one 4 years. They are relatively older (late 50 or early 60) and seemed to be doing well.

Hope this helps a bit though these cases are not CC or RC patients...
F/38 - Dx 8 Mar 17, CEA 80.5
Stage 4 Sigmoid Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense nausea from Xeloda, it was dropped
9/22 - Folfox resumes, allergic to Oxi...

BIG ROB 69
Posts: 61
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Any Chemo Lifers? Incurable Stage 4

Postby BIG ROB 69 » Sat Sep 16, 2017 12:18 am

NIKMAKMOM, I have been on KEYTRUDA since 12/16. For the past three months I've had a bad throat infection/chapped lips that has postponed a couple of treatments, but it's better than waking up in the hospital :D
3/18/2015 DX CC Stage3/4 49YO MALE IN NEW YORK
Inoperable...hepatic artery
11/15 oper to rem block...colon bypass
4/16 oper to remove scar tissue
5/16 Lynch pos.
10/16 Two bile tubes installed to relieve jaundice
So far I have done the three main chemo drug rounds and on 12/19/16 start Keytruda.
No chemo after 8/3/16 CEA: 10/14/16-409 12/19/16- 887 Mostly my CEA was in the 140-180 range.
CEA: 1/9/17-415 1/30/17-156.2 2/20/17-120.8 3/13/17-98 4/21/17-83.6 5/12/17-64.7 6/1/17-32.1
7/25/17-32.6

boswind
Posts: 24
Joined: Fri Apr 11, 2014 12:04 pm

Re: Any Chemo Lifers? Incurable Stage 4

Postby boswind » Sat Sep 16, 2017 6:01 am

So far I have had 50+ rounds of chemo treatment.
01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery to remove 13cm sigmoid-colon and rectum.
02.25.2015 PET/CT/MRI scans show liver mets and L4 Spine involvement.
MSS, KRAS wild type, BRAF wild type
Mar 2015 - Aug 2015, folfox + Avastin
Aug 2015 - Jul 2017, 5FU + leucovorin + Avastin for Maintainance
Jul 2017 - Present, folfuri + Avastin
Current CEA: 5.6
Total over 50 rounds of chemo treatment received

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mypinkheaven
Posts: 415
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
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Re: Any Chemo Lifers? Incurable Stage 4

Postby mypinkheaven » Sat Sep 16, 2017 1:18 pm

DebZ wrote:Hi! I'm supposedly incurable with multiple, scattered lung mets. Folfiri was starting to fail so now I'm back to Folfox, which I had after original colon resection. To date I've had 40+ chemo treatments. You are amazing at 70+. It's as emotionally draining as it is physically, but every day I'm with my family is precious. I think it's about making the most of it when we can. That being said, I am still naive because I don't have any cancer pain, just chemo-induced nausea and fatigue after treatments. I run the roads like a crazy person when I'm feeling good!


I also have multiple, scattered lung mets. I'm now on 5FU+Erbitux (KRAS wild) and the mets are relatively stable. I don't want to be a chemo lifer. The majority of my mets are too small right now, but I'm still pushing for future options. I went to Loma Linda outside of LA to talk to the radiation oncologist about proton beam therapy. The doctor said that I was a candidate for the proton radiation treatment, but he wanted me to wait for some growth. I wonder if this is something you could look into.

Other treatments for lung mets include VATS surgery and RFA ablation. I don't know if your oncologist has discussed these options with you or if any would be appropriate. If he/she hasn't, I would start a conversation and push for referrals. You and I may always have to be on some chemo, but reducing the tumor burden may facilitate a lighter, easier chemo regiment. Maybe even an occasional chemo vacation!! 8)
MSS, KRAS Wild
9/2012 Colon Cancer IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Metastasis to uterus. Hysterectomy
2/16 Pelvic radiation - 25, brachytherapy - 3.
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules less than 5 mm.
8/16 CT Nodules still present. Most stable. Some growth
10/16 CT Same ^. Onc recommends no tx :evil:
11/16 Transfer to UCSD Moores Cancer Center
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus

NIKMAKMOM
Posts: 13
Joined: Tue May 26, 2015 3:38 pm
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Re: Any Chemo Lifers? Incurable Stage 4

Postby NIKMAKMOM » Mon Sep 18, 2017 12:18 pm

Hi all,
I'm heading to chemo 71 tomorrow, having my blood work today to check CEA as well as prep for my liver radioembolization I will have later this week. I agree being a chemo lifer sucks, I have looked into surgical options, and with Mets to multiple organs, unfortunately, I am not a candidate. We are doing radioembolization to reduce tumor load, as well as prevent possible future issues only. I have had radiation to my largest lung mass, just to reduce tumor load, not as a cure or step to NED. It is very sobering to know there is no cure, and I continue to fight because I can, mentally and physically. Our situations are all different and I advocate for each of us to look into as many options as possible t maintain, prolong life, and/or hopefully cure each of us. Hugs to all fellow warriors!
~Always Reaching for the SilverLining~ Elkie :D
Age 48 at Dx Wife/Mom to 2 Kids
Stage IV Colon T4a N2a M1b - Mets Liver, Lung, Mediastinum & Lymph Nodes
DX: 10/2014 - Colon Resection
TX: 11/2014 - Folfox/Avastin 7x (DC allergy tx #7)
Chemo 5FU/Avastin (38 rnds) 7/2016
3x Rads to lung met
Immunotx 6x Opdivo Failed CT 8/2016 Significant Progression
9/2016 Irinotecan+ Vectibix 8x Failed-Skin Issue Current: Ongoing Erbitux +Leucovorn/5FU push
http://www.caringbridge.org/visit/mystagelvcoloncancer

boswind
Posts: 24
Joined: Fri Apr 11, 2014 12:04 pm

Re: Any Chemo Lifers? Incurable Stage 4

Postby boswind » Tue Sep 19, 2017 4:29 pm

Have you considered any clinical trials?
01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery to remove 13cm sigmoid-colon and rectum.
02.25.2015 PET/CT/MRI scans show liver mets and L4 Spine involvement.
MSS, KRAS wild type, BRAF wild type
Mar 2015 - Aug 2015, folfox + Avastin
Aug 2015 - Jul 2017, 5FU + leucovorin + Avastin for Maintainance
Jul 2017 - Present, folfuri + Avastin
Current CEA: 5.6
Total over 50 rounds of chemo treatment received

plastikos
Posts: 269
Joined: Wed Jan 14, 2015 6:09 am

Re: Any Chemo Lifers? Incurable Stage 4

Postby plastikos » Thu Sep 21, 2017 4:27 am

Hi. Not technically a chemo lifer yet but I am stage 4. Currently on Pembrolizumab every 3 weeks but I am scheduled to undergo SIRT with Y90 spheres next week for some tumors in the liver that have responded partially to Pembro but aren't going away. Everything else outside the liver has gone. Doctors say we are basically nuking the whole of segment VIII with enough liver to spare. Lots of stage 4 survivors here as you know. I think everyone gets exhausted sometimes and that's ok. Hang in there. Lots of new and better treatments now. Best of luck to us all.
Diagnosed St. IV Colon CA @ 37, male, Kras wild type, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
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
Sept 2017 - SIRT

Steph20021
Posts: 492
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Any Chemo Lifers? Incurable Stage 4

Postby Steph20021 » Sat Sep 23, 2017 12:39 am

I'm stage 4 and a chemo lifer too. I've had about a combined total of 1.5 years of chemo, 6 months of folfox and now 1 year in folfiri. Diagnosed Jan 2014. No liver or lung mets.just lymph nodes and abdominal wall mets.

My current issue: I'm on 100mg of morphine a day and doctor wants me to try and reduce me meds so I dont escalate through all kinds of harder drugs too quickly as she thinks I'll be here a while.
I'm having increased pain though so rather than reduce I feel I may need to increase dosage.

We all get tired of chemo I think, but I found a few 3 wk breaks did me well mentally this summer, and making some fun plans.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri


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