After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Please feel free to read, share your thoughts, your stories and connect with others!
MattFromWest
Posts: 7
Joined: Mon Oct 12, 2020 5:08 pm

After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby MattFromWest » Mon Oct 12, 2020 5:53 pm

Hi everyone,

I am new to this forum and this is my first post. After a year of FOLFOX and good progress, I am switching to FOLFIRI. My colon was resected in Feb, and I had the HAI pump installed at the same time. My surgeon just told me that he can not operate now on my liver, and not sure if he ever will be able to. In addition to three larger mets, i have about 20 very small ones. FOLFOX definitely shruck things, the large mets went from 5cm x 5cm to maybe 1.5cm x 1.2cm or so. Many of the small tumors are still there, spread around the left side of my liver. I guess I am looking for some positive stories of people being told they might not get to surgery, but they were able to get there. Or, are there people out there that have had a very positive reaction with FOLFIRI after FOLFOX has ran its course (FOLFOX brought my CEA from 266 to 9, but it has since crept back up to 15)

THANK YOU so much and look forward to hearing from others.

Matt
Dx 9/2019 CC Stage IV
Annular sigmoid neoplasm in the distal sigmoid
3 met in liver ~5cm, 20+ small mets
Baseline CEA: 266
1 lymph node outside liver
9/2019: start FOLFOX
2/2020: resect colon; HAI pump implanted; lymph node removed
5/2020: 5 FUDR via HAI pump
7/2020: 3 liver met ~2cm x 1cm
7/2020: CEA 9;,remove oxyplatin due to allergic reaction
9/2020: CEA creeps up to 15
9/2020: 19 FOLFOX w/oxyplatin; 4 FOLOX w/o oxyplatin due to reaction
10/2020: Restarted 24th FOLFOX w/oxyplatin slow infusion

User avatar
Jack&KatiesMommy
Posts: 628
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby Jack&KatiesMommy » Mon Oct 12, 2020 7:41 pm

Matt
Where are you being treated? Can you get a second opinion at Memorial Sloan Kettering if you aren’t already seen there?

Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(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,

User avatar
ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby ginabeewell » Mon Oct 12, 2020 8:19 pm

When I started, nobody thought I would ever be operable. FOLFOX and Vectibix eventually got me there. Has anyone discussed Vectibix with you yet?

Agree a consult at MSK is very worthwhile. As is a consult with a reputable / alternate surgeon. They vary significantly in how aggressive they will be.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

MattFromWest
Posts: 7
Joined: Mon Oct 12, 2020 5:08 pm

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby MattFromWest » Mon Oct 12, 2020 8:38 pm

hI,

Thank you both for your responses. I am actually going to MSK, and i think very highly of my liver surgeon. (he implanted the HAI device) I have been told that the surgeons typically "under promise and over deliver". I really hope that is true! He said that the many small lesions are near the arteries, so there just isnt a clear path. To be clear, it isn't where the artery is attached to the liver, but more within the liver. My hope is that the FOLFIRI will further make progress so i can get to resection / ablation of the liver.

Matt
Dx 9/2019 CC Stage IV
Annular sigmoid neoplasm in the distal sigmoid
3 met in liver ~5cm, 20+ small mets
Baseline CEA: 266
1 lymph node outside liver
9/2019: start FOLFOX
2/2020: resect colon; HAI pump implanted; lymph node removed
5/2020: 5 FUDR via HAI pump
7/2020: 3 liver met ~2cm x 1cm
7/2020: CEA 9;,remove oxyplatin due to allergic reaction
9/2020: CEA creeps up to 15
9/2020: 19 FOLFOX w/oxyplatin; 4 FOLOX w/o oxyplatin due to reaction
10/2020: Restarted 24th FOLFOX w/oxyplatin slow infusion

rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby rachelfromnyc » Mon Oct 12, 2020 11:38 pm

I have and continue to have good results with Folfiri. Folfox was my first line but after three months on it and six infusions, two new tumors in the liver popped up. Because it was progression, I switched to Folfiri and Avastin. It took another six months for my liver to be clear but it remains clear today. And I started with the Folfiri a year ago. Everything else shrank and is stable and I'm finally able to have surgery to remove the primary. Good luck to Matt, hope you get good results with Folfiri too.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

msusta
Posts: 3
Joined: Mon Mar 02, 2020 11:13 am

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby msusta » Tue Oct 13, 2020 12:14 am

My mom had also around 20 tumors in liver. Largest ones are 4cm in size. After 6 rounds of Folfox and Vectibix she had an operation from liver even if all tumors could not be removed. The remaining ones (4-5) were destroyed by radiofrequency ablation. So you can have surgery to remove most of the tumors and the rest can be destroyed by ablation techniques.

Claudine
Posts: 438
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby Claudine » Tue Oct 13, 2020 10:03 am

My husband doesn't have liver tumors (yet?!) but while Xelox didn't work at all for him to control spread, Folfiri + Avastin worked really well. I hope it does for you as well!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

MattFromWest
Posts: 7
Joined: Mon Oct 12, 2020 5:08 pm

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby MattFromWest » Tue Oct 13, 2020 11:16 am

Gina, thank you so much for your response. No, no one has discussed Vectibix with me. I have never heard of it. Do you think it is something that would make sense for me to pursue? (I will google it right now)
Dx 9/2019 CC Stage IV
Annular sigmoid neoplasm in the distal sigmoid
3 met in liver ~5cm, 20+ small mets
Baseline CEA: 266
1 lymph node outside liver
9/2019: start FOLFOX
2/2020: resect colon; HAI pump implanted; lymph node removed
5/2020: 5 FUDR via HAI pump
7/2020: 3 liver met ~2cm x 1cm
7/2020: CEA 9;,remove oxyplatin due to allergic reaction
9/2020: CEA creeps up to 15
9/2020: 19 FOLFOX w/oxyplatin; 4 FOLOX w/o oxyplatin due to reaction
10/2020: Restarted 24th FOLFOX w/oxyplatin slow infusion

MattFromWest
Posts: 7
Joined: Mon Oct 12, 2020 5:08 pm

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby MattFromWest » Tue Oct 13, 2020 11:24 am

Rachel, thank you for your response. It gives me a lot of hope. I'm curious how many mets you had? For me, i dont think it is as much the size of the mets, although i have 3 large ones that have shrunk quite a bit - the issue is all the small ones and their location. The large ones were 5.3 x 4.6, 5.5 x 4.8 and 5.2 x 4.6. they are now 0.9 x 0.7, 1.5 x 1.4 and 3.2 x 2.5. Not really sure how many small ones there were, but there are about 20 now; my sense is there were maybe 30 to start. They are all smaller and he said some could actually not be alive anymore, but he wouldn't know until he went in.

Anyway, I am actually getting my infusion as we speak, but my Dr opted to go with a long infusion of FOLFOX as he thinks it could still be effective in containing the tumors (and doesnt see a path to surgery), and i think he wants to save FOLFIRI for later.

This is why i am looking for hope that maybe the FOLFIRI cold work. If i have to wait thru a few more FOLFOX treatments, that is fine.
Dx 9/2019 CC Stage IV
Annular sigmoid neoplasm in the distal sigmoid
3 met in liver ~5cm, 20+ small mets
Baseline CEA: 266
1 lymph node outside liver
9/2019: start FOLFOX
2/2020: resect colon; HAI pump implanted; lymph node removed
5/2020: 5 FUDR via HAI pump
7/2020: 3 liver met ~2cm x 1cm
7/2020: CEA 9;,remove oxyplatin due to allergic reaction
9/2020: CEA creeps up to 15
9/2020: 19 FOLFOX w/oxyplatin; 4 FOLOX w/o oxyplatin due to reaction
10/2020: Restarted 24th FOLFOX w/oxyplatin slow infusion

MattFromWest
Posts: 7
Joined: Mon Oct 12, 2020 5:08 pm

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby MattFromWest » Tue Oct 13, 2020 11:28 am

msusta and Claudine, thank you for your responses.

I think the location of my tumors are presenting the challenge. While they are not on the artery where it is connecting to the liver, i think it is where the artery is branching thru the liver. And, they are spread in many different sections.
Dx 9/2019 CC Stage IV
Annular sigmoid neoplasm in the distal sigmoid
3 met in liver ~5cm, 20+ small mets
Baseline CEA: 266
1 lymph node outside liver
9/2019: start FOLFOX
2/2020: resect colon; HAI pump implanted; lymph node removed
5/2020: 5 FUDR via HAI pump
7/2020: 3 liver met ~2cm x 1cm
7/2020: CEA 9;,remove oxyplatin due to allergic reaction
9/2020: CEA creeps up to 15
9/2020: 19 FOLFOX w/oxyplatin; 4 FOLOX w/o oxyplatin due to reaction
10/2020: Restarted 24th FOLFOX w/oxyplatin slow infusion

User avatar
ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby ginabeewell » Wed Oct 14, 2020 12:42 am

MattFromWest wrote:Gina, thank you so much for your response. No, no one has discussed Vectibix with me. I have never heard of it. Do you think it is something that would make sense for me to pursue? (I will google it right now)


Yes, I think worth asking the question. Seems like either Vectibix or Avastin could be added to make your treatment more aggressive. Depends on your tumor type which would work better for you.

If you do start Vectibix, come find me and I’ll give you advice on how best to prep for and tolerate it. It’s very effective but the side effects blow.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

MattFromWest
Posts: 7
Joined: Mon Oct 12, 2020 5:08 pm

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby MattFromWest » Wed Oct 14, 2020 4:34 pm

Hi Gina,

I asked about Vectibix and Avastin, and they said "we arent there yet, those are third line options with FOLFIRI". So, my oncologist told me yesterday that he still believes FOLFOX can "contain" the tumor. He thinks i might be able to go for another 3-4 treatments before switching to FOLFORI. So, I guess I have to trust his judgement.

I would like to hold out hope that FOLFIRI might be able to clear up my liver and those darn 20 small spots. My CEA was down to 9 from 266 (it has crept up to 15 since removing the oxyplatin, which they added back yesterday and gave me over a slow infusion that took 7 hours) so i keep thinking, "how much cancer can be left?" and the hope is that FOLFIRI can really make some headway.

Matt
Dx 9/2019 CC Stage IV
Annular sigmoid neoplasm in the distal sigmoid
3 met in liver ~5cm, 20+ small mets
Baseline CEA: 266
1 lymph node outside liver
9/2019: start FOLFOX
2/2020: resect colon; HAI pump implanted; lymph node removed
5/2020: 5 FUDR via HAI pump
7/2020: 3 liver met ~2cm x 1cm
7/2020: CEA 9;,remove oxyplatin due to allergic reaction
9/2020: CEA creeps up to 15
9/2020: 19 FOLFOX w/oxyplatin; 4 FOLOX w/o oxyplatin due to reaction
10/2020: Restarted 24th FOLFOX w/oxyplatin slow infusion

Lee
Posts: 6134
Joined: Sun Apr 16, 2006 4:09 pm

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby Lee » Wed Oct 14, 2020 4:48 pm

Good luck, I hope FOLFIRI does the trick,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby ginabeewell » Wed Oct 14, 2020 5:02 pm

My oncologist told me my best chance of getting to resectable is if they threw the kitchen sink at me. We discussed using all the tools at once vs using them over time. The former is more of a curative approach and the latter about getting more time, at the risk of oversimplifying.

I would keep pushing on this if you want to get to resectable. Maybe that’s based on my own experience with FOLFIRI with and without Vectibix, but I don’t think I’m the only one who used it as a first treatment.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

MattFromWest
Posts: 7
Joined: Mon Oct 12, 2020 5:08 pm

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Postby MattFromWest » Thu Oct 15, 2020 9:20 am

Thank you so much Gina.

I want to wish you the best, as it looks like you are looking to potentially do another liver resection.

Matt
Dx 9/2019 CC Stage IV
Annular sigmoid neoplasm in the distal sigmoid
3 met in liver ~5cm, 20+ small mets
Baseline CEA: 266
1 lymph node outside liver
9/2019: start FOLFOX
2/2020: resect colon; HAI pump implanted; lymph node removed
5/2020: 5 FUDR via HAI pump
7/2020: 3 liver met ~2cm x 1cm
7/2020: CEA 9;,remove oxyplatin due to allergic reaction
9/2020: CEA creeps up to 15
9/2020: 19 FOLFOX w/oxyplatin; 4 FOLOX w/o oxyplatin due to reaction
10/2020: Restarted 24th FOLFOX w/oxyplatin slow infusion


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



Who is online

Users browsing this forum: Bpaint, stu and 5 guests