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

[MattFromWest]

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

[Jack&KatiesMommy]

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

Cynthia

[ginabeewell]

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.

[MattFromWest]

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

[rachelfromnyc]

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.

[msusta]

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]

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!

[MattFromWest]

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)

[MattFromWest]

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.

[MattFromWest]

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.

[ginabeewell]

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.

[MattFromWest]

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

[Lee]

Good luck, I hope FOLFIRI does the trick,

Lee

[ginabeewell]

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.

[MattFromWest]

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