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Lonsurf or Time to look for a Trial?

Posts: 2
Joined: Mar 2019



This is the first time I have been on this forum. My husband was diagnosed with Stage IV Colon Cancer with Mets to the liver in December of 2015. He is amazing! He has never given up because he wants to be here for our family, and he continues to work full-time because he loves his job. He has had over seventy chemo treatments at this point and we are at a crossroad in his treatment plant. While the colon cancer has only stayed in his liver, it is no longer responding to Folfiri with Panitumumab. He also has used Folfox with Avastin. That was his first line of treatment, and he did so well with it that MD Anderson agreed to operate on his liver back in October of 2016. However, when we went out for surgery, his liver tumors had already started to grow, so surgery was no longer an option. We went home and he went on the Folfiri cocktail which he has been on for the most part except for a three month break in 2017 when he did SBRT Radiation on his liver. We know his liver is not resectable, MD did exploratory surgery in early 2017 in hopes that they could remove the tumors, but his liver is too damaged, which is why we opted for SBRT over Y90. He had scans last Thursday, and it is clear that he needs a new treatment plan. At this point his doctor has offered Lonsurf or finding a trial. There are pros and cons on both and we are praying for wisdom to know what the right choice is. There is a clinical immunotherapy trial for MSS CRC with mets that he may qualify for. His oncologist is also looking for other trials that he could match with and will set up an appointment for him if there is anything. I guess my questions are does any expirience with Lonsurf? How do you know when it is time to choose a clinical trial over standard of care? Any input would be greatly appreciated. It is wonderful to see that there are many Stage IV CRC survivors on this forum.


Thank you!

Butt's picture
Posts: 355
Joined: May 2018

The problem with this darn desease that people stop responding....who is your doctor at MD Anderson?

JanJan63's picture
Posts: 2482
Joined: Sep 2014

Welcome, I'm sorry you're here. My understanding with Panitumumab is that the body doesn't get used to it or the cancer doesn't become immune to it because of it being an immunotherapy chemo. I've been on it several times and it's still the treatment that works best for me. But I haven't had it paired with Folfiri. Cancer is so weird. It's been very successful shrinking my tumours all except one which has never responded to it. What the heck. Makes no sense.

Did they test his tumour to see if the Panitumumab would work against it? They did that for mine before I started on it. I'm told it doesn't work for everyone.

I think in his situation I'd be up for trying something different and a trial would interest me. 


Posts: 2
Joined: Mar 2019

Thanks Jan,


Panitimumab is probably what kept him going on Folfiri for so long. Interesting that you just had Panitumumab. He has had several different oncologists comment on what a beautiful Panitumumab rash he has. Yes, he did Foundation One testing so he knows he is KRAS Wild Type, so they knew that a drug that targetd EGFR would work for him. I think right now we are thinking that if there is a trial that seems like it would be a good fit we will go that way. The benefit to that is that he still has Lonsurf if the trial fails. Cancer is just so different for everyone, even the same kind. 

Trubrit's picture
Posts: 5486
Joined: Jan 2013

Well, there you go. 

Good luck as you search for the right trial.  We all appreciate people who undergo trial treatments. 

Be sure to let us know how things are going. You know we will be here to support your husband and you throughout. 


Robjoe's picture
Posts: 6
Joined: Feb 2018

i thought I was reading my very own post reading yours...I’m joeys wife and we are running parallel courses.   We’re on the tail end of folfiri as well..surgery not an option.   I’m also looking for options.   We’ve been to Mayo which is location friendly, but I just have to believe there’s more.   I found an app “belong”, which, coupled with this I find very informative thus far.   Live oncologis, radiology , trial locators, and group support.    We are going strong and will hope the same for you as well....someone’s going to be a first here one day and kick the living crap out of this hateful s@#*&t.  

Posts: 1
Joined: Feb 2013

My husband was diagnosed with Stage IV colon cancer in February 2013. After numerous chemo first lines, he has been on Lonsurf since December 2017. His oncologist said that he has been on Lonsurf the longest of any of his patients. He is on a five week cycle. Five days on, two days off, then five days on, and three weeks off. He just had a PET scan and results showed everything is stable, so he will continure Lonsurf with blood work after five weeks. His doctor wants to see him in 10 weeks because right now he is on autopilot. He is tolerating Lonsurf but by no means is it a cake walk. The studies have shown that 88% of patients on Lonsurf will have their cancer spread or they will die. I guess he is lucky to be in the 12% of patients that have remained stable. We are taking one day at a time, and I have recently retired from a 37 year teaching career to spend more time at home. 

Prayers to those experiencing cancer!

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