Hepatic artery infusion chemotherapy (HAIC) pump for liver mets

I have an HAI pump and my experience has been much different than what the stories on the Intera website would have you believe.

I had a colon resection with my gallbladder removed and the HAI pump implanted at the same time. This surgery was through muscle all the way down my abdomen with another large incision on the side for the HAI device. It was very painful and hard to recover from and extremely scarring. The gallbladder removal has caused problems for me with digestion and the pain of having it wrenched out of my body and the hole left there was devastating. The area where it was removed seized up when I tried to breathe after surgery. I was so afraid I would die of shock a chaplain was brought in.

They have to check and see if it's working so it meant sticking a huge needle into my abdomen and putting me into a scanning machine when I could barely sit up. It was frightening and nightmarish.

When finally I had the pump chemo added, it had to be done at a facility with an expert. That oncologist also assumed he would be taking over my care and plans and began trying to put me on second line systemic chemo which I was not ready for. I didn't know I would also need systemic chemo. The pump chemo therapy is not by itself. I ended up getting treated at two different centers, one for the HAI chemo every 2 weeks and the other for Folfox with the oncologist I chose and that I want to be in charge of my care. It was somewhat difficult to take back control as this other oncologist seemed to feel if I had the HAI pump he should be in charge of my care, my decisions, and of me, because he is an extremely controlling type. That might work for people who feel they need someone to take over. It did not work for me.

The first treatment went very well. The second one however was much higher dose - as this doctor had decided - and I had a very severe reaction. It caused bile duct inflammation. This is quite common I found out, and there is a risk of bile duct damage. The gallbladder is removed because otherwise the gallbladder will absorb too much chemo and it will be toxic. In absence of the gallbladder the bile ducts are the next thing in the line of fire. In my case it ended up affecting the flow of bile so that I was passing colorless lumps every half hour or so. There was nothing I could eat that I could successfully digest. Eventually I learned Imodium could help but only to a limited extent. My liver function tests were high and showed damage but I was advised as long as my bilirubin was normal and I was not jaundiced, it was ok.

However Intera has standard treatment protocols and it turned out my liver damage was too severe and I would have to pause the FUDR chemo. I paused for about a month and my cancer started progressing. I then had a 3rd treatment at a low dose, and during the 2 week treatment and 2 weeks of heparin solution I had Folfox. All of it was too much for my liver and my function tests were sky high. I'm now having to pause again. I have had the worst side effects In have ever experienced. The FUDR causes diarrhea and bile duct issues, liver damage and therefore nausea and extreme fatigue and weakness. I am to the point where if I need something from upstairs, I may just not get it and fall asleep on the couch and try again tomorrow. If I want to shower, shop and cook a meal I will need 2 days. I have headaches from the nausea medication. I have neuropathy from the other chemo. I have
very dark circles under my eyes from the liver issues and bruises from sticks, which happen in the pump area and around my chest port don't heal. The Folfox contains 5 FU which is similar to the FUDR all overwhelming my liver. Do not believe that this is a "low side effect" chemo. I learned another local patient is having exactly the same liver damage issues with his HAI chemo and is also on pause.

I had really wanted this and I still hope that if my liver heals I could have another treatment that can help me get to a resection but I think it is likely I have too much toxicity from it. I regret losing my gallbladder for it and the liver damage I have now. It was taken off the market before because of these problems and is not approved for use with FUDR in Europe. They use a different chemo there. There are issues with where to get treated and you are stuck to the facility that can treat you.

And it's not small. No, you can't exercise and do things normally with it. I had to buy new clothes and can't just go in jeans anymore as they are awkward with it if you are small as I am.

I am glad there is a place people are sharing real experiences including those who got to resections with it. There certainly is not enough information about the problems and side effects that come with it.

Wow, okay, just watched the video - thanks for the Sunday morning happy cry < 3.

Congratulations to you and your hubby @ssh32082 . I agree with Colleen's questions. Any details on what to expect and how to support my hubby are appreciated.

May you have a lifetime of celebration days together

Thank you for sharing your inspirational sorry. Will look up. We are going for consult tomorrow, very timely. Wish you and your hubby well.

Welcome, @ssh32082. I noticed that you wished to post a URL to a video with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Please allow me to post your husband's and YOUR journy for you:

Your husband looks like the picture of health in the video as he recounts his journey. He's glowing. Can you share a bit more what it was like when he was going through both the systemic chemo and then the HAI pump which injects high-dose chemo into the liver? What were the side effects? What were his caregiver needs during that time?

My husband got the pump in June 2023 after his colon cancer had metastasized to his liver. He had had systemic chemo prior to that. The pump worked so well that he has now had a second liver resection, and his liver is basically clear of all disease. The pump is definitely an investment in time, but for us it was completely worth it. There is a youtube video by Northwell Health detailing my husband’s journey, but I am
unable to post the link for some reason. Try searching for a YouTube video with this title: “HAI pump: Unique liver cancer treatment gives hope for those with inoperable tumors”

What does MSK stand for in NYC? Is that further than Sloan to upstate NY? I’m trying to figure out as I have family upstate as well if needed. I’m from burb outside of Chicago

I will await your news about his eligibility for the clinical trial. If Mayo Clinic is an option, here is how to submit a request for a second opinion http://mayocl.in/1mtmR63. The request for an appointment/second opinion does not require a physician referral. Your husband can self-refer or you can submit on his behalf.

Thanks Colleen for you help. We won't know about the trial until mid-April, we have to show no disease progression on the new chemo we started (oxiplatin+5FU).
He has colon (MSS/wild type) metastatic to the liver, several tumors. Last time I asked our normal oncologist about operability she said they are doctors, not miracle workers. I have a little more faith than her, I know there are miracle workers out there. If we can't be taken in Canada, US is our next stop, but seems that the insurance/cost will be challenging, even though he's a US citizen and only moved to Canada in 2021 to be with me. Thanks for you help, remaining hopeful and hopefully Susan159 is doing well.

I'm tagging @susan159 to make sure she sees your question about follow up to her experience.

@sugar42042, was your husband accepted into the trial? Does he have primary liver cancer or metastasis to the liver?

I just wanted to check to see how this turned out. I'm trying to get my hubby into a heptic infusion program (it's a trial in Canada). Seems like you may have some customer expertise to share