Since you asked, here’s my HAI pump story to date: I apologize for the length. I was diagnosed a little over a year ago with Stage IV Colon Cancer which had metastasized to my liver. I had one tumor in my ascending colon and many large tumors in my liver. My Oncologist started me with Folfox and added Avastin(immunotherapy) after a few months. Initially my tumors were shrinking. But after less than 6 month I had to discontinue Oxaliplatin due to neuropathy problems and I had to discontinue Avastin because I was having such a severe reaction to it during my infusions (Rigor mostly). The Dr. then switched me to Irinotecan and the FU pump. Under this regime my tumors stopped shrinking. My CEA levels started to rise and the tumors started growing.

Around this time (November/ Dec.) my group of Drs in San Antonio, who are affiliated with MD Anderson, hired a new Surgical Oncologist who is being tasked with bringing the HAI pump option to their practice in San Antonio. This Dr. suggested that I not wait until his HAI pump program was up and running, but get the pump implanted ASAP. MD Anderson in Houston does not offer the HAI pump. The closest place I could get treated was in Dallas (5 hours from me). Another other option was to go to Sloan Kettering in NYC. I opted for MSK for a number of reasons:
1) My Dr. in San Antonio had done a fellowship at MSK and is familiar and in contact with many of the Drs I would be seeing in NY. Going forward it seemed like this would make coordinating my care easier when I eventually can come back home to San Antonio for my HAI pump infusions.
2) MSK in NYC is where the HAI pump was developed and they have been implanting it successfully for 20 years.
3) Through family I connected 1st hand with Brian who had a very similar medical scenario to mine. (Too many liver mets to be resected etc…) He had the HAI pump implanted at MSK 10 or 15 years ago. He credits it with saving his life and he was very helpful and forthcoming about his Drs. And his experience. Some of the Drs he told me about have become my Drs. Brian has been cancer free for 10 or 15 years now.
4) My husband and I have many ties to family and friends in NY. We generally spend our summers upstate, so NY seemed like a logical plan.

Everything took longer than anticipated, but I had my surgery at MSK in mid-March. I had my ascending colon resected, my gall bladder removed, and the HAI pump implanted in one big surgery. (You must have your gall bladder removed before getting HAI chemo because the stronger chemo going through your liver would cause it to be removed later anyway). I opted not to have the surgery done robotically for various reasons. The recovery was very difficult for me. The gall bladder surgery gave me chronic diarrhea which kept me from getting my strength back. I am controlling it with Cholestyramine and starting to finally get some of my stamina back. But it’s been a long haul.

My other complication has been that when they went in to do my surgery they discovered that my liver blood vessels were “fragile”. I had a dissection in my Hepatic artery and so the HAI pump was not working properly. (Nothing wrong with the pump, my blood vessels/pathways are the problem). When they did a “pump scan” it turned out the stuff was going into other organs besides my liver (Spleen, duodenum, maybe stomach?). So, I was not able to get any pump chemo. This is apparently a very unusual occurrence.

I have been taking a baby aspirin/day and trying to get stronger. I have had 4 pump tests and things are improving with each one. The interventional radiologists have gone in twice through both my groin and my wrist trying to help my blood vessels send HAI chemo on the correct path, but so far there isn’t much they can do. My liver blood vessels have atrophied and were too small for them to do any intervention a month ago. That being said, my last pump test in May showed that the HAI pump was no longer sending stuff to any organs outside of the liver. Unfortunately, the pump is only able to get drugs to parts of my liver right now. But my Drs determined that since nothing was going outside the liver, I could start getting HAI chemo along with my systemic chemo 2 weeks ago.

I get systemic chemo every two weeks and the HAI chemo is really every 4 weeks. They alternate every two weeks with saline solution in the pump. It’s too soon for me to tell you weather it’s working yet. I have only had one HAI infusion so far.

Here are some details:
1)They told me the pump was the size of a hockey puck. For me, it’s more like somebody cut a softball in half and glued it to my stomach. (I’m told mine sticks out more than other’s because I’m thin).
2)You have to keep the pump filled, so even when I wasn’t getting chemo in it, I needed to get saline put into it every 2 weeks. (Eventually, when you don’t need chemo any more, they can put glycerin in it which only needs a refill every couple of months or something.
3)Getting the pump filled is pretty much the same as accessing your port. No big deal. They 1st go in and empty and measure anything left in the pump and then refill it.
4)After only one HAI treatment I didn’t notice any side effects from it. They need to monitor your liver blood work very carefully to make sure the HAI chemo is not doing any harm to your liver.
5) Apparently Irinotecan usually works very well with the HAI pump. I am sorry but I’m not exactly positive about what chemo is going through the HAI pump. I think it’s FU, but don’t quote me on that. As I understand it, whatever they use, it’s the only way it’s done. There is only one drug option for the HAI pump, but again I could be wrong.

If somebody out there wants more details or to talk to me about the HAI pump experience, I’d be happy to have a phone call. I just don’t know how to arrange that without publishing my phone number to the world.